PAXTON'S BIG ADVENTURE To the NICU... and beyond!

Not Alone

2011-10-01T17:33:00.002-04:00

Slowly fading away
You're lost and so afraid
Where is the hope in a world so cold
Looking for a distant light
Someone who could save a life
You're living in fear that no one will hear your cries
Can you save me now

I am with you
I will carry you through it all
I won't leave you I will catch you
When you feel like letting go
Cause you're not, you're not alone

Your heart is full of broken dreams
Just a fading memory
And everything's gone but the pain carries on
Lost in the rain again
When will it ever end
The arms of relief seem so out of reach
But I, I am here

I am with you
I will carry you through it all
I won't leave you I will catch you
When you feel like letting go
Cause you're not, you're not alone

And I'll be your hope when you feel like its over
And I will pick you up when your whole world shatters
And when you're finally in my arms
Look up and see love has a face

I am with you
I will carry you through it all
I won't leave you I will catch you
When you feel like letting go
Cause you're not, you're not alone

And I will be your hope
And I will pick you up
And I will be your hope
And I will be your hope

Slow fading away
You're lost and so afraid
Where is the hope in a world so cold

Music Makes the World Go Round

2011-08-09T19:01:00.002-04:00

Paxton had another Kindermusik class this morning. This was his second time going to this interactive music class. The nice thing was that Scott was able to join them today. Susanne was interested to see if he thought this would be a good addition to Paxton's repertoire of appointments or not.

Once they got inside, it was nice to see some familiar faces. The same six children were present for this class that were present for the last class. The theme for the summer classes was "Creatures of the Ocean". With today's class, there were various songs that they sang, different instruments that they played, a huge parachute to bounce a beach ball around on, and sign language that they learned. They also had storytime and special time for cuddling to help wind everyone down at the end. This just happened to be Susanne's favorite part. She sure loved her snuggle time with the bug.

Scott seemed to enjoy himself. He could see the excitement in Paxton's eyes watching all of the children move about and make noise. He also could see that Paxton responded so well to the singing and music. With Paxton's facial expressions alone, they both knew that he was benefitting from this type of interaction and socialization. They were going to seriously consider signing him up for the fall classes.

Action....Reaction!

2011-08-08T21:50:00.005-04:00

Paxton had a speech therapy appointment at Inova Farifax Hospital Rehabilitation Center this morning. This was his fourth visit and things had been going really well. Susanne was beyond thrilled with the progress he was making thus far.

Susanne could tell that Paxton was tired when they arrived. She was hoping that it wasn't like last week, which definitely hindered his performance. It was such a difficult thing to try to figure out an ideal schedule for all of the appointments Paxton required and not interfere with his nap schedule. It just wasn't going to happen. He was a fighter though and tended to push through his sessions regardless of his state.

While they were waiting to get called, Susanne noticed a sign that said there were free books available for the patients of the Rehabilitation Center. Susanne decided to skim through the pile to see if there was one that would be perfect for Paxton. She was ecstatic to find that the most memorable book from her childhood was sitting right in front of her. She could recognize the black and white checkerboard cover anywhere. It was "The Real Mother Goose" book. She remembered her father reading it to her a lot as a child. It had been a special gift from her Grandmother that they both cherished. She smiled at the memory of her Grandma and the joy she brought to Susanne's life. It brought tears to her eyes when she realized she had found the book that she thought she would never see again. It was funny how things worked out sometimes.

The session started with all of the usual oral motor exercises to wake up Paxton's mouth. He seemed somewhat irritable, but tolerant of what was going on. When it finally came time to feed him solid food, he wasn't feeling it at all. He managed to get down a few spoonfuls of pureed squash before having a total meltdown. He did recover nicely once he was in his mama's arms. The rest of the session the therapist spent playing peek-a-boo trying to get him to anticipate what she was going to do. He acutally caught on quickly and started laughing before she said the magic words. They also worked on object permanance. The therapist encouraged Susanne to show Paxton an object and then hide it partially so that he could see that it was halfway gone. This way they could start to teach him that just because an object is hidden, it doesn't mean it had vanished into thin air. The goal was to get him to eventually look for an object once it was removed from his line of sight. Susanne looked forward to practicing this over the course of the week.

The next appointment was with the new occupational therapist that Paxton had met with for the first time last week. This was set up through Children's National Medical Center at one of their satellite clinics. Today, the therapist started Paxton out on a bolster, which was a long, narrow foam cushion. He was able to work on tummy time in a different fashion than he was used to, which was exciting. The therapist also rolled him from side to side on the bolster, which allowed for him to engage numerous muscles when trying to right himself. He was surely going to get stronger from these exercises.

The therapist determined that Paxton's center of gravity was pretty high up his back. Her goal was to transition this location down lower over time. A lot of the session was spent with Paxton in her lap. She worked with him in the different positions he would go through to go from laying down on his tummy to sitting. She indicated that it was important that he work a lot on a dynamic surface instead of a static surface so that more of his muscles would be activated. It would strengthen his core and stretch out the muscles that he wasn't necessarily used to using. If he always worked on something like his wedge, the floor, or boppy, then he wouldn't get the same opportunity to feel that give and take with the movement. The therapist had Susanne sit on the exercise ball and lift her legs and try to maintain her balance. This was so that Susanne could get a sense of how hard Paxton's muscles were working even when it appeared like an easy task. Paxton rarely put weight through his feet when sitting on Susanne's leg so it was the equivalent exercise as what Susanne did on the ball. It was shocking how difficult it was for Susanne to do that for minutes. It gave her a whole new perspective on how hard this little guy was working just to do simple things like sitting.

The last exercise they worked on was similar to what they had done in the speech therapy appointment earlier. She wanted Paxton to anticipate what she was going to do before she did it. She did this through working on protective extension of his arms. She would prep him for falling to one side or another by saying, "AH, AH, AH....BOOM!!" His arms would be placed down on the ground to catch him from falling. He eventually caught on the verbal cues and anticiapted his hands being placed on the ground. It was so cute to see his face light up with excitement for what was about to happen. He was definitely getting stronger every week. Once again, the increase in his therapy services as well as Susanne being available to work with him 24/7 really made a huge difference.

The Wise and The Foolish

2011-08-05T03:09:00.003-04:00

Matthew 7:24-27

"Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock. But everyone who hears these words of mine and does not put them into practice is like a foolish man who built his house on sand. The rain came down, the streams rose, and the winds blew and beat against that house, and it fell with a great crash."

It's Paying Off

2011-08-04T23:32:00.001-04:00

Paxton had a physical therapy appointment bright and early this morning. For once, he was wide awake for about thirty minutes before the therapist arrived. This worked out really well because he was able to wake up slowly, get his gagging episode out of the way, and clean his system out completely...and I mean COMPLETELY! This was so much so that he required a total outfit change in addition to a clean diaper.

Today, Paxton proved that he continued to get stronger and stronger. It was so rewarding to see that the increase in therapy services had really proven to pay off. Everything from his head control, core strength, ability to prop sit, rolling over, and resistance had improved. The new skill for today was having him stand up by providing support by having his back lie against the exercise ball while Susanne supported his upper body and the therapist supported his legs. It was so odd to see him in this position. It made him look like such a young man.

Paxton got a short cat nap in before his next therapy appointment. Susanne had to wake him up this time right before the session which he was not thrilled about. The occupational therapist decided she wanted to work on oral motor skills. Susanne started with facial and oral massage. Once his cheeks and mouth had woken up, she started with rubbing his gums with his nuk brush. Since he was teething, he invited this with no hesistation. Susanne then introduced an oral swab with water. He was out of control. He allowed Susanne to place the oral swab straight in his mouth and he was suckling with such strength. His ability to form suction around the swab was an impressive new skill. Susanne couldn't wait to show his therapist the improvements he had made with eating pureed food over this last week. It was merely finding a specific flavor that he was interested in. Paxton didn't eat the pears with cinnamon and oats as vigorously as he had on Monday, but he still did a fantastic job. He took about ten spoonfuls of the pureed food before becoming fatigued. He had really picked up on opening his mouth when cued. This helped Susanne to believe that he was understanding some of what she had been saying over and over for the last year. For the first time, he allowed the spoon to go past his teeth and closed his lips around it. He was still a little apprehensive about the food at first, but he still used his tongue to explore the food and eventually swallow it. He was becoming much faster at this skill and less guarded. They finished the session with brushing his teeth. He absolutely loved the finger brush pushing against his gums. It provided such relief for the teeth that were erupting through the gums. Susanne really thought he could have her sit there and do that all day.

Paxton was very talkative throughout the entire therapy session. Susanne noticed that he had added a new sound today. He was saying the "N" sound. She just hoped this didn't mean he was on his way to learning the word "no". She quickly reminded him to continue practicing his "M" sound so that "mama" could be his first word. She thought he at least owed her that. :)

Later that day, Susanne read Paxton a series of books. She had started to focus on the touch and feel books so that he could explore the pages with his hands. He seemed to take a liking to them really quickly. This was another area where Susanne had a word to prompt a certain response from him and he would do it. She would simply say, "Can you touch it? Touch, touch, touch" and he would reach out with his little hand and rake his fingers across the pages.

Just One of Them Days

2011-08-03T23:55:00.002-04:00

Susanne had to get Paxton up and out of the house before 7:30am. This was rough for both of them. Paxton had a speech therapy appointment this morning with a new person at a different hospital. Susanne was having to try to piecemeal his therapy scheudule together since she couldn't find one facility that was willing to see him more than once a week.

Susanne arrived with ten minutes to spare. After unloading Paxton, securing him in his stroller, and gathering all of their multiple bags, she realized she had parked in a reserved parking space that required a parking pass. She had to reload everything and try again. She found another parking space within minutes. She repeated the above process. After getting inside the building, she was confused. She needed to get to the fifth floor, but this building only had two levels. She called the number to the clinic to figure out what was the problem. She was informed that she was in the wrong place. She had gone to the Physician's Offices I, but she needed to be in Physician's Offices II. Of course, this building was on the opposite side of the hospital. Back to the car she went to start over. It didn't help matters that it was raining. By the time she got to the correct location, she was now ten minutes late.

The speech therapist came right out to get them. She read over his order for services that was from Paxton's pediatrician. She quickly informed Susanne that the order was missing something. Instead of saying Paxton needed an evaluation and treatment for speech and feeding therapy, it just said speech therapy. She told Susanne that she would not be able to work on feeding with Paxton today because of the incorrect information. This put Susanne over the edge. She couldn't fight back a tear that was insistent on coming out. The therapist finally agreed to continue the assessment.

She spent the first thirty minutes getting a history from Susanne. This sometimes frustrated her especially when she would spend the entire night before the appointment filling out the fifteen page history form with all of the SAME information on it. Needless to say, there was a lot of talking, but not a lot of therapy. Better luck next time.

Susanne got home just in time to put Paxton down for a quick nap before his pediatrician's appointment at noon. He was going in for his 18 month check-up appointment. Where did the time go?

Paxton was looking good. He was still right at 25 lbs. This placed him in the 35th percentile for his weight. He measured at 32" long which put him in the 45th percentile for his height. This was a MAJOR improvement from not too long ago when he was in the <5th percentile for both. Dr. Lynn checked his iron level which came back normal. She agreed with the gastroenterologist that it was a good time to discontinue the vitamin supplement with iron. This was music to Susanne's ears. It felt nice for once to be able to subtract something from Paxton's regimen instead of adding something. The pediatrician also approved the proposed changes for Paxton's feeding schedule. This was going to be a slow process to increase the amount fed while decreasing the rate it was given. His fontanelle had almost completely closed so Susanne would have to figure out another way to observe him for fluid overload. He didn't end up receiving any vaccinations, but he would have to come back within the next three months to update his immunizations.

By the time they got home, Paxton was exhausted. He went right down for a nap and tried to recover from the chaotic day.

Ain't No Thang!

2011-08-01T23:11:00.001-04:00

Paxton had two appointments today. His first one was with one of his speech therapists. While sitting in the waiting room, Susanne read Paxton a book. During the middle of it she realized that he was breathing a little heavier than usual. He also seemed irritable. She could tell that he didn't feel well for some reason. She knew he was tired, but he also seemed quieter than normal. She was worried, but could only monitor him for now.

Once the appointment started, the therapist decided to try some new things. She started with a vibe critter, which was a vibrating teether that helped to stimulate his mouth. Paxton willingly opened his mouth and really seemed to enjoy it. This was definitely going on Susanne's wish list for Paxton along with the Johnson Therapeutic textured spoon. The therapist then tried to offer a pacifier that had a textured nipple. He actually let the entire pacifier go into his mouth and he closed his lips around it. There was some minor suckling, but nothing consistent. This was very impressive. She then moved onto the nuk brush which he also was receptive to. He mastered that exercise rather quickly so they moved onto feeding him pureed food. Today, Paxton got to try a new flavor, which was a mixture of pears with cinnamon and oats. He LOVED it! He acted like it ain't no thing. Susanne had never seem him open his mouth and swallow anything so quickly. He was moving his tongue more than ever trying to taste every morsel that was introduced. At one point, it almost looked like he was reaching for the spoon that was presented to him. He probably took close to 12 tiny spoonfuls. Yay for little victories!

Paxton had been crying on and off throughout the entire appointment, but still held up pretty well until the end. They had to cut the appointment short because he was exhausted. The only thing that helped him to hang on as long as he had was his baby buzzer and an oral swab. Every time he was out of sorts, Susanne was able to hold him and comfort him. She hated seeing him so unhappy. She wished that she could take him home right after their session, but that was not the case. He had one more appointment to go.

Paxton met with a new occupational therapist today through Children's National Medical Center. This was the first time that Susanne had been to a therapy appointment where there were multiple children and therapists. Susanne quickly became overwhelmed with the sight she saw. There were multiple children that were suffering from chronic issues. Some couldn't walk well and others couldn't use their arms well. The only thing that brought a smile to her face was that the children were all so positive.

The occupational therapist did an evaluation on Paxton and then told Susanne some new exercises to try with him. She wanted him to have a baton that was clear and filled with glitter to have him hold onto while he extended his shoulders by bringing both arms beside his head. He was SO BIG! He loved the work they did on the exercise ball. He really seemed to settle once he was on that. Susanne could tell he was overtired. He almost fell asleep a few times during therapy. He didn't appreciate the interruptions when he would try to doze off. The therapist revealed that she was trained in massage and would like to teach Susanne some techniques that might benefit him greatly. She couldn't wait.

Susanne was slowly, but surely having success with increasing Paxton's therapy requirements. She wasn't sure she would make it to 10 hours of therapy per month, but she was going to die trying. He was that important.

I Crack Myself Up!

2011-07-29T01:35:00.004-04:00

As Susanne was getting in bed a little after 1:00am, she was startled by the sound of Paxton laughing at himself. He was having a grand old time kicking around and squealing in the darkness. It was the cutest thing she had ever seen. She wasn't sure what was so funny, but it sure made her smile. Silly boy!

Happy Little Eater

2011-07-27T23:56:00.001-04:00

Paxton laughed the entire time that Susanne worked on oral feeding today. It was such a weird response for something that he had hated and resisted so much. He tolerated the facial and oral massage well. He willingly accepted his oral swab. He was becoming less and less interested in the Haberman bottle again. He only took 5ml of water today compared to the 20ml he had taken a few weeks ago. He accepted the Nuk brush even with a little pureed banana on it. Paxton anticipated the spoonfuls of banana. His face immediately turned sour with the taste of it. He did well though and took five small spoonfuls. The most exciting part was that he didn't gag or spit up. Susanne finished up with brushing his teeth. All in all, he was a happy boy at the end of their session.

Paxton's milestones today included being able to shift his weight onto one arm in a propped seated position while playig with a toy in the other hand. Yay! Go Paxton!

He also showed significant improvement with being able to hold a ball in his hand. This had previously been such a challenge for him because he held his thumbs in a closed position. Now he was able to hold his hands in a more open position which in turn made it easier to grab larger objects that weren't ring-shaped.

I'm Such a Ham!

2011-07-25T23:30:00.001-04:00

Paxton had a speech therapy appointment this morning. Getting to the appointment almost took Susanne longer than the actual appointment itself. Even though this was disheartening for Susanne, she definitely thought that the travel time was well worth it in the end. The medical model of the hospital vs. the parent model of Early Intervention was a great adjunct to Paxton's therapy. It was nice for Susanne to catch a break with doing all the work with him. A trained professional could finally have their hands on him during the entire hour of therapy. It was also nice to see that the speech therapist was able to come up with new exercises for Paxton to work on.

She started the appointment by asking Susanne questions about Paxton's level of verbal communication. She wanted to get a feel for where he was at so she could also focus on this in addition to the feeding component of therapy. Paxton was trying to show off during the appointment by babbling the full hour. He wanted to make sure to show the therapist his full range of sounds. He also attempted to mimic the faces that the therapist was making at him. This was the first time that Susanne witnessed this skill other than when he had mimicked her in the past with sticking her tongue out or making the suckling sound. It was always so exciting to see him learn new tricks.

About halfway through the appointment, they moved on to the feeding component. The therapist started out with some facial massage. Paxton thought this was great and giggled the whole time. She moved on to rubbing his gums with her gloved finger. Once he was all warmed up, she took a nuk brush which had a textured surface and rubbed it on his tongue. This was to encourage it to come forward and lay flat. Paxton gagged a couple of times, but would immediately laugh afterwards. He was being such a ham today. The therapist used a new tool today called the Johnson's Therapeutic Textured Spoon. The purpose of it was to provide oral-sensory stimulation along with feeding. At first, she just presented the spoon by itself. Before adding any food, she offered him a water soaked oral swab. He loved it. He was smiling in between suckles which was quite hilarious. The therapist quickly moved on to offering a squash infused oral swab. She achieved this by mixing the tiniest bit of pureed squash in with the water that she was soaking the oral swab in. He didn't even seem to notice. Next, she offered the pureed squash on the textured spoon. He didn't like it and quickly caught on to the change. He started whining and fighting the therapist with every mouthful. He couldn't keep up the sass for long. They were able to get him to laugh everytime he started to get the least bit cranky. Hopefully, he would become desensitized with every session. Susanne was positive that with the increase in all of his therapy services, he was bound to make some noticeable improvements.

Don't You Ever Grow Up

2011-06-09T17:34:00.002-04:00

Your little hands wrapped around my finger
And it's so quiet in the world tonight
Your little eyelids flutter 'cause you're dreaming
So I tuck you in, turn on your favorite night light

To you, everything's funny
You got nothing to regret
I'd give all I have, honey
If you could stay like that

Oh, darling, don't you ever grow up, don't you ever grow up
Just stay this little
Oh, darling, don't you ever grow up, don't you ever grow up
It could stay this simple

I won't let nobody hurt you
Won't let no one break your heart
And no one will desert you
Just try to never grow up, never grow up

You're in the car on the way to the movies
And you're mortified your mom's dropping you off
At 14, there's just so much you can't do
And you can't wait to move out someday and call your own shots

But don't make her drop you off around the block
Remember that she's getting older, too
And don't lose the way that you dance around
In your PJs getting ready for school

Oh, darling, don't you ever grow up, don't you ever grow up
Just stay this little
Oh, darling, don't you ever grow up, don't you ever grow up
It could stay this simple

No one's ever burned you
Nothing's ever left you scarred
And even though you want to
Just try to never grow up

Take pictures in your mind of your childhood room
Memorize what it sounded like when your dad gets home
Remember the footsteps, remember the words said
And all your little brother's favorite songs

I just realized everything I have
Is someday gonna be gone

So here I am in my new apartment
In a big city, they just dropped me off
It's so much colder than I thought it would be
So I tuck myself in and turn my night light on

Wish I'd never grown up
I wish I'd never grown up

Oh, I don't wanna grow up, wish I'd never grown up
Could still be little
Oh, I don't wanna grow up, wish I'd never grown up
It could still be simple

Oh, darling, don't you ever grow up, don't you ever grow up
Just stay this little
Oh, darling, don't you ever grow up, don't you ever grow up
It could stay this simple

Won't let nobody hurt you
Won't let no one break your heart
And even through to you want to
Please try to never grow up

Don't you ever grow up
(Never grow up)
Just never grow up

I Won't Let Go

2011-05-15T13:27:00.001-04:00

It’s like a storm
That cuts a path
It breaks your will
It feels like that
You think you're lost
But you're not lost
On your own
You're not alone

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh, it finds us all
And we’re too small
To stop the rain
Oh, but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let you fall

Don’t be afraid to fall
I’m right here to catch you
I won't let you down
It won't get you down
You're gonna make it
Yeah, I know you can make it

Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I won't let go

Oh I’m gonna hold you
And I won't let go
Won't let you go
No, I won't

Happy Cinco De Mayo!

2011-05-05T19:02:00.003-04:00

ROCKIN' IT OUT CINCO DE MAYO STYLE!!

OLE'

Barium Swallow

2011-05-05T18:58:00.005-04:00

Paxton had a modified barium swallow today, which was to be able to better understand Paxton's swallowing dysfunction. This test was last performed at Cincinnati Children's Hospital about a year ago when he still had his cleft palate. Now that it had been repaired and he had been working on feeding therapy, everyone was hoping that they would see a positive improvement with his ability to swallow.

There was a wide variety of items that Susanne had to feed Paxton so that the speech therapist and radiologist could assess his swallowing ability. They looked at everything from the movements of his lips, tongue, palate, and larynx as he was offered different barium infused foods and liquids to eat and drink. The barium, which is a radio-opaque compound, was used to outline the structures of Paxton's mouth and esophagus. It helped them to see how well Paxton was swallowing and if he runned the risk of aspiration. Susanne started with the thickest semi-solid food and ended with a thin liquid that was the same consistency as water. He opened his mouth on cue every time for her. This was an improvement in and of itself. This was proof that he had some understanding as to what she was asking him to do.

By the end of the study, Paxton looked like he had stuck his face in a jar of Marshmallow Fluff. Susanne couldn't help, but giggle. Paxton had done really well. The speech therapist and radiologist determined that the results were comparable to the last study, but he was faster at clearly his mouth. He still had an abnormal oral phase to swallowing. He struggled with knowing how to organize the food in his oral cavity. He handled the pureed foods the best, which wasn't surprising. He was able to have a little more control of food that was this consistency. He proved that he was able to guard his airway rather well while still trying to figure out how to move the food down his esophagus. On the other hand, Susanne was informed to minimize liquids at home because there was still evidence that it would go up his nose occasionally even with the cleft palate being repaired. This really eliminated their need to try to work on getting him to drink from a bottle anymore. Also, since Paxton was unable to chew and swallow properly, solid foods were out of the question. Even the crackers, biscuits, and cookies that were supposed to dissolve in their mouths were viewed as a choking hazard for him. For now, they would be limited to Stage 1 and Stage 2 baby food. Susanne knew that he wouldn't be restricted too much with variety because of all of the flavors that were available now, but she was hoping to find that one magic flavor that would make it all click for him. She had faith, but only time would tell.

Sleepy Head

2011-04-30T23:50:00.006-04:00

Paxton didn't wake up until noon today. He must have been super tired from their busy week in Boston because he slept close to eighteen hours! He didn't even wake up during any of his diaper changes that occurred or when Scott picked him up to hold him mid-morning just because.

Susanne and Scott took this opportunity to get stuff done while he was snoozing. Susanne decided to organize a few things while Scott got motivated to detail the Honda inside and out. It was a rare occasion for them to have a stretch of a few hours to work on anything.

The second that Paxton stirred, Susanne snuck in his room. She greeted him with a friendly smile and a warm good morning. He immediately responded with the sweetest grin that went from ear to ear. She decided to massage every inch of his teeny tiny little body to help him wake up. She started with his head and finished with his perfect toes. After he stretched a few good times, he was ready to play. Susanne started him out on his playgym because he was due for a feeding. He took a moment to get warmed up, but once he got started with kicking around, there was no turning back. He was full speed ahead the rest of the day.

They were all hoping to rest up before their six hour drive back to North Carolina tomorrow. Scott was finally getting a little taste of what Susanne was having to go through every other week with going back and forth from state to state. It was exhausting living out of a suitcase. She was looking forward to the day that she would be settled down in one place with both her boys. Finally getting to live as a family every single day, put a smile on her face.

Capturing The Moment

2011-04-29T23:58:00.009-04:00

Paxton crashed the second they got home last night. He was so tired from the busy day they had and obviously couldn't wait to lay down. He was so tired in fact that he snoozed right through the morning until around 9:00am. He hadn't slept that late in a while. He must have needed the extra shut eye.

Scott and Susanne spent all morning packing for their trip back to Virginia. Paxton enjoyed watching them move about. When he got bored with them, he watched some of the footage from the Royal Wedding. Susanne was training him young to be up with all of the celebrity gossip. It was important to be well-rounded. =)

To pass the time before they had to leave, they continued to work on Paxton's scrapbook page that they had started a few days ago. This page was going to be a part of the Yawkey House scrapbook that was located in their sitting room as a way for the other house guests to get to know all of the amazing children that had stayed there while being seen at Children's Hospital Boston. It was a true inspiration to read all of the incredible stories and see the creative ways that the families tried to embrace the spirit of their child. It helped to preserve hope in situations where there didn't seem to be any. Susanne and Scott were just so honored to be able to share a little bit about Paxton's journey and capture those memories forever for all to see. His page was a real testament as to how far he had come along. It made Scott and Susanne so proud of their little guy.

Before heading home, they decided to grab a bite to eat. Whether they were coming or going, they always seemed to be drawn to the same restaurant at Logan International Airport. The restaurant was called, Jerry Remy's, which was a sports bar and grill. They had good food and good beer. They usually didn't have to even look at the menu because they always got the same thing, but this time something caught Susanne's eye. There was something different about the menu choices. They had a speciality menu made up of just different types of hotdogs. It was Susanne's lucky day. The choices consisted of all of the major league baseball teams with hotdog toppings that reflected the area they were from. It took at least ten minutes for Susanne to choose. She was hoping the next time they were in the area that this menu was still around. She had a lot more hotdogs to try. YUM YUM!

With full bellies, they loaded the plane and took their seats. Paxton did so well throughout the entire flight. He didn't make a peep. There was no crying. There was no fussing. He was nothing, but smiles and giggles. This wasn't surprising since Paxton had always done so well on the previous flights to and from Boston. Paxton received so many compliments as we were exiting the plane. Everyone was so impressed with his great temperament.

On the way home, Scott and Susanne updated Moppy on Paxton's trip. Susanne was going to make it her mission to increase his therapy services from six appointments a month to ten appointments a week. She knew she had a challenge in front of her, but she was up for it. She had overcome a lot more difficult obstacles in the past, especially when dealing with Paxton. Scott and Susanne were just so relieved to have someone that was ready to go to battle for them if need be. This was going to be such a positive change for Paxton and they couldn't wait to see the benefits from it.

Once they got home and settled, Paxton had difficulty going to sleep. He finally tuckered himself out and didn't wake up the rest of the evening. Scott and Susanne decided to take a load off as well. They snuggled up on the couch and wasted a few brain cells watching some TV. It felt good to be home and in the arms of someone you love.

ATTENTION! Delays Up Ahead.

2011-04-27T22:19:00.002-04:00

Paxton had difficulty settling down last night. He had a sore throat from the endotracheal tube he had in place while he was under anesthesia. He also had a mild fever when they finally got home from the hospital, which luckily resolved after a dose of Tylenol. Poor guy didn't end up shutting his eyes until close to midnight. Susanne and Scott knew that he would be tired for his big day tomorrow and there was nothing they could do about it.

They waited as long as they could before having to wake Paxton up this morning. At the last minute, they got him dressed and ready to go. Today, he would be evaluated by the cardiac neurodevelopmental team. A psychologist would assess how developmentally delayed Paxton truly was. Susanne and Scott were hoping that he would be able to function long enough for them to get an appropriate idea of what he was capable of doing.

They arrived at the appointment and then they were immediately escorted to a room. The psychologist had spent the last few days familiarizing herself with Paxton's case and interpreting the test scores from the forms that Susanne and Scott were asked to fill out prior to this day. It seemed to help them feel like she already knew him a little bit.

After getting acquainted with Paxton, she started to test his gross motor, fine motor, and social skills. He started in Susanne's lap using a table as a surface to grab at items. As he got bored with that, she moved on to showing him pictures of two objects to see which drew his attention first. Unfortunately, he was going down hill quickly. They had to take mini breaks all throughout the session. They finally moved to the floor where Paxton was asked to do some work on a padded mat. The doctor observed him in propped sitting, supported sitting, rolling, and reaching for objects while on his back. He did well for most activities, but it was easy to tell he was out of steam. He would push through whatever he was asked to do, but then start yawning and rubbing his eyes shortly thereafter. He eventually started to shut his eyes through portions of his assessment. During those moments of rest, the psychologist would watch some of the videos that Susanne had previously made of her doing therapy with Paxton. Susanne was glad that she had thought ahead about there being a possibility of them not getting to evaluate him at his best. This was the next closest way to show them what was more typical for him on a good day. The psychologist was very thankful for the extra information. Later, Paxton sat in Scott's lap for some of the final tasks. He reached out really well for a green beaded necklace. He also tried to grab at a couple of cheerios that were place out in front of him. After that, he was finished. He had no more to give. He had done really well for being as tired as he was, having gone under anesthesia the day before, and the fact that the appointment lasted close to two and a half hours.

The final interpretation of Paxton's developmental status was disheartening, but not surprising. He scored extremely low on the different assessment tests indicating that his cognitive, language, and motor skills were severely delayed for his age. He was scoring close to a four month old level, which Scott and Susanne had previously been told. The psychologist felt like he had the capacity to learn, but she couldn't predict his future outcome. She reemphasized that Paxton was in the critical stage for learning and being pushed mentally. If they would be able to make any difference, the time was now. She was insistent on Paxton receiving more therapeutic services from not only an occupational therapist, but also physical therapist, speech therapist, and developmental pediatrician. She wanted these therapeutic supports to be intensified from what he was currently receiving. Her request was for Paxton to increase from having six hours of therapy per month to receiving ten hours of therapy per WEEK! Ideally, Paxton would have two therapy sessions per day, Monday through Friday. This would be in addition to any other appointments he would have with his other doctors. She understood the significant demands this would place on the entire family, especially Paxton, but she felt like it was his best chance for success down the road. Susanne and Scott were committed. They had been waiting for someone to advocate for Paxton this way for some time now. Susanne had mentioned her concerns multiple times in the past, but she never felt heard in the same way. The psychologist was serious with her recommendations and very heartfelt when she told them to call her if they encountered any problems with receiving the appropriate services that Paxton needed.

After a long morning and a long week thus far, they were ready for some fun. They decided to walk a few blocks to find a place to eat lunch. The sign that read, "5 Napkin Burger" immediately jumped out. They ate a delicious bacon cheddar burger with onion rings as their first reward for getting through the rigorous appointment schedule that they had had up until that point.

Once they were done, they decided to go on the DUCK tour through Boston. Scott and Susanne had previously done this adventure when they had visited their good friend, Aixa, years ago when she was in graduate school at Boston University. They had enjoyed it so much that they wanted to incorporate Paxton in all of the fun. Paxton had so much fun that he fell asleep through most of it. Even though he missed many of the landmarks of Boston, he did appreciate the cool breeze and being able to snuggle up in his mama's arms.

Afterwards, they walked to the Public Gardens. They were all exhausted, but the weather had turned out to be so beautiful that they couldn't pass it up. They sat in the grass and watched the ducks frolic in the water. They were amazed at how just a little sun brought everyone out to play. They had an excellent time together enjoying each other's company. It was such a nice change to be out of the hospital for once. The fresh air did their body good. It made them feel alive again.

The evening was spent catching up with one of Scott's friends from graduate school. He had just recently found out that she lived in the area so he wanted to visit with her if the opportunity presented itself. Luckily, it worked out perfectly. She picked all three of them up from the Yawkey house and took them across town to her apartment. They had a relaxing evening of pizza, beer, and watched the Bruins hockey game. It was a perfect way to end the day.

Next stop was bed to catch up on some zzz's before tomorrow's full schedule.

Going Under

2011-04-26T22:45:00.003-04:00

Last night, Scott and Susanne decided to skip Paxton's 9:00pm feeding and just lump it in with his continuous feeding. They ended up starting the continuous feeding around 10:00pm, which was much earlier than normal. All of these changes were because Paxton wasn't allowed to have any formula after 5:30am because he was going under anesthesia today. It ended up being perfect timing because Paxton decided to wake up at the same time that Susanne was disconnecting his feeding. He was stirring in his pack-n-play and seemed restless. Susanne was hoping to pick him up before the gagging episode began. He let out a big burp which was a good sign. She lucked out at first, but the second Susanne decided to lay him back down, he started gagging. Paxton obviously didn't want to ruin his long standing record of gagging everyday. After that was all said and done, he finally closed his eyes and slept for another few hours.

Around 8:00am, Susanne started him on a bolus feeding of just Pedialyte. This was the last meal he would receive until after his full day of diagnostic tests. He wasn't even allowed to get any of his medications this morning so that his stomach would be as empty as possible. This would help to decrease his chance of vomiting while being put under anesthesia, which in turn would decrease his chance of aspiration.

Susanne, Scott, and, Paxton didn't need to show up for the first appointment until around 11:30am. This was such a nice change from having to be the first people to arrive. It allowed for all of them to catch up on some sleep and to run a few errands before heading over to the hospital.

They had to plan out their days well because they needed to make sure they had enough time to get to the hospital on foot. The place they were staying at was almost one mile away from Children's Hospital Boston. They were very familiar with this walk and had done it many times before. They actually enjoyed the exercise and getting the fresh air. It especially gave them a sense of freedom on the days they were forced to be cooped up inside the hospital all day.

After their brisk walk to the hospital, they arrived right on time. This didn't seem to matter because Paxton didn't even get called back until after an hour of them being there. As they sat in the waiting room, they overheard discussions between the rest of the families about their current situations. All were just as devastating as the next, but the recurrent theme throughout was that each and every one of the kids dealing with a congenital heart condition were such fighters. Not all of the parents had that kind of strength, but the children were for sure the resilient ones.

Paxton was finally taken back to a prep room where Susanne and Scott changed him into his "Johnny" for the day. Unfortunately, this was an all too familiar setting for them. After the nurse got a brief update on Paxton's status from overnight, he was then moved to the induction room. Susanne was given the pre-medication to give Paxton through his G-tube to make him sleepy. It made them feel a little bit better that he was nothing, but giggles and smiles until the moment they had to leave. While Paxton was being induced under anesthesia, Susanne and Scott were encouraged to go grab a bite to eat. They all knew it was going to be a long day of waiting and there was no use in waiting around on an empty stomach.

After about an hour of Paxton being under, Susanne got a phone call with an update. Paxton was doing well thus far. It would be another hour before they heard from them again. The cardiac MRI was still taking place. Once they completed that test, they would move on to the heart ultrasound.

The second phone call came at exactly an hour later. They had just finished up with the first test and were beginning the echocardiogram. They were told yet again that it would be another hour before hearing anything. The waiting was a killer.

It was around seven hours after they arrived this morning that they called Susanne and Scott to go back to visit with Paxton in the recovery room. He was still very groggy from all of the medications he had received, but he seemed content. Paxton had done well under anesthesia and woke up with no obvious problems. Paxton would have to stay under the doctors care for a few more hours so they could monitor him closely for any difficulties such as an allergic reaction. They would also need to make sure that Paxton could handle starting his feeding schedule again.

They gave Paxton one dose of intravenous Lasix while he was recovering since he had missed two doses already today. Since they had him on a low rate of intravenous fluids during the procedures, they wanted to make sure they hadn't overloaded his heart. Susanne held Paxton and offered him an oral swab while he was trying to recalibrate. He always seemed to do much better in his mommy's arms.

Once he got clearance to leave, they headed back to the Yawkey House. They quickly realized how nice it was for Paxton to be able to come home with them at night. This was much different than the last few trips to Boston, which were for some of his major surgical operations.

Now Boarding...

2011-04-24T23:34:00.001-04:00

Scott, Susanne, and Paxton caught a flight to Boston today. They would be up there for a week for multiple follow up appointments that were scheduled for Paxton. It was weird to them how Boston had started to feel like a second home.

Today was Easter Sunday. They were bummed that they had to fly out on such a special day, but they had no choice. Most years they spent this holiday with Susanne's family. They usually started out their morning by going to a sunrise service to celebrate the resurrection of Jesus Christ. Afterwards, they would go to breakfast. Once they returned home, they usually spent the afternoon snacking on the sweets that the Easter bunny dropped off that morning. Even though they couldn't be with everyone this year, the Easter bunny still found Paxton. He was so kind to give all of his treats to his mommy and daddy. There were no complaints on their end. Paxton did receive a special bunny and book from Moppy that he would get to enjoy over this next week. He was super excited.

The flight was uneventful and they got to the Yawkey house with no problems. They arrived just as the families staying at the house were finishing Trivia night. They had so much fun participating in this the last time they were up there. It helped to take their mind off of worrying about Paxton. Hopefully, this was serving the same purpose for the others.

How Great Thou Art!

2011-04-24T14:27:00.002-04:00

O Lord my God! when I in awesome wonder
Consider all the worlds Thy hands have made,
I see the stars, I hear the rolling thunder,
Thy power throughout the universe displayed:

Then sings my soul, my Savior God, to Thee:
How great Thou art, how great Thou art!
Then sings my soul! my Savior God, to Thee:
How great Thou art, how great Thou art!

When through the woods and forest glades I wander
And hear the birds sing sweetly in the trees;
When I look down from lofty mountain grandeur
And hear the brook and feel the gentle breeze:

Then sings my soul, my Savior God, to Thee:
How great Thou art, how great Thou art!
Then sings my soul! my Savior God, to Thee:
How great Thou art, how great Thou art!

And when I think that God, His Son not sparing,
Sent Him to die, I scarce can take it in;
That on the cross, my burden gladly bearing,
He bled and died to take away my sin:

Then sings my soul, my Savior God, to Thee:
How great Thou art, how great Thou art!
Then sings my soul! my Savior God, to Thee:
How great Thou art, how great Thou art!

When Christ shall come with shout of acclamation
And take me home, what joy shall fill my heart!
Then I shall bow in humble adoration,
And there proclaim, my God, how great Thou art!

Then sings my soul, my Savior God, to Thee:
How great Thou art, how great Thou art!
Then sings my soul! my Savior God, to Thee:
How great Thou art, how great Thou art!

React, Respond, and Rescue

2011-04-23T23:18:00.002-04:00

Scott and Susanne had been feeling a little run down since yesterday. They each ended up taking a dose of Nyquil before bed last night to try to help alleviate the symptoms before they got worse. It always seemed to help in the past. They were just hoping it would work this time. The last thing they wanted was to be sick during their week in Boston.

Susanne woke up to the serenading sound of gagging. Paxton knew exactly what to do to get her out of bed and in his room with the quickness. Not even Nyquil could slow her down. She had become so in tune with his sounds that even when she was sleeping she could hear him. It was almost like the pre-gag sound was her first cue to bounce up and get in there before it progressed to a full on vomit fest. Luckily, she was able to do just that this morning.

Once Paxton had settled down, Susanne went to get his first feeding of the day along with his medications. While she was warming his formula, she started a load of laundry. It was at that time that she heard Paxton gagging again. She rushed up the stairs and into his room to try to sit him up before he spit up everywhere. She was shocked to see that throughout all of the chaos that had gone on this morning, Scott had not budged. He was still sound asleep. Nothing seemed to phase him unless he was hit over the head.

The nurse came over again today. Paxton was sleeping when he arrived. He slept from noon until around 3:00pm. This new nap schedule seemed to be working out well so far. Since there was someone available to watch Paxton, Susanne decided to run some errands. She had a few items to pick up before they flew out tomorrow. Susanne was thrilled that it had warmed up outside compared to yesterday. She hated cold weather.

Paxton was awake the rest of the afternoon. He was bright eyed and bushy tailed when Aunt Leenie and Uncle Loonie stopped by for a visit. Susanne was excited to show them all of the improvements Paxton had made since the last time they saw him. They were impressed with how well he was sitting in the propped position. He would hold steady until he tried to look off to one side or another and then he would crash. Paxton was also doing better with rolling over with assistance. He was starting to understand the concept of what he was supposed to do with his body. The cutest thing was that he was very talkative and smiling quite a bit. It was so sweet to watch him try to communicate.

Paxton decided to keep Aunt Leenie busy with all the dirty diapers he was producing. He was trying to make up for lost times. After showing off his new skills and cleaning out his system, he went right down for the night. He was one tired little puppy.

Weather and Traffic Report...Outlook Not Good

2011-04-22T23:06:00.004-04:00

Even though Susanne and Scott had packed the majority of their bags last night, they had to call it quits at some point. They were able to finish the rest of it this morning. It took another three hours to get the rest of the stuff in suitcases, gather the last minute things that couldn't be done any sooner, and pack up the car. It was never a quick process when going anywhere.

Before heading out, they had to drop of the truck that Scott had borrowed from his brother in law while the Eclipse was getting worked on. After that was done, they were well on their way. Usually the drive took about six hours, but not this time. By the time they got home, it had taken them a little over seven hours. They ran into standstill traffic multiple times along the way, but each time they couldn't figure out the reason for it. They also had to stop twice to change Paxton's diaper. He needed to be changed a third time, but they were so close to the house by that point that they decided to wait.

The weather was acting up recently. It had been 88 degrees in NC a few days ago, but now they were driving into cold, rainy weather in VA. The car estimated that it was in the forties by the time they got to the house. Brrrrrrrrrr! There had also been recent tornadoes that passed through multiple states including NC. It was very devastating to see the damage that it had caused in the different towns along the way. It was easy to see the path that it had taken because everything in it's way was destroyed while everything else surrounding it looked untouched. It took them a while to figure out that anywhere that looked like a construction site was actually someone's home that was no longer standing.

Paxton's nurse came over tonight to watch him for a few hours. This allowed Susanne and Scott to get out of the house and have a date night which they had not done in a while. They had a wonderful dinner together and enjoyed their time alone. It felt like the good old days once again. Afterwards, they went to the movies. They chose to watch a scary one which was their favorite. It just gave Susanne an excuse to sit closer to Scott and hold his hand. :)

Paxton was sleeping when they got home. It was always the most precious site to see, however, his peaceful slumber didn't last long. He began to become restless within hours of them getting in bed. He must of had an upset stomach because he ended up making a mess in his crib. They ended up being behind on his overnight feeding because of the time it took to clean up the disaster area. He sure knew how to aim everywhere, but his diaper. Susanne thought that he sure was pooping a ton for his age. She thought that it would decrease as he transitioned over to completely formula. Also, she was baffled as to why his diaper rash had not cleared. It was now looking really ulcerated and painful. Something has got to give. Poor guy!

Pack Your Bags

2011-04-21T23:14:00.002-04:00

Susanne was up with Paxton a couple of times this morning. He just couldn't seem to get comfortable. Shortly after she got him settled, he woke up gagging as usual which was always difficult for Susanne to witness. She just wished he could catch a break.

After he had recovered, Susanne decided to try to keep him up for a little bit longer than usual so she could try to figure out a new nap schedule. He seemed to consistently fall asleep after only being up about an hour or two, but he had started not wanting to go down again in the afternoon. She was going to try to push back his morning nap so that he wouldn't be awake for so long during the day. It was a fine line between perfect timing and entering into the world of overtired. For any mother out there, they understand the issues that come along with their child being overtired....they don't fall asleep.

It seemed to work well except Susanne forgot she was meeting a friend for lunch. Unfortunately, she had to disrupt Paxton's beauty rest to make it on time. Susanne's long time friend, Brandy, had been in town for a few days. She was heading back home today and wanted to get together to catch up. Brandy's daughter's got to meet Paxton for the first time which was special. There never seemed to be enough time in the day. Before they knew it Brandy needed to get on the road.

Scott brought Susanne home sushi for dinner. She thought that was such a thoughtful gesture and couldn't wait to dig in. She wasn't so sure she would be able to wait until the evening. They decided to watch a movie before starting the whole packing process. They knew it would be a big undertaking since they not only had to pack for their trip to Virginia, but also their trip to Boston. If they were certain of one thing, it was that they were not looking forward to their night ahead of them.

During the process of preparing for their travels, they realized that they needed to do some laundry. On their way downstairs, they realized that they could kill two birds with one stone by placing Paxton in the laundry basket as well. This minimized them having to take more than one trip and Paxton didn't seem to mind the ride.

They quickly burnt out from this whole process. They didn't think that it would take forever to get organized with what they would need. It was difficult enough that Susanne was living in two places, but to then have to plan for a week trip was even more complicating. Even though they shouldn't be surprised, the amount of stuff they were taking with them was mind blowing. By the end of it all, it looked like a family of eight was going away for a month.

Paxton was out like a light in no time. He became exhausted just by watching his parents pack. After he was down for the night, Susanne was finally able to sit down to eat dinner and watch a little TV before bed. Scott decided to be more productive and go to the gym. Susanne felt like she got plenty of a work out that day with just lifting Paxton to and fro. He was getting to be such a big boy.

These Broken Hands of MIne

2011-04-19T23:09:00.004-04:00

"These Broken Hands Of Mine"

By Joe Brooks

Take a breath, I close my eyes
I am lost but try to find
What it is in this life that gives me strength enough
To fight for something more

Well, God knows my feet are aching
And I've got mountains ahead to climb

One way at a time I'll try to lend these broken hands of mine
Give my strength, be my light
One way at a time these walls will fall and fill our empty souls
Give me strength, help me guide these broken hands of mine

The sky is grey, it clouds your world
Clear the air, child, break the mould
I find a place in your heart
To build a shelter from this cold and winding road

Well, God knows you're barely standing
But you've got to carry this heavy load

One way at a time I'll try to lend these broken hands of mine
Give my strength, be my light
One way at a time the peace will grow and fill our empty souls
Give me strength, help me guide these broken hands of mine
Oh, these broken hands of mine

What if there's more
What if there's more
What if there's more than this
What if there's more out there?

One way at a time I'll try to lend these broken hands of mine
Give my strength, be my light
One way at a time the peace will grow and fill our empty souls
Give me strength, help me guide these broken hands of mine
These broken hands of mine

Easter Eggs Everywhere

2011-04-18T22:12:00.002-04:00

Susanne had her hands full today. She was not only taking care of Paxton, but also her oldest nephew, Parker. Parker was dropped off for the day around 7:30am. Susanne invited Parker to help her take care of Paxton, which he was very interested in doing. After Paxton was good to go, they all moved downstairs to have breakfast.

Paxton couldn't keep his eyes open after only being up for about an hour. Susanne put him back down a little early for his morning nap. Susanne and Parker took the monitor outside with them to be able to keep a close eye on Paxton while they played. They initially started out by racing down the driveway on Parker's Big Wheel. Susanne hadn't been on a Big Wheel in well over twenty years. She was pleasantly surprised that she could still fit on one. Eventually, they started adding in other activities. Soon, the Big Wheel races turned into an obstacle course. This was something that was close to Susanne's heart. This was one of the top things that she and her sisters loved to do for entertainment as kids. It brought a smile to her heart when they started pulling things out of Gigi and Poppy's garage that reminded her of her childhood.

Time flew by so quickly. Before they knew it, Paxton was ready for his medications and to be set up for his next feeding. Susanne was impressed with how well Parker helped with everything. He was such a good listener and followed instructions very well.

Once Paxton woke up from his nap, they all watched Paxton's favorite TV shows which included Sesame Street and Sid the Science Kid. Parker was enthralled with the TV. He was so focused on what was on the screen that he tuned everything and everyone else out. This actually came in handy because Susanne was able to successfully complete a therapy session with Paxton without Parker becoming completely bored. Paxton's favorite activity this morning was playing with his sensory balls. He was becoming more and more interested in touching things that had different shapes and textures.

After the shows were over, they went for a walk to the park. They played for hours going on imaginary adventures and eating exotic foods. Paxton even got to participate. He went down the slide with Susanne and even sat on a swing with her. He seemed to have a great time. On the walk back, Susanne and Parker collected a variety of things from the environment. Once they returned home, they laid every item out on the table. They named each different item and talked about them.

Susanne put Paxton to bed for his next nap and feeding. Afterwards, she made lunch for herself and Parker. They ate their hotdogs sitting on the floor looking out the front door watching the landscaper mow the yard. Parker had always been obsessed with lawnmowers since he was born so this was the perfect mid-day entertainment for him.

After lunch, they baked cupcakes for Paxton's Uncle Wally. He recently had a birthday that they wanted to help celebrate. Parker was a great assistant throughout the entire process. Susanne was certain Parker's daddy would be thrilled to know that he helped make them.

While the cupcakes cooled, Susanne set up an Easter Egg hunt outside. She quickly realized that Parker loved finding them just as much as he loved hiding them. They probably went through this cycle about five times before moving on to the next activity.

Next, it was time to dye real Easter Eggs. This would be Paxton's first time ever doing this. Leah was so kind to have purchased an easy to use egg coloring kit so Paxton could participate too. It looked like a salad spinner that you just add the dye and the egg to the inside basket and push the button on the lid to spin it around to decorate it. It was pretty cool. Susanne was excited that Scott was able to join them for another one of Paxton's firsts.

Right after they finished dying all of their eggs, Leah showed up to pick up Parker. Parker and Susanne frosted all of the cupcakes before they headed out. Susanne was excited when she discovered that Leah had brought her homemade rice krispie eggs that had M&M's inside of them. She and Parker had made them the night before. It was the perfect way to end their wonderful day. Susanne was sad to see Parker go. She always had such a great time with him.

Once he left, Susanne realized how exhausted she really was. She somehow found the energy to bathe Paxton, read him a few stories, set up his feeding, and get him off to bed. She ended her night by making some Mexican food and plopping herself in front of the TV for the rest of the evening.

Play! Play! Play All Day!

2011-04-17T23:45:00.002-04:00

Susanne had a wonderful night with good friends, but she was eager to get home to see Paxton. She left early enough to arrive right as his first feeding of the day was getting started. Gigi and Poppy informed her that he did well overnight. There wasn't anything abnormal to report.

Paxton was in his bouncer playing with his toys when Susanne walked through the door. He seemed just as elated to she her as she was to see him. It melted her heart to watch his face light up when he realized it was her.

Susanne played with Paxton for a couple of hours before he started to wind down. He appeared tired and ready for a nap by 11:00am. He slept for three hours before he opened his precious little eyes. Susanne utilized this time to regroup from the night before.

Susanne jammed Paxton's afternoon full of all types of therapy. She had so many activities going that Paxton never got bored. Susanne started out with the exercises that demanded the most energy. She decided to videotape him so that she would have some footage to show the neurodevelopmental psychologist that would be evaluating him in a week at Children's Hospital Boston. She knew all too well that timing was everything. If Paxton just happened to be tired at the time of his appointment when she was assessing him, it could skew the results. This way she had hard evidence of the progress he had made and what he looked like on a good day. She first placed him in a propped sit and watched him hold himself up for at least twenty seconds. She repeated this a few times until he seemed too tired to continue with that exercise. She then moved on to tummy time on the exercise ball. She knew that he always lifted his head the best this way especially if he could watch television at the same time. Paxton sure loved him some TV. Next, she had him on his play gym, mixing it up between assisted and nonassisted play. He was getting so proficient at grasping, reaching, and holding onto toys. He would get so wild and excited during this time. She ended his extended play session with placing him in his bouncer. She set up a musical table within his reach so that he could hit the buttons to activate the lights and the music. She had learned that if she strung a couple of his beaded necklaces on the musical table, he was even more interested and able to entertain himself.

Susanne could see that he was quickly going downhill. He started to yawn, rub his eyes, and squint. She could tell that he was so tired. She immediately put him to bed thinking that he would go right down. For some reason, he was restless. He fought closing his eyes with all of his might. He was probably overtired, which was still such a weird concept for Susanne to reason through. Just like she had done before, she left him in his crib hoping he would eventually shut his eyes. After watching him through the monitor laughing and smiling at himself, she couldn't resist trying to catch it on videotape. Once again, Paxton was too smart for her. He shut it off once he saw the video camera coming his way. He was a ham, but not for the paparazzi. If Susanne wanted hard evidence of his ridiculous cuteness on tape, it would come at a heavy price.

After multiple attempts to get Paxton to go to sleep, she realized that he was overheated. When she would occasionally check on him, he was sweaty. Luckily, he didn't get out of sorts like he usually did when he was hot. She decided to hold him for a while and see if he would settle down better while snuggling with his mama. This seemed to do the trick, which made them both happy. Paxton was also thrilled that Poppy turned the thermostat down especially for him.

Leah came over in the evening for a short visit. It was always nice for Susanne to get to hang out with her big sis! Later that night, Scott returned home from his weekend away. It was a wonderful feeling for Susanne to have him back in her arms. She couldn't wait for the day when all of the traveling back and forth was over. She looked forward to being able to see Scott on a daily basis and finally getting to feel like a real family for the first time since Paxton was born. Susanne was excited about what the future held for them.

Much Needed Mommy Time

2011-04-16T23:52:00.001-04:00

Scott left yesterday to go out of town for the weekend. This complicated things because Susanne was supposed to leave town as well, but for something completely different. She had been invited to a weekend bachelorette party at the beach. She had decided against going away for both nights because she didn't feel comfortable leaving Paxton for that amount of time in someone else's hands. It was weird for her because the older he was getting, the more difficult it was to leave him. He required a lot of care, but she knew Gigi and Poppy could handle that. The bigger concern was that if something were to happen like his G-tube coming out, Susanne would be an hour away. Finally, Susanne decided to go. Gigi and Poppy did a good job of convincing her to get away and have some fun. Susanne eventually realized that it would be a well deserved and much needed evening of adventure, she just needed some assistance being pushed out of the door.

Before this could happen, Susanne had to wait for Gigi to get home from work. She spent this time trying to pack and get ready for the night of festivities. This process carried on for well over two hours because Paxton was unhappy for some reason. He wouldn't go down for his regular nap which was unusual. Paxton was rarely cranky so he must not have been feeling well...or maybe he could sense that his mommy was leaving. This couldn't be too far fetched of an idea because Susanne surely knew that every single one of the animals could tell when she was packing up and heading out.

Unfortunately, Gigi got home later than expected. Susanne had waited to give Paxton his scheduled medications and set up his next feeding to make sure that Gigi was comfortable with everything. Poppy knew Paxton's schedule like the back of his hand, but Gigi was still a novice.

Even though Gigi did great and Susanne had full confidence in her care of Paxton, she just couldn't walk away. She started doing what she was notorious for which was procrastination. It was typical for her to find a million things to do before she left anywhere especially for things like vacation. She would find the most unimportant thing to do and convince herself that it needed to be done right then. Gigi kindly moved her along and out the door.

Once the night got under way, Susanne realized that she was not different than most mothers. The other women that were out that had children spent the entire first hour at dinner showing pictures of their little ones or telling cute stories about something they had recently done. She could tell that it was hard for them all to be away from their kids. After they all got it out of their systems, it was time to slip away from real life for a night and have a blast. And that they did. Susanne still called every couple of hours to check in on the little guy until Gigi and Poppy had gone to bed.

Despite there being a tornado that passed through the area, it didn't affect their night at all. The rain and wind stayed at bay during all of the appropriate times. Susanne realized that she had made the best decision to stay the night after the kind of evening they had and the inclement weather that surrounded them. Fun was had by all and Paxton was no worse for the wear.

Snuggle with the Puggle

2011-04-15T23:18:00.002-04:00

Paxton was still sound asleep when Scott left early this morning. When he finally did open his eyes, Susanne thought Paxton was in the clear for once in his life because he woke up so peacefully with no gagging or vomiting. It wasn't too long after she had this thought that Paxton proved her wrong. He only had a minor gag, but he still seemed to struggle. He still sounded congested. This always made it more difficult for him to recover when he had trouble breathing through his nose. Ever since his cleft palate had been repaired, he had difficulty figuring out how to effectively breathe. He breathed in and out through his mouth the majority of the time. Since there was not a hole in the roof of his mouth anymore, his nose started to collect things. Once that space was occupied, he started to sound more and more like a bulldog or pug. Even though Susanne and Scott kept up with keeping his nose clean, it rarely changed the situation. This would just be another one of Paxton's many nuances.

Paxton kept Susanne busy this morning. She changed four diapers within less than an hour of him being up. He was working hard on cleaning out his system. After Susanne thought he was finished, she put him in his bouncer to play. To Susanne's surprise this was short lived. He was ready to go back to bed. He ended up sleeping right up until his feeding at noon. He was tired for some reason and needed the sleep.

Susanne decided to switch it up once he woke up the second time. She placed him on his play gym while he ate. He finally got active and showed his toys who was boss. He was getting so much better at grasping objects and pulling his knees to his chest.

Later in the day, Susanne worked with him on his exercise ball. This was by far the best place for him to work on tummy time because it encouraged him to lift his head the most. Once he was fatigued from that set of exercises, she set him up to play with his bowl of pasta. He was very interested in touching the different shapes and textures with his hands, but not so much with his feet. James enjoyed hanging out with them while Paxton explored around. Paxton was so whipped from all of the afternoon activity that he ended up falling asleep in the pasta. It was a sad site to see, but hilarious.

Susanne thought that this was a sure sign that he was ready to take a nap, but Paxton had a sneaky way of tricking her. After she put Paxton in his bed, he quickly awoke and got his second wind. Susanne snuck out of the room and watched him through the monitor. She was hoping he would go right back down. Despite her hopes, he continued to talk and kick around. He became more active than he had just been for his actual playtime. All Susanne could do was laugh. It was the cutest thing to watch him self-entertain. Once Susanne knew a nap was not going to happen, she snatched him up again to give him some more loving. Hopefully, this would make for a long, peaceful night of sweet dreams.

Praying for Owen!

2011-04-15T09:38:00.002-04:00

Today, Paxton's best buddy from the West Coast went in for his heart surgery. We knew all too well the anxiety, fear, and anticipation that comes along with days like these. Scott, Paxon, and I were praying for sweet Owen and his family. We knew he would come out stronger on the other side. Go, Owen, go! We love you little friend.

Three's Company

2011-04-14T02:03:00.008-04:00

The whole crew had such a fun time last night. They were hoping to have more sleep-overs in the future.

Everyone's day started out bright and early. Today, Scott and Susanne were in charge of watching their nephews, Parker and Cole, while Leah went to work. Scott got up around 7:15am to let Leah's dogs out. They had been left to fend for themselves since last night. Susanne entertained all three boys in Paxton's room during that time. Once Scott got back, Susanne whipped up a yummy breakfast. She made scrambled eggs, bacon, and toast. This was all served with a glass of milk and a side of strawberries. Susanne wanted to make sure that everyone started off right. Breakfast was the most important meal of the day.

About an hour later, it was time for Parker to go to pre-school. Susanne was so excited to be his chauffeur. This would be her first time walking him into his classroom and meeting his classmates and teachers. He knew exactly where to go and what to do. Susanne was super impressed. She had a blast.

Scott watched Paxton and Cole until Susanne came back. Susanne was pleased to see that Paxton was down for his morning nap, however, Cole was still going strong. Scott was trying to wear him down so he would fall asleep easier. Susanne gave Cole his bottle and read him a couple of books to clue him in that naptime was nearing. Susanne laid him down and within minutes, he was crying. Susanne decided to wait it out, but after he didn't settle, she had to comfort him. It only took a couple minutes before he was fast asleep in her arms. He managed to stay asleep for two hours.

Paxton woke up from his nap right in the middle of Cole's nap. It was nice that they were taking turns with who was awake and who was asleep. This helped Susanne out tremendously. She was able to get in another feeding and some therapy for Paxton with no interruptions. Parker was dropped back off at the house by a family friend after he was finished at school. Susanne and Parker had some lunch while Paxton finished his feeding. After they were finished, Cole woke up and Paxton was ready to play. Susanne found it challenging to try to carry two babies down the stairs, plus keep a close eye on Parker. She went from a mother of one to a mother of three in seconds. She could see how this could be challenging and take some getting used to.

Susanne was pretty impressed with her ability to multi-task. She was swinging Paxton in his cradle swing, feeding Cole his lunch, and helping Parker put a puzzle together. Watching Cole and Parker opened Susanne's eyes to what is to come with Paxton. She couldn't take her eyes off of them for a minute. There were outlets and electrical cords to worry about. There were breakable items and the sharp edges of the fireplace to avoid. Susanne was starting to realize that everything could harm a child.

Leah showed up late that afternoon. Susanne, Cole, and Parker were in the middle of laying in the grass watching the airplanes fly by when she arrived. Before Parker had to leave, Susanne taught him how she could make him fly like an airplane. She placed his stomach on her feet, held his hands, and forced him to soar in the air. He loved this game.

After a while of playing outside, the Hansen crew headed home. They all had a fun time kicking around and throwing a ball as well as rolling around in the grass. Their departure ended up being perfect timing. As they left, Paxton was just finishing the end of another one of his feedings. Susanne was happy to see that he was wide awake and ready to play. Susanne worked on a variety of therapy exercises with him until he showed signs of exhaustion. It was evident that he was getting a little bit stronger everyday.

Once Paxton got settled for the evening, Susanne cooked dinner for everyone. They enjoyed eating their meal while watching a movie. It was a nice way to end a very busy day.

Poppy Time, Postponed Plans, and Pizza!

2011-04-13T15:14:00.011-04:00

Scott went in to set up Paxton's overnight feeding and decided to change his diaper to prevent him from waking up later in the night. He stayed asleep throughout the entire process. Scott thought he would rub his back for a little bit to make sure he didn't need to burp since he swallowed so much air all of the time. After a while, Paxton wasn't doing much. Scott thought he would be safe to put him back until the morning, but that was not the case. The second Paxton was placed in his crib, he started gagging. So much for trying to avert a crisis.

Poppy was watching Paxton today while Susanne and Scott were at work. Poppy loved his time with Paxton. He enjoyed coming up with creative ways to work on therapy with him. He would do things like give Paxton the leftover bag from the box of Cheez-its he had finished eating so that Paxton could crinkle it between his fingers or place a clean diaper on his face to encourage Paxton to push it away. All of these out of the box ideas were other ways for Paxton to learn and develop. Poppy also enjoyed stretching Paxton's arms and legs to warm his muscles up before playtime. They were the best of buds. Poppy couldn't wait until Paxton was a little older so he could start taking him on some adventures. Poppy had a long list of items that he had lined up to do. Just to list a few, he wanted to take Paxton on walks through the woods, paint a birdhouse, build stuff with a hammer and nails, climb trees, go strawberry picking, and go fishing.

Throughout the morning, things were going smoothly, that is until Paxton peed on Poppy. Paxton thought that it would be funny to catch him off guard. While Poppy was changing his diaper, Paxton sprayed him right in the center of his shirt. If Poppy had a target painted there, Paxton would have definitely hit the bullseye. This was something Poppy had become accustomed to since he now had four grandsons.

When Susanne got home from work, Aunt Leah, Parker, and Cole had come over for a slumber party. It was so nice that all three boys could finally play together and no one was sick. It was so cute to see them all interact. Paxton was mesmerized by them both. He was intently watching their every move. Susanne and Leah knew that they would grow up to be the best of friends.

Susanne and Leah planned to have the boys off to bed by 8:00pm, which would be just in time for them to sit down to watch American Idol. They were going to order pizza to help celebrate the return of dairy and soy back into Susanne's diet. They were hoping to have the pizza ordered early enough that it would arrive right before the show started. Unfortunately, despite their attempts, the night didn't pan out the way they had expected.

Leah got Cole bathed and ready for bed while Susanne read a few bedtime stories to Parker and Paxton. Parker was insistent that he be allowed to hold Paxton during storytime. It was the cutest thing. Parker was always so eager to help and he had such a kind soul.

Once they were finished with the third book, Parker put on his pajamas, brushed his teeth, and got in the bed. It was finally Paxton's turn. Susanne bathed him hoping it would help him sleep better. She gave him a quick massage as she applied his lotion. He always loved this part of the process. Finally, she finished up with his G-tube care and then he was ready for bed. He was one tired puppy.

Paxton was excited because he would get to sleep in his new crib that Gigi and Poppy got for him. Over the last few months, they had been observing how he was outgrowing the cradle that Moppy had let him borrow. They thought that he needed more room to stretch and move around. Poppy and Scott spent the afternoon putting it together so it would be ready for him to sleep in it tonight. Finishing touches were all that was left. After Leah and Susanne put the crib skirt and crib sheet on, it was completed. It looked fabulous.

Poppy got home from work right as they were putting Paxton to bed. It was much later than they had all expected. Poppy took the initiative to order the pizza since they were running out of time. Unfortunately, the first three pizza places Poppy called were already closed. Luckily, the fourth place was willing to sell him some pizza, but the catch was that he would have to pick it up. Done and done.

Eventually, they were able to sit down, eat their pizza, and watch American Idol. The night was not how they had envisioned it, but it was still fun, nonetheless. Anyone knows that once you become a parent, your time is not your own.

The Upswing

2011-04-12T21:21:00.001-04:00

Susanne had to leave extra early this morning for an employee meeting that was scheduled an hour before she started work. Luckily, Scott had taken over Paxton's care from the moment that Paxton and she had arrived last night. Scott ended up having to get up with Paxton a few times over night, but it much less frequently than the two night's before.

Paxton was sounding much better, which was a relief for Susanne. She hated seeing him uncomfortable especially when there was nothing she could do about it. Scott thought the same thing even though he had not witnessed Paxton at his worst. He was solely going off of the descriptions of what Susanne had experienced over the last 72hours.

Scott watched him closely throughout the day to make sure he wasn't being overworked. He understood the importance of rest and recuperation. He remembered how much it had helped him to take it easy when he was so sick just a few months ago.

Scott and Susanne were keeping their fingers crossed that this was the end of the dreaded cold.

Dump The Pump

2011-04-11T23:28:00.001-04:00

Now that Paxton had received his last Synagis vaccine of the series, there was no need for Susanne to continue giving him her breast milk anymore. The pediatrician and lactation consultant made this Susanne's goal to reach months ago. This was supposed to be the end point for her, but she was struggling with this decision. If it were up to her, she would probably continue pumping indefinitely because it had become so ingrained in her daily routine. She also firmly believed that her antibodies were extremely beneficial to Paxton even if he was only getting a minute amount at this time. She thought that it had made such a significant impact in boosting his immune system over the last fourteen months, so why stop now? It had to be one of the reasons, if not THE reason, that she was able to help prevent Paxton from getting a cold or the flu until this past week. According to everyone else, there was nothing preventing her from stopping right now. It became apparent that the only thing standing in her way was herself. For some reason, she couldn't bring herself to stop. It wasn't as easy as she had originally thought it would be. During the last few discussions she had with Scott about this topic, she realized that she had developed this odd relationship with her pumping. It didn't seem right that she got emotional everytime she thought about quitting. She knew she never liked to quit anything, but that wasn't the reason why. All she could come up with was that it had been the one and only tangible thing that she was able to do for Paxton when he was attached to all of those wires and lines in the NICU. It was one thing that she knew Paxton needed from her and something he could benefit from. It was the one thing that made her feel like a mother when she felt like anything but that. She had remembered early on how it was difficult to feel like a real mother when everyone else was in charge of telling her when she could do things for her son. She had to be told when she could hold him, when she could change his diaper, when she could bathe him, and when she could touch him. Also, the fact that she was not able to nurse him due to his medical condition made her feel like she was less of a mother even though that was out of her control. She wanted to do more for him, but couldn't. She wanted to take away all of his hurt. She wanted to take away all of his pain. She wanted to tell him everything would turn out okay. She had spent some of the first few months grieving the loss of the idea she had about the typical process of becoming a mother. She had to adjust to the new idea of what it meant for her to be a mother to Paxton. The pumping had kept her alive. It had kept her going because ultimately it was a gift she could give to her son when there were so many other things she couldn't do for him.

It was all so weird. Why was it so hard to just put the pump down? It should be a relief to her instead of such a difficult decision. She should be focusing more on the fact that it would free up more of her time. She wouldn't have to interrupt her schedule to be a slave to the pump. She wouldn't have to wear special shirts or bras to be able to make it easier and faster to get through the process. Also, she could stop depriving herself of dairy and soy. She had been dreaming of ice cream, Mexican food, cheeseburgers, and pizza since the day she started that diet a year ago. Most importantly, she would finally be able to get more sleep. Her late night dates with Jimmy Fallon could come to an end. She knew that the only way this would work would be to physically leave the pump in VA as she drove back down to NC today. This would eliminate the problem. The temptation to continue wouldn't be there anymore. She wouldn't have a choice in the matter if she was without a pump. She wouldn't be able to make up anymore excuses why she should continue. Instead of pumping and dumping, she would be dumping the pumping. Now if she could just pry her hands off of it and walk away. At the last second, she decided to pump one last time before getting in her car. As she pulled out of the driveway, she shed a tear as she reflected on this bittersweet moment.

Susanne had a six hour drive back to NC with only her thoughts to keep her company. She spent the ride reflecting on the events that had occurred over the last year. By the time she arrived to the house she was exhausted. She told Scott of her brave move today and how difficult it was for her. Before she could say another word, he had a bowl of delicious ice cream shoved in her face. This was an instant reminder that she had made the right decision. Susanne went to bed that night with a big smile on her face. Oh, how she had missed dairy! Maybe not pumping wouldn't be so bad after all.

That's A No Go!

2011-04-11T14:06:00.001-04:00

Paxton had another night of being up every hour on the hour. Susanne didn't even have to put on her glasses to look at the clock to know what time it was. She could predict it without even checking. She knew it was going to be a LONG day especially since she had to drive six hours back to NC. Lord, help them all.

Just like the last couple of days, Susanne had to get creative with where Paxton slept. This morning, he ended up getting the most comfortable laying on the wedge with the boppy supporting his head. Susanne left him there while he received his first feeding of the day. He slept right through it all. It was a rude awakening when Susanne had to wake him up for therapy. Paxton had one more session scheduled before they headed back across state lines. Hopefully, he would be able to dig deep and find some energy. Susanne wasn't expecting much from him, but she still wanted to see if he would feel up to doing anything.

Today, the therapist had another occupational therapist shadowing her. Unfortunately, it was not a great day for her to observe. Paxton was very tired and not interested in doing any work at all. Susanne thought he sounded a little better, but his actions countered that opinion. He didn't do well with therapy. He wasn't interested in doing anything that was asked of him. The entire time they were working with him he was rubbing his eyes and yawning. Near the end of the appointment, he started gagging, followed by projectile vomiting. They all got the hint by that point. They cut the session short for his sake. Susanne was going to try hard to get him to rest up for the long trip ahead of them. She was just hoping that the vomiting episode was the only one for the day. There would be no hope for him if he got sick while she was driving on I-95.

Mommy, I Don't Feel Good!

2011-04-10T23:48:00.003-04:00

Paxton was up every hour last night. He couldn't get comfortable and it was becoming more difficult to breathe. Susanne was hoping to find something that would alleviate this problem because she could tell it was taking a toll on him. His little heart was having to work extra hard because of all of the stress his body was under. Susanne had been warned prior to his second heart operation that if he got a cold, he would probably have to be hospitalized because of the challenges he would face. The concerns were regarding his ability to breathe, the extra strain it would put on his heart, and the low level of oxygenated blood that would be circulating in his system. Once again, Susanne was beyond ecstatic that he had managed to avoid getting sick over the last 14 months. It was just unfortunate that he was sick now. He was in a much better state of health than before his reconstructive heart surgery, but he still struggled more than a child that didn't face the same medical issues.

Susanne's goal for the day was to find Paxton some relief. She started off his morning with sitting him in the bathroom while running a hot, steamy shower for fifteen minutes. By the end of it, it felt like a sauna in there. He didn't seem to mind it. Afterwards, she gave him a warm bath followed by a massage. She applied Little Noses to each nostril and tried to suction whatever she could out of there. She was shocked that not much came out at all. It seemed like it was all collecting in his sinuses and was untouchable. She started up the humidifier in his room to see if that would help. She elevated his bed even more than it already was to see if this would help him to breathe better. She had run out of ideas after that. She was keeping her fingers crossed that something would work. She felt helpless.

Paxton had a therapy-free day. He had not had one of those in a long time. Usually, someone was working with him someway, somehow, whether it be Susanne, Scott, Poppy, or the actual therapist. Today, however, she thought it would be best for him to take it easy and rest up as much as possible.

Aunt Leenie and Uncle Loonie stopped by in the evening to check on the little guy. Uncle Loonie offered to watch him while Aunt Leenie and Susanne went out for dinner so they could catch up. Paxton actually seemed to have some energy that evening. Uncle Loonie propped him up on the couch with his bowl of pasta noodles on one side of him and one of his sensory balls on the other side of him while they watched a bike race. Paxton was more active than had been expected. He spent a long time picking up handfuls of uncooked pasta and placing it next to him. He batted at his sensory ball and pushed it around. He finally tuckered out right before the girls got home. Susanne was just praying that he could stay asleep so they both could get some much needed rest.

Cut Me Some Slack

2011-04-09T22:23:00.009-04:00

Paxton didn't officially settle down until after 1:00am. He was up a couple of times after that on and off. Early this morning, Susanne resorted to sticking him in his bouncer to see if he would sleep better sitting upright. It seemed to help because he immediately passed out. Susanne assumed that it helped him to breathe a little better. It was such a relief that he would actually be able to get some rest. Susanne was willing to do whatever was necessary to make him more comfortable.

A new nurse showed up today to watch Paxton. Susanne spent the morning having the nurse observe her going through Paxton's routine. She was impressed with how quickly the nurse picked up on the skills needed to take care of him. She realized the importance of having people with experience working with him. He had such specific needs that required attention to detail. Having someone that paid extra attention to those little intricacies made Susanne very happy and made her feel more comfortable with leaving Paxton in their care.

Paxton had therapy at 11:00am this morning, which was not normal for a Saturday. The therapist offered to squeeze them in on a weekend since she had to cancel an appointment later in the month. She didn't want Paxton to miss out on one of his six sessions he was allowed per month because she knew how much he needed them. She realized that it would be difficult to try to reschedule for another day during the week because Susanne and Paxton were infrequently in the area. Also, the fact that they would be gone the entire last week of April for a week full of follow-up appointments for Paxton in Boston complicated matters. Susanne was extremely appreciative of her sacrifice.

Paxton slept right up until the time of his appointment. Susanne hated to wake him up, but it was a must. They started the session teaching the new nurse different techniques she could work on with Paxton. Susanne wanted to ensure that when she wasn't available to force him to work and gain strength that he was getting it from someone else. Even though it wouldn't be as extensive as what Susanne could do, it would be something and something was better than nothing. After the nurse was shown a few things, they moved on. They decided to avoid any oral feeding because of the difficulties they had yesterday. They started to realize that maybe it wasn't because he was stubborn, but more so because he wasn't feeling well. Paxton was congested, stuffy, and feeling under the weather. Susanne predicted that this was a recipe for disaster. If he was already averse to anything in his mouth, then the fact that he was unable to breathe well would complicate things for sure. At the end of the therapy session, they knew they had made the appropriate decision. Paxton still stepped up to the plate and did relatively well for the condition he was in.

Susanne noticed a new habit of Paxton's today. He had started to grind his teeth at random times. This was like nails on a chalkboard for Susanne, but there was no way to stop him from doing it. It made her spine tingle and her ears cringe. She was hoping this new found behavior didn't last long.

Throughout the rest of the day, Susanne gave Paxton some extra TLC. She knew he wasn't feeling well and needed his mother's love. Snuggles, kisses, cuddles, and hugs were on the menu for the day.

ADR

2011-04-08T23:41:00.007-04:00

Everything started to make more sense when Paxton woke Susanne up at 2:00am sounding mildly congested. She thought that maybe this was why he had shown evidence of labored breathing yesterday evening at the end of the therapy session. Also, she had noticed that he had started sneezing more than usual and seemed unable to breathe well through his nose. He typically breathed a lot through his mouth anyway, but there was an obvious increase in this behavior. He just couldn't seem to get comfortable. It was hard for him to breathe in any position but upright. It took him two hours to finally get settled down. By the end of it all, Susanne was convinced that she may be up watching the sun rise with him.

Susanne made some careful observations while she held him tight in her arms. She first noted that he didn't have any visible discharge from his eyes or nose. Also, he wasn't coughing, however, he did seem stuffy. Susanne had recently been feeling the effects of the season change. Her allergies sinuses were not thrilled with it being Spring. She thought that maybe all of this could be allergy related. It appeared to be very similar to what he dealt with a couple of weeks ago.

The poor little bug woke up again around 7:30am. This time he was going through his morning ritual of gagging, coughing, and ending with a fountain of spit up. It was a much rougher episode this time. Susanne noticed that what eventually came up and out of his mouth was thick mucus mixed in with his saliva. It was so viscous that Susanne had a hard time clearing it out of his mouth. It just didn't want to come loose. As he would catch his breath from crying, he would suck it all right back in making matters worse. She could tell that he was struggling even more with swallowing because of the consistency of the secretions. Susanne liked to think that there was a positive to every situation. In this case, she was going with the fact that at least the mucus wasn't green. This gave her peace of mind that there was not likely any secondary bacterial infection.

One of Paxton's nurses came over to watch him while Susanne ran over to the rental property. Unfortunately, Susanne and Scott were still dealing with the repairs needed after the water heater malfunctioned and flooded the first and second floors. The actual incident had happened well over two months ago. Susanne was shocked that the repairs took as long as they had. There had been a total of three companies that had to deal with the situation. The first company replaced the water heater, the second company dried out the house, and the third company fixed all of the damage to the flooring, ceiling, and walls. At the end of all of the repairs, the carpets were supposed to be steamed cleaned. Somehow, this got missed. Susanne was meeting a manager out there to assess the situation. The time window that she was given was between 9:00am and 10:00am. They were made aware of her unique circumstance with Paxton and informed of an appointment he had at 11:30am. It was critical for the manager to show up on time because Susanne needed to leave with enough time to make it for his therapy session. Susanne waited five minutes, ten minutes, fifteen minutes, twenty minutes, thirty minutes, and still no sign of the manager. Finally, after waiting fourty minutes she called to see where he was at. He was across town and running late. He said that he wouldn't be able to be there any earlier than 10:15am. Susanne was livid. She would have just rescheduled if she would have known that the window of time meant nothing. Once he was there, he made the process as quick as possible. Susanne headed back home the second he was finished.

Susanne pulled up to the house right on time. Paxton's therapist had just pulled up, so they walked in the front door together. Paxton was still sleeping pretty heavily when they arrived. It took Susanne multiple attempts to get him to open his precious little eyes. She hated waking him up from a deep sleep and then asking him to work on the spot. She was frustrated that she wasn't able to prep him for the session.

Today, the occupational therapist taught the nurse some basic techniques. Susanne was hoping that the nurse could get comfortable enough with some of the therapy skills to be able to work on them with Paxton. This was so she wouldn't feel like she was neglecting him if she left the house to run a few errands or meet up with friends in the future. She hated the thought of Paxton laying around doing nothing if she wasn't there to work with him. Thankfully, the nurse seemed to catch on rather quickly. He felt confident in placing Paxton in sitting and working on tummy time. This actually seemed like it might work.

The second half of therapy today was supposed to be oral feeding. Paxton was pretty tired and irritable for some reason so it didn't work out so well. He kept crying when Susanne would try to offer him anything. He was even resistant to the facial massage, which he had grown to enjoy. It was really sad how stubborn he was being. He was half interested in the oral swab. After a couple of times of suckling on it, he was finished. He pushed Susanne away when she offered him pears and even peaches. She eventually got a spoonful or two in his mouth, but he was holding his tongue back and refusing to swallow. They could all see that his saliva was pooling at the back of his mouth. He ended up drooling it all out including the food that had been offered. They decided to call it a day. Susanne thought that maybe he was tired because he wasn't feeling 100%. She couldn't put her finger on it, but she was certain it would reveal itself within the next 24 hours.

The nurse set up Paxton in his bed for a nap and his next feeding. Susanne thought he would go right down because of the signs she observed at the end of the therapy session. She was wrong! For some reason, he got his second wind. He was kicking around in his crib talking and laughing at himself. Susanne left him alone hoping he would get the clue. She wanted him to rest up before his vaccination appointment scheduled for this afternoon.

Right before they had to leave, Susanne sat Paxton in his bouncer to keep him entertained while she got things ready for his appointment. When they walked out the door, Susanne was bummed to see that the weather had taken a turn for the worse. It was raining heavily, which was not ideal. YUCK!

Paxton weighed 20lb 11oz. He was growing like a weed. For once, Paxton had a straight forward appointment. He just needed to get his last Synagis vaccine and nothing else. Even though it was just one vaccine, it was given in two separate doses. Paxton cried for both injections, but it was short lived. Susanne had her soothing technique down.

Paxton was required to wait in the room at least twenty minutes after the shots were given before he could leave. The nurse wanted to make sure that he wouldn't have an allergic reaction. During that time, Paxton managed to have two dirty diapers. Susanne always hated that she had to carry them home with her since they didn't have a specific trashcan for diapers available. She had thought about just tossing them in the room trashcan many times, but she knew that just wouldn't be nice of her to leave Paxton's scent for others to enjoy.

Once they were home, Paxton fell asleep right away. He napped for a good few hours before he woke himself up sneezing and coughing. He had started to sound congested again. Luckily, he was not febrile. Susanne tried to clear his airway by suctioning out his nose and mouth, but she got nothing. After he would fatigue, he would nap for a short time and then start the process all over. He was absolutely restless and nothing seemed to help other than Susanne holding him in her arms. If she had to, she would hold him all night.

Is Something Following Me?

2011-04-07T23:47:00.003-04:00

Susanne had to be on the road no later than 9:00am because Paxton had a therapy session scheduled for this afternoon. Scott helped with getting Paxton ready and finished assisting Susanne with packing the car. Even though they had gathered everything that they could have last night, the to-do list felt like it was neverending.

Paxton cleared his system a few times before he was placed in the car seat. As Susanne was driving away, she thought that she could smell him again. She stopped dead in her tracks and took care of that business.

No matter what Susanne tried to do, nothing was keeping Paxton cold enough. He was overheated for most of the ride. Susanne had lined his car seat with ice packs, had the A/C blasting, windows were down, and window shade in place. Even his own personal fan had nothing on the sun. The problem was strictly due to the time of day it was. The sun was creeping in on his side of the car. No matter where they were on the road the sun followed them like a dog trailing something. After a few hours into the drive, the sun finally moved to Susanne's side of the care. She couldn't have been happier. She had started to grow icicles off of her nose. She invited the warmth to come right on in.

Susanne had left with plenty of time to arrive to the house an hour before Paxton's appointment. Her hope was that he would be able to take a quick nap before his therapy session. Unbeknownst to her, there was construction all along I-95 North. There were even multiple sections that were condensed to a one lane road. That was just crazy business. They ended up arriving to the house five minutes before the scheduled appointment time. Susanne had just enough time to get Paxton in the house and changed before the doorbell rang.

Paxton did rather well for what Susanne and the therapist had expected. The therapist started the session with a massage of his muscles to help wake them up. There were definitely no complaints on his end. He sat well in propped sitting position and used his hands to hold some of his weight. He even mustered up the energy to lift his head a few times while on his tummy. When he was visibly exhausted from all of the activities he had been asked to do, they moved to an exercise that was less strenuous. They placed Paxton in his high-chair so that he could play with a couple of scoopfuls of his mixed pasta. He didn't last long. He started to tire out pretty quickly. They both noticed that his breathing was heavier than usual and it almost appeared labored. It was at this point that they called it quits. Paxton obviously needed to rest and recuperate from a job well done.

Within minutes of putting Paxton in his crib, he fell asleep. He didn't budge or move the rest of the night. Everytime Susanne went to check on him, he was in the exact position she had left him in.

Back On Track

2011-04-06T13:57:00.007-04:00

Paxton thankfully slept through the night. This was a relief for Susanne and Scott because they both had to be up early today. Scott had a meeting across town at 9:00am and Susanne had to be at work.

Poppy was set up to watch Paxton for the day. He was excited to hang out with his grandson. Paxton woke up right as Susanne was leaving. Poppy played with Paxton on his play gym as he started his first feeding of the day. He was going wild and crazy for his toys. He was kicking around and making noises. He was definitely wide awake from having a good night's rest.

Poppy worked with him during the first half of the feeding, but let Paxton play solo for the last half. It was always so cool to watch him discover things on his own.

Paxton had plenty of dirty diapers within just a few hours of being awake. One of the last ones was a doozy. Paxton started crying while Poppy was wiping him. He was concerned that his diaper rash was getting worse again. He decided that after he was all cleaned, he was going to let Paxton air dry. He took him downstairs to their favorite spot, which was right in front of one of the windows that had the most sunlight. Paxton was mooning the world while his tush dried out. Paxton loved every moment of it and he was so kind not to have any accidents in the process.

Paxton then played in his bouncer. He was getting so great at making the lights and music go off. It was the sweetest thing to watch his face light up when he was successful. It was easy to tell that he was saying in his head, "Did I do that?"

When Susanne and Scott arrived home for lunch, Paxton had just gone down for his afternoon nap. He looked so angelic all curled up and sleeping. He was the cutest thing that they had ever seen.

To their surprise, Poppy had made them a delicious lunch. It was special delivered right to them. They enjoyed their meal while they caught up on the happenings of their mornings.

Susanne's lunch break was over before she knew it. She left Scott and Paxton right as they were beginning the next therapy session. Paxton was working on sitting. He was beginning to be able to hold his position for a lot longer. After a short time of trying to keep his balance, he would crash and burn. Luckily his daddy was there to catch him.

Paxton had a great day full of fun and excitement. It also appeared that he had no problems with getting back on his normal routine. They were still unsure what was up with him yesterday, but they didn't care as long as he was feeling better.

I Don't Want To Sleep, I Want To Bang On The Drum All Day

2011-04-05T22:30:00.001-04:00

Paxton's recent record of sleeping through the night and waking up so peacefully ended last night. He obviously believed there could be too much of a good thing. Scott and Susanne didn't know what was up with him. He had such a rough night last night, but for an unknown reason. He was up every two to three hours from the second he closed his eyes. Susanne had to poke and prode Scott to get up the first two times since she had to work in the morning. She ended up getting up the third time to see what the problem was. After changing his diaper, snuggling him for a minute, and adding a blanket to warm his legs up, he went back down. She wasn't sure how long it would last, but he looked peaceful in the moment.

Paxton continued this trend throughout the day. He didn't go down for any of his naps and he was fighting hard not to go to sleep. Susanne felt horribly that she wasn't available to try to assist with the silly monkey. She ended up staying late at work and didn't even get home until after 8:30pm, which was unusual.

Susanne decided to give a go at it and try to put the bug down for the night. Unfortunately, Paxton didn't fall for it. He still wouldn't fall asleep. It was at that point that Susanne and Scott thought of the quote, "if you can't beat them, join them". They decided to have him hang out with them. He sat at the counter with his daddy, while Susanne cooked dinner. He sat in his bouncer and played while they ate. He even watched some television for some late night entertainment. Once his bolus feeding was finished around 10:00pm, they tried to put him down again. He finally gave in and passed out. They could only hope that he would have a better night.

Steady Improvement

2011-04-04T23:44:00.007-04:00

Paxton woke up again for the second morning in a row without letting Scott and Susanne know. His eyes were open, but he didn't make a sound. He was just laying there so contently in his bed. Susanne wasn't even sure how long he had been awake because he had been so quiet.

She quietly walked into his room and peered over his crib. The moment his eyes connected with hers he smiled so big. He did end up gagging once when she picked him up, but he recovered nicely.

He started his morning off keeping his mama very busy. He peed then pooped, then peed again. Susanne decided to let him air dry for a while to try to help resolve the ongoing diaper rash. Not even five minutes into Paxton being diaper free, he pooped back to back and made a whopping mess. Luckily, Susanne had predicted this kind of explosion and put a couple layers of towels underneath him. Just as she had finished cleaning up the disaster area, poor little Paxton sneezed with such force that a small amount of poop came out. This was a sure sign that Paxton's diaper free time was over.

Paxton started his morning with some tummy time and propped sitting in front of the television. He always seemed to work so much harder if he had Sesame Street to distract him. It encouraged him to hold his head up higher and longer than anything else that Susanne had previously tried. Susanne was excited to see Paxton stay in propped sitting on his own for at least twenty to thirty seconds with no help. He was also visibly putting more weight through his hands and she could tell that his core was getting stronger. Susanne was truly impressed with his continued improvement. He was building mucsle strength slowly, but surely.

As the day progressed, Paxton was showing signs that he was getting sleepy. He couldn't seem to get comfortable though because he was overheated. Ever since the weather had warmed up outside, he was having trouble regulating his body temperature inside. If the thermostat was any higher than about 72 degrees, then he was sweating. Susanne stripped him down to his diaper and he finally shut his eyes.

After waking up from his nap, Susanne set him up on his playgym for him to work on reaching and grabbing at his toys. These motions helped Paxton to work on bringing his arms to mid-line, which strengthened his chest muscles. These were definitely some of his weakest muscles because he had previously had his chest opened up twice for his heart procedures. If given the right toy, he had no problems going for it. The funniest thing was that one of the things he was most fascinated with was the multi-colored beaded necklaces that his therapist gave him. It helped that they were easy for him to grab ahold of. He loved to yank and pull and tug them around. While busy at play, he laughed a lot. He seemed so excited about everything. Susanne didn't have to work hard today for a giggle. This always made her feel great.

As the evening set in, Susanne made Paxton work a little more on sitting, head control, and tummy time. He appeared to have the energy, so she wanted to take advantage of it.

After a good workout, she gave him a nice relaxing bath, followed by gentle massage. To help him wind down, she read him a few books. She decided to offer him the oral swab soaked in water to see if he would suckle on it. He tended to suckle with nothing in his mouth as a soothing mechanism for falling asleep. This would not only encourage him to suckle on something, but also to reinforce his suck swallow reflex. Her hope was that the more practice he got, the better chance he would have with making a major turn around with his ability to take things by mouth.

It was all working out as planned until Susanne laid Paxton down. He kept tossing and turning because he was too hot. Once Poppy changed the thermostat again to a cooler temperature, Paxton fell right asleep. Susanne feared it was going to be a long summer for the bug. If only she had a walk-in freezer for him to sleep in....hmmmmmm.

Susanne cooked up a mean meal on the grill for dinner. While the London Broil was getting the perfect sear, Scott and Susanne sat outside drinking a beer and enjoying the breeze. They couldn't think of anything more relaxing and perfect.

Anything but the Sabbath

2011-04-03T23:49:00.002-04:00

Susanne spent the morning cleaning. She started in her room and then moved to Paxton's room. She did all of this while Scott went to the gym. He decided to run there which was about 2.5 miles away. He then worked out for almost an hour and then ran back home. This gave Susanne plenty of time to do what she was doing.

For part of the time while she cleaned, she set Paxton in his bouncer to play. She quickly realized that he was outgrowing it. As his body would shift downwards some, his feet could touch the floor. Susanne would have to get creative with new places for Paxton to safely play.

Later that evening, they all three walked the dogs. It was nice to get out of the house and Paxton wasn't complaining. Paxton loved getting fresh air as long as the sun wasn't directly in his face.

Once Paxton was down for the evening, Scott and Susanne watched a movie. This was one of their favorite activities to do together and it was a nice way to escape for a little while. Susanne just prayed that she could stay awake.

Count and Learn

2011-04-02T23:47:00.002-04:00

It was so nice to see that Paxton woke up so sweetly this morning. He was bright eyed and bushy tailed with no evidence of discomfort. He laid peacefully in his bed until Susanne went in to get him. He seemed very content with staring at the ceiling until she got in there.

Susanne worked more with Paxton on sitting and tummy time. It was clearly visible that he was getting stronger. He did great with both tasks especially with lifting his head up.

Paxton got a lot of time with his daddy today. They played with one of his new toys that he got for his birthday. It was a count and learn school bus that had four different balls with animal faces on them that made the appropriate sound as they were dropped into the bus. The balls would then roll throughout the school bus and line up near the door to exit. Once the door was opened, they all came tumbling out. Paxton enjoyed watching his mommy and daddy do this over and over. One day, Paxton would be able to do it all by himself.

Paxton and Susanne decided to get some fresh air. They ended up taking the mail to the mailbox as a means to do this. Susanne didn't want Paxton out in the sun too long, so this seemed like a perfect way to limit his exposure.

By the time they got back inside, Paxton was tired. Susanne put him down in hopes that he would go down right away. Luckily, he fell asleep over the lunch hour and stayed asleep for hours. Susanne caught up on some things while he was in la-la land.

Once he woke up, Susanne started him off with easy tasks so that he could gradually wake up. He played on his playgym batting at all of his toys. He got pretty crazy with it all. Once he was able, she worked with him on sitting again. She was determined to get him to sit up on his own as soon as possible.

By the evening, Paxton wasn't tired. He wouldn't go down for the night no matter what they tried. They decided to keep him up with them while they sat and watched some television. They were hoping he would tire himself out. Everytime Susanne looked over at him he was laughing and smiling at his daddy. He was having a grand old time. Once it got to be past 9:00pm, they knew he should be put to bed. He closed his eyes, but still moved his head violently from side to side. Eventually, he gave up the fight and fell asleep. It always helped for him to be exhausted.

Car Trouble

2011-04-01T23:59:00.001-04:00

Susanne was supposed to watch her nephew Cole today while Leah went to an ophthalmology appointment. She texted Susanne early in the morning to let her know that she had to cancel her appointment because Parker had become ill over the course of the night. It seemed like everytime Susanne was scheduled to try to help Leah out in some way, one of her children got sick. This was so strange.

Susanne decided to push Paxton a little harder today. She forced him to sit on his own in a propped sitting position. He was able to hold himself up for about 20 seconds without any assistance. This was such an improvement from what he had been able to do in the past. This definitely was cause for celebration.

Over the course of the day yesterday, Scott noticed that his car was giving him trouble. It was actually Susanne's car originally, but they had to switch cars after Paxton was born. They didn't think that it would be safe for Paxton to be squeezed in the back of the two door Eclipse in a bucket seat. The car had been good to them for many years. It had only recently caused them trouble. Last year around this same time, the car had a bunch of repairs. They were hoping it wasn't as involved as it had been back then. Scott depended on that car to get around. It would be difficult for Susanne and Scott to share their other car because Susanne and Paxton were still traveling back and forth to Virginia. The other major concern was that they were broke. This kind of misfortune always seemed to occur at the most inopportune time. They were hoping that all of this was just an April Fool's Joke! One could wish right?

Susanne had to follow Scott over to the car dealership to drop off the car. They would have to figure out how they would manage getting to and from place to place until it was fixed. They were hoping for a quick fix. If it wasn't fixed by the time Susanne had to head back to Virginia, she was going to check to see if her sister had an extra car that Scott could borrow. They hoped that it wouldn't have to get to that point.

No Drive Zone

2011-03-31T23:00:00.002-04:00

Susanne was thankful that today she didn't have to travel back to Virginia. It was nice to finally catch a break from all of the back and forth. She didn't regret living out of a suitcase one single moment, as long as it was still the best thing for Paxton. She knew he still benefited from seeing the same pediatrician, cardiologist, and therapist that had been with him from the beginning. There was a lot to be said about knowing Paxton and his medical history through and through. Susanne knew that with any new doctor, it would take a very long time for them to even scratch the surface of what Paxton had been through and what he needed. At this time, Susanne was not willing to risk any kink in the chain. She had worked too hard to get to where they were at these days regarding Paxton's care. She wasn't sure about a lot of things, but she was certain that she wasn't ready to start her search all over quite yet.

Milestone of the day: Paxton's other incisor is becoming visible.

Live In the Moment

2011-03-30T14:55:00.001-04:00

Susanne had a moment of clarity today. She took time to remember that right now was all that anyone had. There was a lot of time wasted worrying about the "what ifs" and the "what might have beens" of life, but that was useless. She knew that it was critical to live in the moment. Not the past, not the future, but the now. The reason was that no one could change what had already happened and no one could be certain of what was yet to come, but one could control their thoughts and actions of the present. It was so important to focus on what was right in front of you and to never take for granted what you had. It was so easy to get caught up in what was wrong with the world instead of the blessings before your eyes. She wanted to strive to be an eternal optimist. She wanted to continually celebrate the fact that Paxton was having more good days than bad. There was so much to look forward to and she was excited. Life was truly worth fighting for...she just need a reminder from time to time.

Mystery Pain

2011-03-29T12:46:00.001-04:00

Even though Paxton and Susanne got in late last night, Paxton didn't sleep well. He was even up before Susanne's alarm clock to get ready for work, which was unusual. Susanne was startled by Paxton's cry from the other room. It was the loudest, most distressful sound she had ever heard him make. She popped right up out of bed to see what was going on. She thought he had to be hurt or maybe even fell out of his crib somehow. When she checked on him, he still had his eyes closed. It was like he was having a night terror or something. She couldn't figure out if he had refluxed causing a burning sensation in his esophagus or was it an upset stomach from gas that had built up. She first woke him up so that he could come to and realize that his mommy was right there for him. She tried singing, talking sweetly, rubbing his back, burping him, rocking him, but nothing worked. She had to call for help because she had no access to anything that she needed and Paxton was still connected to his feeding. Scott eventually heard her and came to the rescue. He brought the supplies in for venting his G-tube to relieve any gas that had built up from him swallowing air. After that didn't provide any relief, she tried a combo of Little Noses drops followed by suctioning out his nasal passages. Still no response. They couldn't rule out the possibility of it being pain from teething, but that would be odd since he hadn't been like this before. Susanne and Scott just had to wait it out. Paxton eventually ran out of steam and fell back asleep. They would probably never figure out the mystery, but they were just glad that he was peaceful again. They couldn't think of anything they hated more in the world than their sweet angel in pain.

What A Difference A Year Makes!

2011-03-28T23:58:00.002-04:00

Susanne woke up this morning remembering what a blessing Paxton was in her life. It had been one year ago exactly, that he got to come home from the hospital for the first time. Susanne reflected back on those memories and smiled. They had all come such a long way and she was so proud. Paxton had reminded her daily to push herself beyond what she thought she was capable of. He reminded her to fight even if there was no fight left. He reminded her to celebrate the small things and keep focused on what is truly most important. Paxton was a true inspiration of faith, hope, love, and perseverance.

Susanne had to change Paxton only once overnight. Thankfully, she caught it before he made a mess. He ended up sleeping until 9:00am, which gave Susanne hope that he would be wide awake for therapy this morning. She reemphasized to Paxton the importance of him not making a mess this morning since she had run out of laundry detergent yesterday. She was certain he understood the three simple rules, which included, 1. No peeing anywhere, but in his diaper, 2. No pooping anywhere, but in his diaper, and 3. No vomiting or spitting up of any kind. Things weren't looking too good when Susanne changed six diapers within one hour. He had managed to keep all of his pee within his diaper, as previously requested, until he thought it would be cute to pee on his mommy. He managed to keep all of his poop within his diaper, as previously requested, until it smushed out of the sides onto his outfit, crib sheet, and mattress pad. Susanne decided that she would just have to bring the huge pile of dirty laundry with her to Gigi and Poppy's house for operation clean-up.

Before they could head back to NC, Paxton had a therapy session scheduled that morning. The therapist brought something new for Paxton to play with today. She had a tupperware full of different types of pasta, popcorn kernels, and colorful toys. She first had him in a sitting position and encouraged him to grab at the different textured objects with his hands. He really seemed interested and would rake and grab at the items. After he was allowed to do this for a while, she moved on to placing his feet in the bin. He seemed less thrilled with this task. It was almost like he was trying to avoid that unpleasant touch experience. This activity was supposed to help with the sensory input to his brain and make him less sensitive to the things around him. The goal was to work on sensory integration, which refers to how information provided by all of his senses are used by his brain to comprehend his surroundings. Hopefully with more time, he would become more and more comfortable with it.

Susanne and Paxton's therapist worked on tummy time, propped sitting, and rolling with Paxton. He always did best with tummy time on his exercise ball because it wasn't as strenuous for him. He was pretty exhausted after working so hard. He really did a great job today.

Susanne tried to put him down for a nap while she finished up things she needed to get done around the house before they headed out. Even though she knew he was tired, Paxton was not feeling it. She ended up setting him up on his playgym to hang out while she finished getting everything ready to go. It took her over four hours to get to a point where she felt like she could leave. The process seemed to continue to get more and more involved. She had to empty trashcans, clean bottles, clean dirty dishes, scoop cat litter, fill cat feeder, sweep the floor, fold dry laundry, pack the car, prepare formula, set up continuous feeding for the drive, pack medications, pump, and so on. Paxton was doing great entertaining himself until Susanne heard him from the other room. He decided it was a good idea to continue the trend of rule breaking and end with one unpredicted bout of spit up that landed everywhere, including in the center of his third outfit of the day. Just as Susanne got him squared away, he passed out in the middle of the floor. He got about an hour of sleep before Susanne loaded him in his car seat. It wasn't until around 4:30pm before they were on their way. Susanne prayed to the traffic Gods that they wouldn't run into the rush hour mayhem.

A Day Full of Surprises

2011-03-27T23:37:00.002-04:00

Today Paxton's nurse was supposed to arrive around 8:30am to watch him all day. Susanne had a surprise baby shower to be at across town by noon. Luckily, Scott was able to help a little bit with Paxton's care so that Susanne could still try to be on time.

Susanne called a couple of times with no response. She finally reached the nurse at 9:30am to learn that he was out of town. He had thought that Susanne had mentioned at the last visit that she didn't need him on this day so he made other plans. Susanne was confused about where the miscommunication had occurred, but there was no reason to dwell on what she couldn't change.

She tried calling Moppy to see if she could watch the little guy, but she couldn't be reached. Susanne knew she was probably in church and would be hard pressed to make it over to the house in time anyway. She had thought about asking Scott to hang around before heading back to NC, but she knew that she would be out for hours and that wasn't really fair. He had a six hour drive ahead of him and he worked the next day.

She finally came to the conclusion that she needed to take Paxton with her. She hoped that he would crash the party. Her gut was telling her that all of her friends would actually be delighted that he was there. The majority of them required a Paxton fill regularly and this would cure them all.

Susanne had her work cut out for her. She had to take time to prepare and pack two feedings, medications, enteral pump, enteral bag, charger, fully loaded diaper bag, cooler with ice packs, toys, blanket, change of clothes, carseat, stroller, and the kitchen sink. She was hoping in the midst of packing up all of his stuff that she didn't forget the baby gift or camera.

Luckily, she made it out of the house alive. She wasn't sure she would make it on time though. She hated the thought of being the person to ruin a surprise. She kept in close contact with the hostess of the party to prevent this from happening. Even with getting lost and turned around a couple of times, she made it before the woman of the hour. She was thankful that Julie was running behind as well because they all got to walk in together.

The baby shower went well. Everyone got there on time and Cory was surprised. There was lots of good food, fun games, great gifts, and fabulous company. The one thing that occurred as a result of the party was that there was major baby fever spreading throughout the room by the end of it. Crazy as it sounds, every single woman that had previously had a child, wished that they could be pregnant all over again. They hadn't really thought it through very much, they were just running on straight nostalgia.

One weird occurrence that happened at the shower was that one of Susanne's friends got almost the same identical gift that she had purchased for Cory. Originally, Susanne thought that it was just a mere coincidence that she saw the exact same gift bag in the pile of presents when she arrived. When Cory started opening that gift and pulling out the exact same receiving blankets, cute outfits, etc., Susanne surely thought she was being punked. This was just too strange for words. Thank God for gift receipts.

Susanne and Paxton got on the road at a decent hour. She thought for sure things would be smooth sailing from here. She definitely spoke too soon because she ended up getting lost on the way home as well. She vowed never to take 495 again. They just weren't destined to get along.

Paxton had done extremely well all afternoon, but things changed quickly once they got home. Just as Susanne was trying to get Paxton out of his car seat, he spit up all over himself and managed to get her in the process as well. It wouldn't have been such a big deal if it hadn't also showered the entire car seat lining, car seat straps, and buckle. It was always such a big production to disassemble that monster. Susanne was nervous when she used the last bit of laundry detergent to wash all of the dirtied items. It was asking a lot of Paxton not to make a mess before getting to Gigi and Poppy's house tomorrow night. She would just have to keep her fingers crossed.

Paxton needed a bath pronto! It would not only make him smell better, but hopefully help him to get settled for the night. Aunt Leenie came over for a visit and was thrilled that this wasn't the case. Paxton was trying hard not to close his eyes. He was restless and talkative. This was the perfect scenario for Aunt Leenie to be able to spend some time with the monkey. She got to hold him for a while and play with him a little bit. Once he finally fell asleep, they spent the rest of the night having a heart to heart. They got so carried away in conversation that they didn't even eat dinner until 10:00pm.

Do Over

2011-03-26T23:20:00.001-04:00

Paxton was truly sleep deprived from yesterday. He went to sleep around 6:30pm last night and didn't wake up until after 8:00am. He managed to sleep straight through the set up and breakdown of his feedings, medications being given, and diaper changes. Nothing phased the tired fellow.

Susanne spent the morning playing with Paxton and incorporating little bits of therapy here and there. She would be flying solo for most of today because Scott had traveled to Pennsylvania yesterday to visit with some of his old co-workers from his internship.

Susanne invited Julie over so that Paxton and his best friend Caleb could have a do over. The first time they had ever met, Caleb was not too thrilled and it scared Paxton. They both ended up crying. They were both hoping for a much smoother introduction this time.

They decided to enjoy the nice weather outside and go for a long walk with the boys. Caleb was bundled up in a cute hat, mittens, and toasty blanket while Paxton had just a receiving blanket covering him. Susanne was still shocked at how easily overheated Paxton got. She, for sure, was the complete opposite. They both tried to put baby sunglasses on them to protect their eyes, but they stayed on less than two minutes. Both of them seemed more aggravated with them on, then the sun shining in their eyes. They were hoping they would outgrow this at some point because it would really help protect them from the harmful rays and they made them look super cute.

After their walk, Caleb and Paxton got to have some face to face time. They definitely enjoyed each other's company a lot more this time. There were even a few smiles here and there. Susanne and Julie knew that this was the beginning of a wonderful friendship.

Scott returned home just in time to get ready for their evening plans. Scott and Susanne were going to meet some friends out for dinner and drinks while Moppy watched the bug. Moppy loved getting alone time with her sweet grandson. She chomped at the bit to see him anytime she could especially since they spent most of their time in NC these days.

She was delighted to see that he had grown so much and that he was making little bits of progress everyday.

Trust and Hope With a Side of Wait and See

2011-03-25T04:05:00.007-04:00

One could probably guess how Paxton's morning went. He woke up gagging, so Susanne went to comfort him and try to get him settled down. It was always a race to see how quickly she could make it into his bedroom to try to prevent a volcano of vomit. Even though he was older and able to swallow a little bit better, she still worried about hm aspirating.

Once he was settled, she set Paxton up in his bouncer to allow gravity to help settle his stomach while she prepared his first bolus feeding of the day. The second she got downstairs, she heard him gagging again. By the time she reached him, Scott had come to the rescue. This was just another reason why it was nice to be together as a family again.

Susanne and Scott both had things on their schedule for this morning. While they were getting ready for the day, Paxton played quietly by himself. Susanne was hoping he would save up all of his energy for therapy.

Today they worked on oral motor development. Susanne and the therapist were thrilled that he was still taking a liking to the oral swabs. It not only encouraged a great suckle response, but also it provided him with little drips of water that forced him to practice swallowing.

After they warmed up, they moved on to offering a variety of food. The apples were the thinest in consistency, followed by the peaches, and ending with the thickest option which was peas. Paxton used to do the best with organizing and swallowing the thinner pureed foods, but now he seemed to do better with the thicker options. When Susanne offered him the apples, it prompted an immediate gag followed by vomiting. Once he recovered and regrouped, she moved on to the peaches. This also prompted a gag response followed by vomiting. Finally, she tried the peas. He handled a few tiny spoonfuls well, but still took a long time to organize in his head what to do with it. They didn't want to push him over the edge, so they stopped the session early. He was definitely tired by the end of it. It didn't help him out either that he didn't take his usual morning nap. He was yawning, head thrashing, and crying by the end of it all. Susanne knew she needed to put him right to bed because he had a full afternoon.

He ended up napping for about an hour before Susanne had to wake him up to head to his cardiology appointment. Paxton's usual cardiologist was unavailable, so he had to be seen by someone else in that practice. Susanne chose someone that had previously met Paxton a few times and knew his case well. She picked the doctor that she remembered really liking from Paxton's stint in the NICU. He stood out to her because he really took interest in her profession, but even more so in Boxers. He owned a few Boxers of his own. They had previously had multiple conversations revolving around this wonderful breed. She didn't know if this was the right approach to choosing the next best person to evaluate Paxton, but she at least felt like she knew him personally and trusted him with Paxton's care. This, to her, was most important when making such a decision. She believed in a strong doctor-patient-parent relationship. John Maxwell said it best when stating, "People don't care how much you know until they know how much you care". Moral of the story, trust goes a long way.

Paxton weighed 20lbs 2oz today. Even though he still remained in the less than fifth percentile category for his age, he was at least still gaining weight. After doing a complete physical exam, the cardiologist thought that Paxton looked great. He was impressed with his oxygen saturation levels, his skin color, and capillary refill time. He requested an echocardiogram of his heart to just ensure that everything was looking as good internally. He had just had an ultrasound done a little over a month ago at Children's Hospital Boston, but supposedly that is a long time in their world. The doctor's hope was that he would find evidence that the right ventricle had begun to grow with Paxton and was doing more work.

Susanne entertained Paxton while he laid on the table for his heart ultrasound. He was always such a good baby for all the poking and proding he received. He didn't even cry once this time and even almost fell asleep.

After giving the doctor time to review the results, he came in to give a status update. The cardiologist felt like the right ventricle didn't appear to have grown much in size, but there was a small amount of blood being pushed by the right ventricle up into the pulmonary artery to go to the lungs. Currently, the majority of the blood reaching his lungs to become oxygenated was still coming from the Glenn shunt that was placed in October. The hope was that over time, the right ventricular muscle would wake up and start doing more of the work. If this didn't occur over a short period of time, Paxton would be required to have another heart procedure called the Fontan procedure. This would mean that both of the major blood vessels that bring all of the blood back from the body to the right side of the heart to be pushed to the lungs for oxygenation would be directly connected to the pulmonary artery. This would cause the blood to pushed directly to his lungs and bypass the right side of his heart all together. For the moment, it would be more of a wait and see process. There was still time for hope.

Susanne got a lot of other great information from this visit. She learned that Paxton would be on Aspirin indefinitely to help prevent clotting, which was a bigger concern since he had the Glenn shunt in place. More than likely, he would also be on the diuretic, Lasix, long term to prevent fluid overload and congestion to the liver and lower extremities. Susanne was reassured that if he was showing evidence that his heart was failing and fluid was backing up, it would present itself in his abdomen and liver. Due to the Glenn shunt, there would be no evidence of any swelling in his head and upper extremities. The Captopril medication was not being used as an antihypertensive, but more so for decompression of the heart. It was a blood vessel dilator to help the blood flow more smoothly and allow the heart to pump blood more efficiently. Paxton may not need to be on this medication forever, but he required it currently. As far as the damage to the brain that was pointed out from the MRI, no one could say for sure if it was due to a congenital issue or from all of the anesthesia he had been under for his multiple surgeries. A major factor in all of this was that Paxton had been on a heart and lung machine twice before during his two open heart surgeries. Most people who undergo a heart operation go on this machine because of the difficulties of operating on a beating heart. The purpose of this machine is to allow the patient's blood to bypass the heart and lungs all together and get oxygenated and reinfused into their body by external means. This alone can contribute to immediate cognitive decline and risks for mini strokes. The long term mental damage in a child is never known until he or she is older. Susanne decided that this was yet again another thing that she would not worry herself over. She would rather just throw it on top of her long pile of "wait and see".

Paxton's nurse was supposed to watch him starting at 2:30pm. Due to having to reschedule his cardiology appointment from about two weeks ago, Susanne moved the time to 4:00pm. Susanne truly thought that they would be finished with the cardiology appointment within two hours and have enough time to make it home. Unfortunately, this was not the case. The heart ultrasound took an hour alone. When she finally got on the road and was heading home, it was poor timing. It was rush hour traffic and she was in the heart of chaos. She called the nurse back to change the time to 4:30pm and then again to 5:15pm. Time just kept slipping away from her. She finally made it home and got Paxton settled. Once he was sound asleep, she headed out again to run errands while the nurse watched over him. It was nice to get some things done that she had been putting off for a long time. By the end of the night, she was ready to crash herself. Paxton had the right idea.

Postponed Trip

2011-03-24T23:34:00.002-04:00

Paxton's appointment for today ended up being cancelled due to the issues with the insurance. They could not get an approval for his vaccine so there was no need for him to come in. This actually worked in Susanne's favor. This meant that she would not need to get up extra early to get on the road. Now she could sleep a little longer and there was no rush to head out.

Scott was able to help Susanne pack before his class. An extra pair of hands was always in demand. Even with the added help, it was still a production to get out the door. For some reason, living out of a suitcase had not become any easier.

Susanne finally got on the road around 12:30pm. It was a lovely drive for once. The weather was nice and she was not sleepy at all. Paxton did well also. He enjoyed looking out the window at the scenery. It was an added bonus that the sun was out longer especially with her leaving later than she was used to. She really struggled to drive at night so this was helpful.

Susanne got home and got settled in. She was excited to be in her own home, in her own bed, and watching her own television. The kitties were excited too. They had no issues with lounging around with her.

Right as Susanne was about to fall asleep, she heard someone come through the door. She was scared at first until she saw that it was Scott. This was the perfect surprise. There was always room for one more in the bed.

Are We In Rio?

2011-03-23T23:28:00.002-04:00

Paxton was having some issues with regulating his temperature now that it was warming up outside. Even though it was comfortable in the house for everyone else, Paxton didn't agree. He was hot and sticky just like the humid weather. Susanne could just foresee another summer of Paxton living in just his diaper. He was becoming a nudist slowly, but surely.

Paxton had his usual day of playtime mixed in with therapy. When Susanne was home from work over lunch, she really worked on trying to get him to have better head control and work on him being able to sit on his own. It was a slow process, but there were small glimmers of positive improvement that she could see daily. It was always helpful for someone that didn't see him daily to observe his progress. They could usually pick up on more of the changes he had made since they could take a step back and look at the big picture.

Paxton continued to make a variety of cute sounds throughout the day. It was so interesting to witness him discover the new noises he was making. He must have been using it as a distraction technique for Susanne because there were multiple times when she would look down at catch him grabbing at his G-tube. This was not a good habit for him to get into. It was one thing for him to pull out his nasogastric tube, but his G-tube would be a whole other story.

When Susanne got home in the evening, she decided to put Paxton on the exercise ball to work on tummy time before bed. She turned on the TV to try to encourage him to look up. She was shocked and amazed to see how quickly his head popped up when a commercial for the new movie, "Rio" came on. She had never seen his head held up so high. Any personal trainer would be impressed with his back extension. Susanne knew she would have to try this again. This not only helped to strengthen his muscles, but also take his mind off of the task at hand.

By the end of the night, Susanne realized how overwhelmed she had become with the challenge of finding Paxton a new primary insurance. It had not been an easy task thus far. Scott and Susanne knew they would have to make a decision within the next couple of days to make the cut off window for coverage. There wasn't any option that was great. No matter what avenue they chose to go down, they needed to make sure that it was the best choice for Paxton no matter the cost.

With all of the stress that Susanne had been under lately, she had no energy to pack for the trip back up to Virginia tomorrow. Instead of forcing the issue, she decided to take a load off. The more appealing option was to sit down and hang out with Poppy and Scott over a nice cold beer.

Pollen-palooza

2011-03-22T23:30:00.003-04:00

Paxton woke up gagging this morning. His daddy came to his rescue...after Susanne had to wake him up, of course. Scott still slept like a rock even after getting adjusted to having Paxton and Susanne around a lot more. As Scott was tending to Paxton's needs, Susanne got ready for work.

While Scott got ready for his class this morning, he sat Paxton in front of the TV to watch Seasame Street. It was becoming part of his routine on certain days. Scott decided not to sit him directly facing the television. Instead, he faced his bouncer parallel to it. The purpose of this was to try to strengthen the muscles in his eyes. He was aiming for Paxton to be forced to look out to the side. It seemed to work really well.

After Scott left, Poppy and Paxton hung out for a while. Poppy entertained Paxton with a variety of toys that would force him to not only be visually stimulated, but also give him something tactile to touch. Poppy was always inventing creative ways to get some sort of therapy into Paxton's day.

Paxton was sleeping by the time that Susanne got home for lunch. She loved watching him sleep so peacefully. He had the sweetest face.

Scott got home shortly after Susanne. He was taking over for Poppy for the rest of the afternoon. Susanne didn't get to hang around much either because she had to head back to work. He worked on some tummy time and sitting. He encouraged Paxton to reach out for his toys. Scott was fascinated by the different sounds that Paxton was making. He would start off by making noises that sounded more nasal. This was usually when his tongue was pulled back and hitting the roof of his mouth. Scott did a series of mouth exercises and tried to get Paxton's tongue to lay down better. Once Paxton figured out what Scott wanted him to do, the noises that were coming out sounded completely different. Scott was certain that Paxton would be saying "ma-ma" by the end of the week. After about an hour of serious playtime, he was slowing down.

Scott ended the day with giving Paxton a nice warm bath. Paxton always loved this activity. Scott thought that afterwards, he would settle right down and fall asleep. Unfortunately, this was not the case. He twisted and turned. He squiggled and squirmed. It took over an hour for him to finally close his eyes.

He slept soundly for hours right up until Scott was setting up his overnight feeding. It was then that Paxton woke up sounding congested. He sounded like he was having difficulty breathing through his nose. Scott had to apply Little Noses to each nostril and then suction him out. He immediately felt better once this was done. Susanne and Scott thought that it had to be related to the season change. They both were sure he was feeling the effects of all of the pollen. The sneezing, congestion, and itchy eyes were causing them all to feel miserable. Hopefully, Paxton would adjust to the outside conditions quickly.

Wild Man

2011-03-21T23:00:00.001-04:00

Scott was in and out all day. He had two classes to teach, one of which was an hour and a half long. It was nice for Paxton and Susanne to see him when he was around, but it was few and far between.

Susanne took today to really push Paxton. She worked with him a lot on tummy time. He was slowly, but surely gaining more strength. The best way to get him to look up was still using the television as the focal point. Paxton couldn't resist the mesmerizing appeal of Elmo.

After working Paxton hard, Susanne placed him in his bouncer for play that would take less effort on his part. Susanne thought that he would just try to bat at the toys in front of him to engage the lights and music. Instead, Paxton was a wild man. He was moving around so much. He was pulling his legs up to his chest and kicking like crazy. Susanne knew he was getting a good ab workout.

As he was slowing down, he was putting his hands to his mouth and suckling. This was Susanne's cue that he was sleepy. He was making the cutest little sounds as he was falling into a trance. Shortly afterwards, he was gone. Susanne used this time wisely to get some things checked off of her "to-do list".

Excited Return

2011-03-20T00:00:00.002-04:00

Unfortunately, Susanne didn't sleep well. She was up every three hours worrying about Paxton. It was difficult for her brain to shut off because she was so used to
taking care of him. She was super excited to get home and see him.

For breakfast, Scott wanted to take Susanne, Aixa, and Anthony to an Italian pastry shop for some sweet treats. Scott had been there before with Poppy and really fell in love. He was most excited about having Aixa try the cannolis because he knew they were her favorite. It wasn't until they rolled up to the front door that they realized that they were closed on Sundays. They were beyond bummed.

The next place they stopped at was a quaint little restaurant that was serving brunch. The kicker was that they only took cash which they were out of at that point. They ventured down to see what restaurants were along the beachfront. They came up with nothing. After wasting a bunch of time, they decided to settle for a chain restaurant and call it a day. It ended up being a sports bar that was featuring the Carolina game. Three of the four of them had attended NC State so this was a recipe for disaster. They were definitely rooting for the other team, it didn't matter who it was. It got really rowdy in the restaurant, but they survived. The entertainment was great, but the food was even better. Most of them built a burger, which ended in success. They were sad when their time had come to an end. They wished they could make the weekend last a little longer. They were hoping to see each other again soon.

Susanne and Scott were sad to see Aixa and Anthony go, but they were excited to head back to see Paxton. When they finally arrived, Paxton was playing on his playgym. It was short lived before he was showing signs of being tired. It was almost like he waited to fall asleep until they had returned home.

Later that evening, Paxton was ready to play again. He was making a variety of noises with his mouth. They were thinking anyday now, he should be forming words. He was also exploring his mouth a lot more with his hand. In the past, he would suckle on his arm. It slowly progressed to him suckling on his hand and most recently, suckling on his fingers.

Paxton got active at the end of his play session. He was kicking around and laughing quite a bit. He thought it was really funny when his feet were placed into his hands. He was intrigued by his wiggly toes. Hopefully, he would be able to do this on his own soon without any prompting.

Scott and Susanne spent the rest of the night getting back into the swing of things. It wasn't long before they were enmeshed back into Paxton's routine. It felt good to be home.

Extreme Super Moon

2011-03-19T10:24:00.002-04:00

Susanne and Scott were headed to Wilmington for the afternoon and evening. They were excited about Aixa's birthday celebration, but they were having a difficult time leaving Paxton. It never seemed to get any easier.

Paxton would first be under the care of his Aunt Leah, then his Gigi, and then both Gigi and Poppy. They were all aware that they needed to have their phone on them at all times. Susanne would call in for updates and she wanted them to call if they had ANY question, no matter how small.

They arrived in Wilmington around 1:00pm and met Aixa and Anthony for lunch. To help break them in, Susanne and Scott ventured out and had Bloody Mary's to start their day per Aixa's request. It was the first time that Scott had ever had one and the first good one that Susanne had ever had. For their meal, they went out full Southern style. Susanne had shrimp and grits and Scott had a barbecue sandwich, macaroni and cheese with sweet tea. It was yummy.

After lunch, they all walked along the boardwalk. They stopped at different riverside restaurants and enjoyed drinks along the way. The weather was beautiful and they were trying to find any excuse to be outside. Right around 3:00pm, Susanne freaked out because she thought she forgot to give Paxton his medications. It took a few minutes for her brain to regroup and realize that Paxton wasn't with her. He was at Gigi and Poppy's house and someone else was taking care of all of that. This was the perfect opportunity for Susanne to call home to get an update on the little guy. She ended up doing this at every feeding and even before bedtime. It gave her peace of mind to know that Paxton was doing a-okay. Leah even sent Susanne a picture of Paxton playing with his Lock N Rock Linking Musical Shakers. He was straight jammin'!

Before dinner, they headed to the beach to watch the sunset. This was definitely something that Susanne missed doing. She remembered doing this a lot as a child since she grew up near the water. It was such a fond memory for her. After the sunset, they waited for the moon to rise. It was supposed to be an extreme super moon with it being 30% brighter and 14% bigger. What a sight to see! It was spectacular.

For dinner, they went to a local Mexican restaurant. They all ate their weight in chips. Even though they were stuffed just from that, they managed to finish their entire meal. It was probably the best food they had had in a long time. Basically, it was perfection on a plate.

Once they knew Paxton was safe and sound in his bed, they finished the night out at the restaurant in their hotel. Everyone got something different to drink, which was humorous. Scott was thrilled with his choice. It was the best White Russian he had ever had. It was definitely going down in the books.

Susanne and Scott ended up having a memorable day with good friends. They were missing Paxton terribly, but they were glad that they made it out to help celebrate.

And Then There Was Light....

2011-03-18T10:31:00.003-04:00

This morning, Scott was requested to substitute for two classes at the community college. As he was finishing up with his classes, Susanne met him over there because she had another $10 massage scheduled. What a perk for going through the school. Susanne was running a little bit behind because she forgot that Paxton's car seat was not put together. He had had an explosion in his car seat earlier in the week. Susanne had disassembled the entire thing so she could wash the car seat cover, straps, and buckle. It wasn't the easiest thing to assemble, but she was much faster at it now having done it so many times.

Scott and Paxton laid out in the grass and soaked up some rays while Susanne was enjoying her relaxing hour. She was pretty impressed with herself that she had officially made the transition over from preferring a swedish massage to preferring a deep tissue massage. With the kind of "mom" shoulders she had, she needed all the help she could get. She was recently having a dull, chronic pain especially on her left side. She knew that it was absolutely from lugging around her little noodle everywhere. He was her total body workout everyday. Thanks Paxton for making your mommy buff!

When Susanne was all finished, she wanted to enjoy the beautiful weather with her boys. First, they had lunch together before heading home. They needed to get Paxton off to bed for his nap and set up with his next feeding. He was tuckered out from all of the people watching.

As Paxton slept the afternoon away, Scott and Susanne sat outside on the porch together. It was amazing how just a change in scenary could change one's mood. Being outdoors was very relaxing for them. It reminded them to not only appreciate the small things in life, but most importantly to appreciate the wonder of God's creation. Everything had it's place in the world. There was a reason for each individual piece of the puzzle. Without one, there would be no whole. Everything was thought out with such precision. There was such beauty in the delicate details. It helped to bring it all into perspective. God doesn't make mistakes.

They ended their night with a nice stroll around the block. It was lovely to see the sunsetting at a later hour so they could enjoy their days a little longer. The dogs also enjoyed seeing the world with new eyes again. It was a beautiful thing.

Happy St. Patrick's Day!

2011-03-17T23:43:00.002-04:00

Today, Parker came over to play with Paxton while Aunt Leah and Uncle Wally were at work. Parker was dropped off after his morning at pre-school. Susanne had an afternoon full of exciting things to do. She couldn't wait to get started.

Right away, Parker realized that Paxton wasn't wearing green. She had purposely done this so that Parker could pinch him. Paxton enjoyed the gentle squeeze from his cousin.

One of their first activities together was to color. They had a variety of shamrock pictures to choose from. After they were done coloring, they jazzed it up with a little green glitter to give it some pizazz. This was followed by cutting out their pictures and gluing them onto construction paper. They added their names to their masterpieces and...VOILA, they were finished. They immediately placed the completed artwork on the refrigerator for all to see.

For Parker's mid-morning snack, Susanne prepared a plate of sliced cheddar cheese, crackers, grapes, and strawberries. For his drink, she requested his assistance in making Leprachaun juice. Parker was fascinated that his green drink tasted so much like lemonade. Scott saw the yummy feast before him and couldn't pass it up. Susanne ended up making him a duplicate of what Parker was having.

After a short time, Parker hadn't finished all of his snack. He was all done and ready for the next adventure. Susanne and Scott didn't want it to go to waste so they grazed on it throughout the rest of the afternoon. Parker checked his plate at one point and saw that some of his food was missing. He was quickly informed that there must be a Leprachaun hanging around stealing some of the items when he wasn't looking. He was insistent on finding said Leprachaun. He had Susanne and Scott looking in the kitchen drawers, cabinets, trashcan, oven, under chairs, outside, and even in the garage. Unfortunately, they never found the sneaky little thing.

Once Parker tired from looking for the Leprachaun, they went outside to look for four leaf clovers. Susanne took their guinea pig, Beans, outside with them. The rule was whenever they found a clover that didn't have four leaves, they must give it to Beans to munch on. Scott, Susanne, and Parker left with empty hands, but Beans left with a full belly.

Scott ran around with Parker some, while Susanne enjoyed the warmth from the sun. She wished that Paxton had been awake to enjoy it as well. She knew deep down that his beauty rest was more important than his suntan.

As the afternoon was turning into the evening, they decided to watch a movie. Scott had prepared a special treat for them and they couldn't wait to see what it was. He had made them Leprachaun popcorn balls, which were a green, ooey, gooey, delicious, sweet sensation. They couldn't get enough of it. Susanne, Scott, and Parker were only about a third of the way into the movie when Uncle Wally came by to pick up Parker. He didn't want to leave, which was always a good sign that Susanne and Scott had done a great job of taking care of him. Two points for the Padilla team!

As Wally and Parker left, Leah arrived. She came over for a refresher on Paxton's care because she was going to be watching him this Saturday while Susanne and Scott were in Wilmington. They were heading there for the evening to help celebrate one of Susanne's best friends birthdays. It had been a few months since they last saw each other, so they were excited to be reunited.

Susanne was always nervous with leaving Paxton, even if only for a few hours, so thinking about an entire night away was extra scary. On the flip side, if there was anyone she knew she could trust with Paxton's life, it would definitely be Leah. She was very intelligent and intuitive. She was quick on her feet and made good judgement calls. She was meticulous and careful just like Susanne, which gave that added bonus. There was a lot to be remembered and a lot to do, but hopefully she would catch on quickly.

Leah stuck around for the 6:00pm and 9:00pm bolus feedings. It helped for her to be present for one that was more straightforward and one that was more involved. The 9:00pm feeding was the one that required a bunch of medications. It was nice that Leah was really familiar with syringes and reading prescription labels. She had gained this experience not only through her job, but also through having two young children of her own that were either on something now or had previously been on different things in the past.

Luckily, while Leah was visiting, Paxton was still awake. Leah was excited that she got to spend some quality time with him. She was able to give him the remainder of his birthday gifts that had just arrived in the mail. The Hansen's had purchased Paxton some Lock n' Rock Linking Shakers and "My Very Own Name" book. The book was extra special because it was personalized and went through how a variety of animals came together to form his perfect name. In the long run, it would help Paxton to recognize letters and to learn to spell his name.

The occupational therapist side of Leah decided to be extra useful and show Susanne some different therapy techniques to aid in training Paxton to get to a sitting position from laying down. Susanne welcomed any new ideas for trying to help push Paxton along.

Once Paxton went down for the night, the rest of the household gathered for dinner while watching a TiVoed version of American Idol.

Juggling Act

2011-03-16T23:48:00.002-04:00

Susanne was off to work early in the morning. She was pleased that she got a little more rest than she had over the last few nights. Scott watched Paxton until he had to go teach his class, then it was Poppy's turn to step in.

Poppy sure had his plate full for the day. He wasn't only in charge of taking care of Paxton, but also Parker. Susanne knew that this would be a challenge, but if anyone could do it...it was Poppy. The difficulty was that Parker was very active while Paxton was stationary. Parker liked to get involved in an activity and then within 15 minutes of starting it, he was ready to move on to the next thing. On the other hand, Paxton needed to be held or lying down. He couldn't sit on his own quite yet and he often needed prompting for play. Also, due to his rigorous feeding schedule, he often needed to be near his enteral pump. He was still being fed five times a day, every three hours, over an hour. He was then set up with a continuous feeding for eight hours overnight. There were only two hour windows throughout the day that he wasn't connected to a machine. Within those moments, one was lucky if he was awake at those times. Susanne was sure that one child or the other would have to self entertain for chunks of time. This would have to suffice especially since she knew neither would be neglected.

It ended up working out perfectly. Paxton loved to sit in his bouncer to watch Sesame Street a couple of mornings throughout the week. It had become somewhat of a routine for him. Scott used this to help provide stimulation while he would get ready for work. Poppy decided to continue with this schedule to free himself up for Parker. He alternated turns which worked out until Susanne came home for lunch. She was able to relieve him of his duties for at least a short bit until Scott got home for the rest of the afternoon.

When Susanne got home for lunch, Parker and Poppy were playing pretend. Parker was an employee at a fast food restaurant and he wanted to take everyone's orders. He was very good about getting the food out quickly and making sure you got the correct amount of change. He was so creative.

Susanne got back from work in time to relieve Poppy again so he could go to work. She was excited that she would get to spend the rest of the evening with her sweet baby boy.

Paxton Makes Everything Better

2011-03-15T23:01:00.002-04:00

Susanne and Paxton didn't arrive at the house until 11:30pm last night. It took her over an hour and a half to get settled back in. Luckily, Scott helped out with it all, which made it go a lot quicker. She was pretty much non-functional by this point. Packing, unpacking, packing, unpacking, coming, going, going, coming....it was starting to wear on her.

Paxton woke up in the middle of the night and Susanne decided to wake up Scott to take care of him. She didn't have any energy reserved especially since she only had three hours of sleep the night before. She needed all of the sleep she could get because she had to be at work at 7:45am for a meeting instead of 9:00am. Susanne knew it would be tough, but she was used to sleep deprivation by now. She was technically a pro on functioning on a little sleep.

Scott got up with Paxton first thing and hung out with the little guy. Once it was time for him to get ready for the class he was teaching, he set Paxton up in his carseat to watch Sesame Street. Within minutes of being upright, he pooped everywhere. It looked like a volcano had erupted. Paxton was known to do this in the past. His carseat had always been a place that helped to clean out his bowels. What a messy boy!

After operation clean-up occurred, Paxton was set out to dry. He was free as a bird for a short time. There were definitely no complaints on his end.

Poppy took over Paxton's care once Scott left. He felt like Paxton was laughing a lot more today than in the past. It was neat that he was getting to see Paxton grow.

During lunchtime, Scott and Susanne came home. They had to get right to work with calling insurance companies to figure out what was the best plan for Paxton. Since Scott lost his job, Paxton no longer had primary insurance. This was devastating and not something he could go without. They had been on the hunt to find a replacement from the second they got the bad news. Unfortunately, no option was looking too great. The simple fact that Paxton had chronic medical conditions, including a cardiac defect, put him in the top tier for cost. His monthly premiums alone were averaging around $700 per month. This was way more than what they could afford at this time. They would just have to keep searching and hope for the best. No matter what, a decision would have to be made soon. They just didn't know which way to go.

To take their minds off of the health insurance dilemma, they spent some quality time with Paxton. Scott was fascinated with offering him a small portion of whatever he was eating, especially any kind of candy coated treat. Paxton always seemed hesitant at first, but then he would come around. He would usually smile once he got a full taste of whatever was sitting on his lips. He would even lick his lips at times that supported the idea that he liked the flavor of sweets.

Since they were working so much in and around his mouth, they just happened to notice that his right front tooth was coming in. Even though this was his fifth tooth they had seen, he hadn't really shown many signs of teething which was a relief for all. They guessed when someone had gone through what he had gone through, cutting a tooth didn't seem so bad.

The diaper rash was still an on again, off again battle. No treatment seemed to be working. Susanne was convinced there was more to the story. She decided that she wasn't going to switch Paxton's formula quite yet. She wanted to wait until after she had stopped giving him breastmilk all together to throw that out as a possible cause even though it was unlikely. Susanne still stood firm that the diaper rash started once she DECREASED the amount of breastmilk that he was given. Needless to say, the goal she wanted to reach was to continue pumping until Paxton received his last Synagis vaccine. After that was out of the way, the nutritionist, pediatrician, and lactatation consultant felt like Paxton could be on just formula. It would be interesting to see what the diaper rash would do at that point.

Scott and Susanne were loving the fact that the sun was out longer during the day. Even though Susanne got home after 6:00pm, she still got to enjoy the fresh air. Scott, Susanne, and Paxton decided to walk the dogs to savor every morsel of the beautiful weather. This always helped to clear their minds. Paxton looked so good in his big boy stroller. He didn't depend on the carseat anymore to be wheeled around. He was exhausted by the time they got back. Gigi played with Paxton while Susanne prepared his bed. The second she laid him down, he was out.

They ended the night with yummy burgers and fries while watching "The Bachelor". It was perfect!

Full Plate and Your Late

2011-03-14T16:01:00.002-04:00

Susanne was just about to get in bed for the night when Paxton woke up around 4:00am. Luckily, he settled right down after a diaper change and some soft back rubs. Susanne had to be up soon because she had to get herself and Paxton ready for a full day of appointments. Also, she had to get the car packed for the road trip back to NC today. It was going to be a long one.

Susanne was shocked when she rolled over and saw that the clock read 7:07am. She knew that couldn't be correct. She had set her phone alarm to go off way earlier than that. Unfortunately, it was the real time. Her cell phone never went off. Her phone was doing this weird thing where it would shut off when it was fully charged and then turn on again. It would continue this cycle until she took it off of the charger. The phone must have been in the off mode when the alarm was supposed to wake her up. Now she would have to pray for a small miracle to get out of the house on time.

Somehow she was able to get herself and Paxton ready within twenty minutes. She was out the door in the blink of an eye. As she got into her car, she knew she was about to face another set of challenges. It was the heart of rush hour traffic in Northern Virginia. This was the worst time to be on the road because going somewhere 10 miles away could take up to two hours. She decided to be smarter than the traffic and take a different path than she was used to. She remembered all too well when she used to try to go to work at this time, the back roads were far worse than the main roads. She was cruising along until she approached the stoplight that would get her onto the highway. The line was ridiculously long. She sat there for at least fifteen minutes. It wasn't until she was finally able to turn that she realized there had been an accident on the main road. She knew right then that she had made the wrong choice. If she would have just gone the way she usually went, she would have avoided the extra bump in the road. Either way, she knew she was going to be late.

In knowing this, she called the doctor's office to inform them of her situation. They were very understanding and told her to still come in. She finally arrived and checked Paxton in for his appointment. This took forever because there were a lot of children that were scheduled to be seen. The checking in process sometimes took the longest.

After hanging out in the waiting room for a short bit, they got called back. Paxton got his weight, height, SpO2, and vitals checked. Paxton weighed in at 19lbs 6oz. Susanne was quite pleased. His height was 28.5", which was less than the last time. She was puzzled by this one. She had to blame user error vs. Paxton shrinking in length. His oxygen levels were hanging steady at around 88. This was so much better than prior to his heart surgery. She knew this improvement alone helped him to feel better.

Next they were off to the exam room. It was there that they ended up waiting and waiting and waiting some more. She knew that she was going to have to wait a little longer than usual since she was about thirty minutes late. She did start getting concerned though when she had been in there close to an hour before the doctor came in. She thought for sure that she would be able to make it to a 9:45am appointment for Paxton's cardiology check-up. She would have never thought that his gastroenterology appointment would have lasted longer than 90 minutes. Boy was she wrong! The doctor basically came into the room at the time that Paxton's other appointment was scheduled to start. She had to unwillingly call them to cancel.

The gastroenterologist was lacking in the personality department. Susanne strongly felt like this was an important quality to have as a pediatric doctor. He was also a little snooty for her liking. He spent the entire first ten minutes trying to figure out why Susanne was there in the first place. When she kindly explained the fact that she was referred to him for further instructions on long term G-tube care and for his neverending diaper rash...he seemed baffled. Susanne really got perturbed when she realized that he had not read ANY of the eight page history that was required for parents to fill out before the apointments. He didn't have an understanding of Paxton's medical conditions at all. Susanne had to spend a significant amount of time going through everything that she had already written down. Somewhere in the middle of it all, he got caught up with why Paxton had been seen at multiple different hospitals along the east coast. Susanne explained Paxton's unique circumstances, but that wasn't good enough for him. He continued to inquire. Susanne tried again to explain that Paxton's combination of medical issues was rare. Most medical teams had been comfortable treating their own specialty, but not managing him as a whole. It took months to find someone willing to work with him on feeding. Once that issue was resolved, he required a specific heart surgery that only two surgeons in the entire United States had ever performed. Once that was said, he went into questioning whether or not Susanne had checked into the cardiac surgeons at their hospital. Susanne had to really focus on not giving him a wise answer. Did he not know who he was dealing with? Did he not have the proof in his hands that Susanne had investigated every possible avenue for Paxton?

Finally, he moved on to the exam portion of the appointment. He thought Paxton looked great considering all that he had been through. By the end of the appointment, Susanne had no more information than what she had come there knowing. She received no instructions for G-tube care. She was informed to call a nurse for that. She was told to schedule an appointment with the feeding team for further instructions on managing his feeding issues. She needed to schedule an appointment with a nutritionist to seek information on changes regarding Paxton's nutritional requirements. He requested more testing that had already previously been done, which included bloodwork and a modified barium swallow. Finally, as far as the diaper rash went...he had nothing!!! WHAT? Isn't he the doctor that was supposed to treat everything from the mouth to anus? Wouldn't you think he would have some sort of suggestion? It wasn't until Susanne requested trying a different formula that she got any information on it. Her thought process was that maybe Paxton was sensitive to the current formula because it was a hydrolyzed protein instead of a novel protein. She knew that this could be the case in veterinary medicine for animals that had food allergies so why couldn't it also be true for Paxton. This basically meant that Paxton was eating a formula that had milk and soy protein in it, but they had been broken down into such tiny particles that his immune system wasn't supposed to recognize them as allergens. This was different from a novel protein diet which was a protein that Paxton had never been exposed to before and therefore couldn't have developed an immune response to it. She was glad he finally had something for her to walk out of the door with. This was an easy switch and worth a shot.

She got out of there three hours later. That was way too long of an appoinment to walk out of frustrated and informationless. She knew she would eventually get all of the answers to her questions, but she would just have to talk to five and six different people to get them.

While she was driving out of the parking lot, Paxton's therapist texted Susanne to let her know that she was going to have to cancel Paxton's appointment for today. One of her children had strep throat and she didn't want to put Paxton at risk. She was always glad that she kept Paxton's health in mind.

Since that appoinment was cancelled, she decided to head over to the pharmacy to pick up Paxton's prescriptions that she had called in a couple of days before. She also had a new dose for one of Paxton medications so it was perfect timing. When she arrived, his medications were not ready. They had been having trouble with the insurance situation since it changed again. Susanne knew it was a pain to deal with, but it wasn't her fault that Paxton lost his primary coverage. While she was waiting for the receptionist to get ahold of the insurance company, it was brought to her attention that Paxton's prescription was for a different medication than what he had been on. Susanne was confused because the gastroenterologist didn't mention this to her. He had only said that he was going to increase the current dose of his reflux medicine. Susanne had to spend the next thirty minutes trying to get in touch with the doctor to see if he made a mistake or if he truly wanted to switch the medication. Finally, Susanne got a call back. The doctor claimed he didn't know Paxton was on Protonix even though Susanne had written it down for him and discussed this with him during the appointment. He said that he thought Paxton was on Prevacid. Needless to say, he switched the medication. The carelessness was eminent and Susanne didn't like it one bit.

After waiting for over an hour for Paxton's prescriptions, Susanne and Paxton were finally out of there. It was a good thing that his therapy appointment was cancelled because they wouldn't have made it home in time. Susanne was working against the clock at this point. She needed to get home as quickly as possible because Paxton was off of his feeding schedule. She had only brought enough milk for the first feeding of the day because before she left the house this morning she thought Paxton needed to be back for therapy at 12:00pm. In no way did she think it would have been cancelled or that she would still be gallivanting around. In her race home, she realized that the gas tank was on empty. She was trying to hold out on filling the tank until she could find a Shell gas station in particular. A while back, Scott and Susanne had received a Shell gift card from a friend to try to help with the cost of gas. They knew how much Susanne was traveling back and forth and thought that this would help out. It was a very thoughtful gift that was definitely put to good use. Susanne quickly realized that there wasn't that specific gas station in her vicinity. She got on one of the main highways and hoped for the best. She was no longer seeking out that specific gas station, any one would do. She didn't understand why when you weren't looking for a gas station, they were everywhere, but when you were looking for one, they were nowhere to be found. She was frustrated with herself that she got into the same situation that she had been in months ago. Why had she not learned her lesson? Her tank was on E and the GPS was estimating that she didn't have enough gas to go any further. It read that she had zero miles left before the tank was completely dry. She knew that she still had at least 3 - 4 miles to go before she would come across an exit with any promise. It was by the grace of God that she made it to a gas station. It was $3.74 per gallon, but she didn't care. She only filled the tank with fifteen dollars worth of gas and she would figure the rest out later. She was relieved that this crisis was averted.

They finally arrived home and Paxton was way overtired. He had a busy morning that started out too early. He didn't like to sleep in the car so it always exacerbated the problem. Once he was situated in his crib and set up with his late feeding, Susanne HAD to pump. She didn't have time to do it this morning because her alarm didn't go off and she was running so behind. Afterwards, she felt like she had somewhat caught up with her schedule again. Now she would have to dig deep and keep pushing. She still had a car to pack and a six hour drive ahead of her. She was praying that she would get ahead of rush hour traffic, but it wasn't looking too good. It was going to be a long night.

Neumann's In Da' House

2011-03-13T15:10:00.006-04:00

Paxton slept a good portion of the night. He only woke up once around 4:00am, which technically used to be 3:00am before today. Susanne hated the thought of losing an hour. She was always in need of MORE time, not less. There was a positive side to it though...it would be light out a lot longer. Yay! This always helped to encourage Susanne to get more done with her days. There was something about the sun setting that registered with her brain that it was quitting time for the day.

After Paxton's thirty minute episode of being unsettled, he slept the rest of the night. He woke up uneventfully. This was day 2 of no gagging or vomiting. This was a great kick he was on. Susanne could definitely get used to this.

Aunt Leenie and Uncle Loonie came over for a visit this afternoon. It had been a while since they had last seen him. They were impressed with how well he looked after just having another surgery. They thought it was pretty cool that the hole in his mouth was all sewn up.

Paxton was well overdue for his next bath and Susanne was still testing out the Domeboro packs for his diaper rash. It was nice to have an extra TWO pairs of hands and Paxton sure didn't mind the attention. After Paxton's regular bath, Susanne set up the Domeboro solution in just the very bottom of his bathtub. It was just enough to cover his booty. Susanne had to soak the affected area for about 15 to 20 minutes. Paxton didn't seem to mind the wait. Once he was all done, Aunt Leenie lotioned him up. She gave him an extra little massage to his muscles as an added bonus. Once she was done, Uncle Loonie took over with cuddling duty. Of course, they only talked about the manliest of manly things.

The timing was perfect. Paxton was due for his next feeding. They set him up to play on his play gym while he ate. It wasn't long into his playtime that he was showing signs of being tired. He had only been up for a couple of hours. Susanne thought for sure he had more in him. Even though Aunt Leenie and Uncle Loonie wanted to spend more time with him, they knew he needed his beauty rest. That was how he got to be so good looking.

The rest of their visit, Paxton was out cold. Susanne spent this time catching up with the latest and greatest happenings in the Neumanns' lives. Susanne sure missed hanging out with them like they used to. Of course, right as they were heading out, Paxton woke up. Better luck next time.

After they left, Susanne set up Paxton in his high chair to watch her prepare dinner. He was always so engaged when she was giving him cooking lessons. Hopefully, one day he would have the same passion for food as his mama.

Once he was off to bed again, Susanne took the rest of the night to pack up their belongings for the trip back to NC tomorrow. There were always so many odds and ends she had to remember. She also tried to finish up any business that had to be dealt with while she was up here. It was easiest to take care of most things when she was in VA because that was where all of the needed information and paperwork was filed and stored away. By the time Paxton was due to be set up for his overnight feeding, Susanne couldn't believe where the time had gone. There were never enough hours in the day. It helped that Paxton provided some comic relief earlier in the night as he was falling asleep. She witnessed him laughing at himself through the monitor. She didn't know what was so funny, but it made her smile. Hopefully, she could get this on video one day.

Losing Time

2011-03-12T23:59:00.002-05:00

Today, there was cause for celebration. Paxton didn't wake up gagging or vomiting. He woke up peacefully and quietly. This was such a rare occasion that it deserved acknowledgement. Susanne could definitely get used to this.

Paxton was awake for just a little over an hour before he started showing signs that he was tired again. He played on his play gym and batted at some toys, but he tuckered himself out pretty quickly. He even fell asleep midway through his 9:00am feeding while playing. Susanne put him back in his crib for his first nap of the day. Susanne was caught off guard when he ended up sleeping for four hours. She wondered if he was going through a growth spurt.

Once he woke up in the afternoon, Susanne set him up so she could air him out again. This was becoming part of their daily routine. It was the only thing that consistently helped to improve his diaper rash. Paxton never complained about this because he enjoyed the freedom.

Paxton was visibly well rested. He was very engaged in playtime with his mommy. He was more interactive and playful than he was this morning. Susanne found it so interesting that he had a preference for certain toys. He absolutely loved his Mortimer the Moose. He had been his favorite for a long time. His newest obsession was the sensory balls that he got for his birthday. They were just different sized plastic balls with different textures on the outside. They didn't light up or make noise. They weren't soft and cuddly. They didn't have a lot of flash and sparkle or glitz and glam. They were just balls, but he LOVED them. This, in some weird way, reminded Susanne so much of Maverick. Maverick was known to pick out the most uninteresting, humdrum of toys as his favorites. For example, Susanne remembered buying James and Maverick a plain, plastic square toy from Petsmart because they were on sale for $0.97 a piece. They didn't do anything special, she just thought it would be something different for them because every other toy was a round ball or an elaborate stuffed toy of sorts. Susanne and Scott were amazed at how quickly he got attached to this thing. Up until Maverick's last days, he would carry the blue square toy around with him everywhere he went. He would even sleep on top of it no matter how uncomfortable it may have been. He loved the simplicity of it and he loved that it was different from all of the other toys. It was easy to see that Paxton was definitely his little apprentice in so many ways.

Moppy came over later that afternoon to watch the bug while Susanne ran a few errands and went to dinner with a couple of her good friends. Paxton was fighting his need for another nap when she arrived, but he finally went down. When Moppy went to check on him a few times, he would be half asleep. However, the second he knew she was in the room he would open his big, brown eyes, look up at her, and smile the biggest smile. It was like he knew that he was being stubborn. Moppy had no question as to where he got that trait from. There would be no way for him to escape it since both of his parents were that way at times.

The rest of the evening was uneventful for the most part. Moppy got to play with Paxton and even read him a few bedtime stories. She couldn't believe how much better he looked since the last time she saw him, which wasn't even that long ago. She could see the change that Susanne had noticed over the last week. He was more alert and talkative. He was really getting adjusted to his new mouth. The other thing that she noticed was that he was getting heavier and heavier. It was almost difficult now to pick him up because it was like lifting 19 pounds of dead weight. The one thing that was for sure was that Susanne and Moppy would not be lacking in upper body strength. People would soon start lining up for tickets to the gun show.

Susanne got home later than expected. She got so caught up in conversation with her friends that the time escaped her. Moppy called her around midnight to ask if she should set up Paxton's continuous overnight feeding. When Susanne realized how late it was, she was thrown off guard. It was after she got off the phone that Susanne and her friends realized that they were the only people left in the restaurant other than staff members. The waiters and waitresses had pretty much already cleaned up the place and reset all of the tables for the next day. Their waiter came by dropping a subtle hint that they should wrap things up. The restaurant had technically been closed since 11:30pm, but they were so kind to let the girls stay longer without saying anything. Everyone could probably see that they were having the time of their lives and didn't want to interrupt.

Susanne got home safely. She was excited to peek in on her little man and hopefully find him sleeping. When she got upstairs to see him, he was restless. Moppy had mentioned that he had some difficulties going down. Once Susanne held him to let him know she was home, he went right down. He just wanted to know his mommy was there with him before he ventured off into la-la land.

Susanne knew that the morning would come too quickly...especially since she would be losing an hour of sleep.

DON'T FORGET TO SPRING FORWARD!

Replacing Nurse Betty

2011-03-11T22:01:00.001-05:00

Whoops! Susanne knew that Paxton was overtired from the travels yesterday, but she didn't realize that she was so overtired as well. She accidentally fell asleep and missed Paxton's 9:00pm feeding. It wasn't until around 1:00am that she came to. She knew something was wrong when she looked at the clock. It took her a minute to realize what had happened. She immediately got up, gave him his medications, and started his continuous feeding. Before heading back to bed, she also had to pump. It was going to be a long day.

Paxton had a new nurse coming by the house for Susanne to train and evaluate. She had to print out Paxton's daily schedule and the specific instructions that come along with taking care of him. He was supposed to arrive a little before 9:00am. Susanne started getting worried when he didn't show up by 9:30am. She didn't have his personal phone number to contact him so she decided to go ahead and give Paxton his morning medications and start his first bolus feeding of the day.

The nurse didn't show up until an hour after his scheduled time. He said he got lost in the neighborhood. The first thing they did when he arrived was to swap phone numbers.

Susanne liked the new nurse right away. He had a very soft spoken manner about him and seemed laid back. He took notes and asked a lot of questions when she was going through Paxton's daily routine. He was very comfortable with the Infinity pump, enteral bags, medications, and G-tube care. It helped that one of his other patients that he worked with had a G-tube as well. This would make training that much easier. Susanne would be able to trust him more than someone that had no previous experience with the MIC-KEY button.

Paxton adjusted to the new face quickly. He was so laid back and social that he loved seeing new people. The nurse did a great job of asking questions when unsure about something and he never attempted to do something for Paxton if he was not comfortable with it. Paxton slept most of the time that the nurse was at the house. He probably wouldn't get a good sense of how great Paxton was until he got to spend more quality time with him.

After the nurse left, the occupational therapist came by for an oral therapy session. As always, they started with some facial massage. Once his cheeks and mouth were all warmed up, Susanne started by offering him the oral swab. He was very receptive to it and loved to suckle on it to get little drips of water. He had grown to love the feel of it againgst his gums. It probably provided some relief from teething. After doing that for a while, Susanne offered Paxton spoonfuls of peaches and peas. He did surprisingly well with that today. He still took a long time to gain the confidence to swallow the food that was offered, but he seemed to go through the motions a lot faster. He did not spit up or gag once during the entire session. He also recovered nicely when he was struggling to clear his mouth. He was pretty much all laughs and giggles. It worked well when Susanne would offer him the oral swab between the spoonfuls of the other food. It probably helped to wash it all down.

Susanne had some new goals after todays session. She was supposed to start trying to feed Paxton in his high chair. This would encourage him to be in a more upright position instead of a more reclined position that the bouncer forced him to be in. Also, she could start teaching him sign language that he could use to be able to communicate to her if he would like "more" or if he was "all done".

Paxton went right down after therapy. He had worked hard and deserved a nap. Once he woke up, Susanne ran a few errands. She wanted to go pick up his 1-year-old photos that she had done. She was bummed to find out that the place had closed at 7:00pm especially since she got there just a few minutes after. Paxton was still connected to his feeding when Susanne was wandering around in and out of other stores. She noticed how people couldn't help, but stare. Their natural curiousity kept them from being able to look away. Susanne didn't mind because she knew it looked odd to have a tube connecting form a bookbag on her back to Paxton's stomach. Since his G-tube was covered with clothes she was sure someone probably thought it was a urine bag or colostomy bag. The entire time they were out and about, Paxton was very talkative. It was neat to hear all the new sounds he was making with his mouth.

Paxton was beat when they finally got home. He was more than ready to go down for the night. Susanne also felt exhausted and she could tell she looked it too.

DANGER! Do Not Operate When Tired

2011-03-10T23:13:00.001-05:00

Scott got up with Susanne around 6:30am to help her pack the car so that she and Paxton could get on the road. They had to try to make it back to Virginia in time for a 3:30pm therapy appointment. It helped tremendously that the occupational therapist came to the house for the sessions.

There had been a flood warning posted for today. It was raining heavily the entire six hour drive. Weird as it may sound, Susanne welcomed bad weather. It really helped to keep her focused on the road and to stay awake. Surprisingly, she didn't feel tired on this drive. Six hours was starting not to feel so bad.

Susanne and Paxton arrived home around 2:45pm. Susanne took him straight up to bed so that he could try to get a quick nap in before his therapy session. Paxton got less than thirty minutes of shut eye before Susanne had to wake him up. She knew that it would be hit or miss whether he would be able to function through the appointment. Unfortunately, he was a little cranky and very tired. It wasn't shocking to them. It was actually completely understandable and expected. Paxton pushed through during the beginning of the session. He was sitting up better and he held up his head well. His ability to work through the exhaustion was short lived. It wasn't long before he fell asleep in the middle of an exercise. Poor little Paxton! Night! Night!

Paxton's About to Pop!

2011-03-09T08:14:00.006-05:00

Paxton greeted the early morning with a gagging episode. He only had a mild spitting up incident and then recovered. Once he had settled down a little bit, Susanne could hear the howls and growls of Paxton's stomach. He was notorious for swallowing a lot of air throughout the day and night because he breathed through his mouth. Susanne decided to vent his stomach to see if she could relieve some air that had built up and boy did she ever. She didn't have to do much for the gas to come escaping out of his tube. It was instant relief and easy to tell that Paxton felt much better afterwards.

Susanne noticed that Paxton was cold to the touch. This was a rare occasion in his world. He usually had the opposite problem. She tucked him snuggly back in his bed. She made sure he was nice and bundled up. He fell back asleep in no time.

Today was a purely man day. Susanne and Gigi were off at work while Scott and Poppy hung out with the bug. They spent their morning eating a yummy breakfast, watching some TV, and hanging out on the couch. The three amigos had a day full of fun.

When Susanne came home for lunch Paxton was wide awake. It was so nice to be able to spend time with him and snuggle. It was wonderful to see his smiling face. He was always the highlight of her day.

Today, Paxton officially received the title of "Sir Poops A Lot". He had to be breaking world records. It almost felt like he was playing a sick game with them. The second they would change him and get him all nice and clean, he would produce another dirty diaper. He was like a machine just cranking it out like it was his job. He always seemed to feel his best on the days he had plenty of bowel movements. Today was no exception. He was smiling non-stop. He was really interactive and playful. His favorite part of the day was when he got to air dry. He loved not being confined by that stupid, old diaper. "Free at last! Free At Last! Thank God Almighty, I'm free at last!"

Scott set up Paxton's last bolus feeding for the night before he got too comfortable for the evening. As he was transferring the milk into the enteral bag, he accidentally spilled some on Paxton's face. Paxton just laid there in his crib staring up at his daddy. He didn't seem worse for the wear. Scott was initially worried and wanted to make sure that none of it got into his eyes. Once he realized Paxton was okay, it was all they could do not to laugh loudly. They needed to keep quiet to encourage Paxton to close his eyes. They knew if they got started, Paxton would have to join in the fun.

Once Paxton was good to go. Susanne and Scott planned on watching a movie together. They decided to set up shop on the floor in Paxton's room and watch it on Scott's laptop. They got just about settled when Paxton started stirring. They weren't sure why he couldn't get comfortable. He had taken a couple of good naps earlier in the day. He should have been ready to go down for the night. After assessing the situation, they quickly realized that he was full of air. The second he was picked up, he burped loudly. Scott was able to get a few more good belches out of him and even got some air from the back end when he sneezed. Paxton was smiling once his system was cleared. He had to have felt like a balloon that was about to pop. Luckily, his daddy came to the rescue and saved the day. He went down very easily after he was deflated.

Baby Talk

2011-03-08T20:05:00.005-05:00

Paxton woke up rather smoothly compared to how he usually had. He had a very mild gagging episode, but it was not bad at all. It was a relief to not only Susanne, but to him as well.

While Susanne was at work, Paxton and his daddy watched Seasame Street and Sid The Science Kid while working on therapeutic exercises. Paxton did his best with head control and sitting up while his favorite shows were on.

After Scott and Paxton did some work, he set him up to play with his toys on his play gym. Paxton thought he was just playing, but he was really still working. He was getting so good at reaching and grabbing at the objects that were hanging above and in front of him. At times, it seemed like he was going to pull them right off the loops they were secured to.

Scott allowed Paxton to air dry as much as possible. Both Scott and Susanne were on a serious mission to resolve the diaper rash no matter what it took. It was looking much better than it had in a long time. His cough had also pretty much resolved. The humidifier had worked wonders.

Susanne was bummed that she got home late for lunch. Instead of having a couple of hours with her baby, it was now limited to less than thirty minutes. She basically had to pump and go. While Susanne was multi-tasking, Scott brought Paxton over to her for a quick visit.

Scott had recently purchased a bag of Easter candy Robin Eggs. He decided to offer one to Paxton to see what he would do. It was hilarious. Scott held it right up to Paxton's lips. He was unsure at first, but quickly realized that it was sweet. Almost immediately, they could see his tongue creeping forward for a taste. He was addicted. He didn't even care that the candy coating on the egg was coloring his lips a manly shade of blue! At this point, Scott and Susanne didn't care what Paxton was interested in tasting. They just wanted him to start associating positive experiences with eating. Hopefully, over time Paxton would learn how to eat by mouth. This continued to be a struggle for him on a daily basis.

For some reason, on the days that Susanne had to work it seemed like Paxton didn't like to go down for his naps. He was used to having at least three naps per day. Unfortunately, he was zero for three today. On the flip side, Scott felt like Paxton was more active and more vocal than ever before. He was attempting to make different sounds, moving his tongue around a lot and figuring out different noises that he could make when it was in different positions. Sometimes it even seemed like it startled him when certain sounds came out. He was exploring his mouth and enjoying what he found.

When Susanne got home, Scott had to focus on writing up a syllabus for his first class tomorrow. It would be his first time ever teaching and he was excited. This would be another thing he could add to his repertoire of experience. Losing his previous job wasn't going to get him down.

While Susanne worked on making dinner, Paxton sat in his big boy stroller. He looked so good sitting in a more natural position instead of being more reclined in his car seat. Paxton loved watching his mommy cook. Even though Susanne LOVED to cook, she was definitely ready to sit down after a long day.

Get 'Er Done!

2011-03-07T23:10:00.006-05:00

Today, Scott and Susanne were supposed to watch Cole and Parker. They would also have Paxton to take care of. Talk about diving all in. They were for sure going to get a taste of what parenthood would be like with more than one child.

Susanne got the message bright and early that Parker had acquired a fever overnight. This was so strange especially because he seemed to have felt just fine last night. Susanne and Scott immediately started worrying about Paxton's exposure to whatever Parker currently had. Parker had been up in Paxton's face trying to make him laugh all night. There had to have been definite sharing of some sort of germs. They would just have to wait and see if Paxton was clinical in a few days.

Since they didn't have to babysit the boys any longer, Susanne and Scott would be forced to get things done. Paxton also encouraged them to get things done by sleeping extra long after his morning playtime.

Once he was awake, they all headed out to run some errands. As a treat, they went to Sonic, which was one of the few true drive-in restaurants, for a late lunch. Susanne had seen a commercial for their new selection of specialty hotdogs. She had been so disappointed with her last hotdog experience in Boston that she needed to recover from it by having a do-over. It was an excellent choice. The hotdogs that they selected were all very delicious and well worth it. Susanne and Scott couldn't wait until Paxton could enjoy some of the small joys in life like yummy food.

Susanne was thrilled at how much she was able to get done with Scott's help last week. There seemed to be more and more reasons that him being home most of the time was a positive thing.

Susanne decided to make a fancy dinner for everyone this evening. She made pork chops for the first time, which she stuffed with spinach, sundried tomatoes, and goat cheese for everyone but herself. She made homemade mashed potatoes and baked asparagus. It turned out beautifully. It was the perfect meal to eat during "The Bachelor".

Paxton's New Room

2011-03-06T21:35:00.007-05:00

For some reason, Susanne went to bed close to 4:00am. Right as she was just putting her head down on her pillow, Paxton started to rustle around. He couldn't get comfortable and needed his mommy to make it all better. Susanne pretty much pulled an all-nighter by the time she fell asleep.

Susanne thought that Scott should get up to turn off Paxton's continuous feeding so she could get a little extra sleep. Unfortunately, Susanne ALWAYS had to wake Scott up for him to take care of Paxton if he was still sleeping. He was such a deep sleeper that he wouldn't wake up for anything. Not even for a screaming baby. After taking time to adjust, he would eventually get up to take care of Paxton. He was shocked how quickly the time flew by. Not even an hour later, he had to get up to start Paxton's next feeding for the day. It was hard to motivate him especially the second go round. He was still adjusting to this new way of life. Paxton's schedule was a little off, but hopefully they would be able to catch up by the end of the day.

Susanne and Scott noticed that Paxton's diaper rash was worse. He had little ulcers on his rear end. They had tried different types of Destin, Butt Paste, Baby Powder, A+D ointment, Calmoseptine, Medline Remedy, Domeboro packets, Arbonne's Herbal Diaper Rash Cream, Aquaphor...etc. They had even attempted to air him out a couple times a day. He would lay on layers of towels without his diaper on so that his skin could dry out. This was supposed to help the ulcers heal faster. Unfortunately, they weren't seeing any improvement.

Scott and Susanne spent the rest of the day trying to reorganize and rearrange the room that Paxton was staying in. They needed to try to make more room for all of his things. Even though he was only 13 months old, he had accumulated so much stuff. The sad part was that this wasn't even the half of it because most of it was still up in VA. They weren't sure how it would all fit, but somehow they would make it work.

After a full day of hard work, they all went over to Aunt Leah's house for Mexican Night. Leah had made a delicious spread that included chicken fajitas, spicy black beans, chips, and her homemade salsa. Yum!

Parker had a lot of time to play with Paxton. He made Paxton laugh on multiple occasions. It was so sweet to see them interact. Parker really had such a sweet, gentle demeanor about him.

Date Night

2011-03-05T21:37:00.004-05:00

Paxton was up once at the end of his continuous feeding, but he immediately went back down. After that he slept until after 11:00am, which was weird. He must have needed it.

Today, Susanne and Scott worked on gathering information for their taxes. They had never been as motivated to do this as they were this year. They were in desperate need of money and this would hopefully provide them with some sort of financial help. They had a lot of different items to go through. They had to consider a long list of things that they hadn't had to worry about in the past. It was truly challenging. Paxton being born and the fact that he had multiple medical issues changed everything. Even after a few hours of hardwork and sweat, they decided they would just have to come back to it again on a different day. It would drive them crazy if they didn't walk away.

Later in the afternoon, Scott spent some time training Susanne's parent's dog, Jack. He was well behaved and obedient most of the time. The one thing that they all wished he would do was to come when he was called. Susanne's parents had a huge fenced-in backyard. If Jack were outside and they called him to come in, he would run the other way. He thought that it was all fun and games. He wanted someone to come outside to chase him no matter that time of day it was. After working with him a short time, he seemed to catch on. If Scott could just keep up with the training, Jack would be a new dog in no time.

During Paxton's oral feeding therapy session today, Susanne and Scott decided to introduce Paxton to some new food. The new choices were pureed peaches and pureed peas. They were excited to see his response. Susanne started the session with some facial massage. It was always a good idea to wake up those muscles. Susanne offered him an oral swab first. He was surprisingly interested in it. He was now starting to open his mouth more to receive it and actually suckle around it. He made the cutest sounds when doing this. Once he got comfortable with the oral swab, Susanne offered him fresh banana in his fresh food feeder. This was Scott's first time getting to see him in action. He was so proud of his little nugget. Paxton would mush the banana around between his lips. He didn't seem to mind it when it was offered this way. If he were to get pureed bananas, that would be a different story. After he proved that he was receptive to the things that Susanne had offered him thus far, she tried peas. He did better than expected. He seemed puzzled by the flavor, but didn't gag once. After about five spoonfuls, Susanne moved onto peaches. His face said it all. He scrunched his little nose in response to the tart flavor. It was definitely not as bland as the peas. After his brain wrapped around what was going on, he seemed more interested. Once he had taken about five spoonfuls, Susanne decided to stop. She wanted to end on a good note. She finished the session with offering the oral swab again. He immediately took to it and went to town. Eating and swallowing was still a major challenge for Paxton, but hopefully with time he would get the hang of it. For now, Susanne and Scott would just enjoy the small victories.

Tonight was going to be a special treat for Scott and Susanne. Gigi and Poppy offered to watch Paxton so they could go out on a date. They encouraged Scott and Susanne to try to have some good quality time alone together. Of course, they chose a Mexican restaurant to have dinner. That decision was a no-brainer. After a tasty meal and a few cocktails, they went to the movies. Out of all of the choices out there, "The King's Speech" had caught their attention. Any movie that received the "Best Picture" Oscae had to have some substance. It proved to be an excellent choice even though Susanne couldn't keep her eyes open for a small portion of it. Unfortunately, this was one of her trademarks. She sometimes had difficulty staying awake for movies, especially if it was late at night. Nonetheless, they had a great time together. It had been quite a while since they had gone out on a date. Hopefully, they would start making a habit of this.

Fun Day Friday

2011-03-04T23:32:00.005-05:00

This morning, Paxton woke up right at the end of his continuous feeding. This was becoming a pattern for him. He usually would start by stirring in his crib. It would eventually turn into a whimper, then a cry. It would escalate to gagging followed by spitting up. On certain days, it would take him longer to recover than others. On average, it took a little over thirty minutes to completely settle down. Once he had a chance to regroup, he would be ready to go back down for another nap.

Today, Paxton would not be able to sleep in for long. He was heading out of the house with his mommy and daddy for some errands. Scott had applied for a teaching position at the local community college during the previous semester, but was not contacted for any open positions at that time. Today he had a meeting with the head of the department of Social and Behavioral Sciences who had contacted Scott for an interview to teach a couple of psychology courses during the second 8-week term. It would only a part time gig, but anything would be helpful at this point given Scott's recent unemployment. The best part would be that being a teacher had been one of Scott's lifelong goals. He was hired for the position and could now check another goal off of his list.

When Scott was finished it was time for Susanne to go in for her first massage through the community college. Scott had kindly signed her up for one after he had received one last month. They had a sweet setup where you could receive massages from the students finishing their coursework in massage therapy. It was a tenth of the cost of what a normal massage would be. It was a perfect chance for the students to get more experience and Susanne to get some much needed pampering. It was definitely a win-win situation.

While Scott and Paxton waited for Susanne, they laid in the grass enjoying the breeze. Scott immediately noticed that Paxton was fascinated by the trees. It was very relaxing and helped to keep things in perspective. Unbeknownst to Scott, Paxton was an instant chick magnet. The entire time he was hanging out with the Bug, the female students oohed and awed over how cute they looked together. Scott sure didn't complain about the extra attention.

After they got home, they put Paxton down for a quick nap. They were hoping he would get a little shut-eye before their next outing. The three of them were meeting Aunt Leah, Cousin Parker, and Cousin Cole out for "Free French Fry Friday" at Chick-fil-A. When they arrived, they played in the indoor playground. Parker had a blast sliding down the slide over and over with his Aunt Susie. When they weren't the ones going down the slide, they hid and scared Aunt Leah and Cole as they came out of the covered portion of the slide. Paxton enjoyed watching everyone be silly.

Once they worked up an appetite, they went inside to eat their free french fries. They were delicious.

Later that evening, Susanne and Scott thought that it might be a good idea to work off some of the extra calories that they had ingested at lunch. They took both dogs and Paxton on a long walk. It was so wonderful to get some fresh air.

When they returned Paxton was ready for bed. Scott got him situated for the night while Susanne prepared dinner. Black bean enchiladas with homemade roasted salsa verde. They were finally able to sit down and eat. They caught up on Survivor and snuggled on the couch. What a perfect end to a perfect day!

Waiting Outside The Lines

2011-03-03T18:33:00.001-05:00

Waiting Outside The Lines
by Greyson Chance

You'll never enjoy your life,
Living inside the box
You're so afraid of taking chances,
How you gonna reach the top?

Rules and regulations,
Force you to play it safe
Get rid of all the hesitation,
It's time for you to seize the day

Instead of just sitting around
And looking down on tomorrow
You gotta let your feet off the ground,
The time is now

I'm waiting, waiting, just waiting,
I'm waiting, waiting outside the lines
Waiting outside the lines
Waiting outside the lines

Try to have no regrets
Even if it's just tonight
How you gonnna walk ahead
If you keep living blind

Stuck in the same position,
You deserve so much more
There's a whole world around us,
Just waiting to be explored

Instead of just sitting around
And looking down on tomorrow
You gotta let your feet off the ground,
The time is now, just let it go

The world will force you to smile
I'm here to help you notice the rainbow
Cause I know,
What's in you is out there

I'm waiting, waiting, just waiting,
I'm waiting, waiting outside the lines
Waiting outside the lines
Waiting outside the lines

I'm trying to be patient
The first step is the hardest
I know you can make it,
Go ahead and take it

I'm waiting, waiting, just waiting I'm waiting
I'm waiting, waiting, just waiting
I'm waiting, waiting outside the lines
Waiting outside the lines
Waiting outside the lines

You'll never enjoy your life
Living inside the box
You're so afraid of taking chances,
How you gonna reach the top?

Mr. Mom

2011-03-02T23:13:00.001-05:00

Paxton only woke up once overnight, which was around 3:00am. After that, he slept right up until his 9:00am feeding. He didn't gag much and there was no vomiting.

Scott was in charge of taking care of Paxton again today. They had such a grand time with each other yesterday that they couldn't wait to hang out again. Scott knew exactly what he wanted to do with him. Paxton had a musical activity walker that he got for Christmas that was very interactive and entertaining. Even though he couldn't quite use it as a walker yet, Scott found a way for him to still enjoy it. He set Paxton up on his Boppy pillow facing the huge keyboard. Paxton immediately went to town. He pushed the keys and danced around to the music. His legs and arms were moving. He was smiling and laughing nonstop. For some reason he had a preference for the color yellow. It was probably just that he loved how the word sounded in spanish. For a long time, all that Scott heard was...amarillo, amarillo, amarillo, amarillo.

Paxton also smiled at Scott all morning. Anytime he would smile at him, he would smile back. It was such an awesome moment for them both. It really solidified their bond.

Paxton fell asleep right as Susanne arrived home for lunch. He didn't wake up until the second she walked out the door. Even though she didn't get to hang out with him then, she was hoping she would get to spend some time with him when she got home later. She couldn't wait to see his smiling face.

While Scott was watching Paxton, Poppy was watching Parker. Aunt Leah was at work just like Susanne and needed someone to watch Parker for a little bit. It was a house full of boys. This was something Poppy hadn't had in quite a while with raising four girls. Poppy and Parker had a day full of adventure while Scott and Paxton relaxed. Poppy and Parker built things, walked through the woods, made chocolate pudding, and planted flowers. Scott and Paxton watched Seasame Street, took a nap, and played with a variety of his toys. This was the difference with having a child that was more mobile. Paxton and his daddy sure had a lot to look forward to in the future.

Scott, Susanne, and Paxton decided to go over to Aunt Leah's to watch the second night of American Idol. Leah had brought over a six pack for them to enjoy last night, so they returned the favor by bringing over a plethora of beer to her house. It was nice to get to relax another night together. Anything to keep them upbeat about their situation was helpful.

Leah continued with more craniosacral therapy. Paxton really seemed to respond well to Leah's healing hands. She could feel him release on multiple occasions. It was strange that he was open to her placing both of her hands on his head. He was usually very resistant to anyone touching that region of his body especially with he recent surgery. By the end of her treatments, he was exhausted. It was easy to tell that it was well past his bedtime. Susanne and Scott decided to head home shortly after American Idol was over.

All night Susanne and Scott took note that Paxton had been coughing a lot less. It was hardly noticeable now except when he went down for a nap. It seemed like the humidifier was really helping. This was great news.

Let Me Clear My Throat

2011-03-01T23:30:00.006-05:00

Today was the first day that Scott watched Paxton all by himself while Susanne was at work. He was excited and found out quickly that getting to spend time with the little monkey was one of the perks of not having a job. There truly was something positive in every bad outcome.

Susanne was out the door before 9:00am. She always hated leaving Paxton no matter what the reason. It was shocking to her that it was becoming harder and harder to do this...not easier. Susanne immediately started looking forward to her lunch break because she knew this was the next chance that she would be able to hang out with her little guy. As an added perk, she would be able to hang out with Scott too. So exciting.

At lunch, Scott felt like the day was going well. The boys played with multiple toys including a new monkey he got for his birthday that lit up and played music when squeezed. Scott also worked with Paxton on his stability ball and even did some tummy time. When working with him on his play gym, Paxton seemed most interested in grabbing for a rattle that was hanging from the colorful links. He always seemed to reach for the objects that were black and white, which were high contrast colors. They got his attention everytime. Scott also got to appreciate how much Paxton was loving his new sensory balls. He thought the different textures and sizes were intriguing. It was amazing how something so simple was so interesting.

Paxton was rather active for not feeling well. He had started coughing Saturday night and it had progressively become worse. At first, it was a dry, hacking cough, but now it seemed like it was transitioning over to a more moist, productive cough. Scott and Susanne were hesitant to call it a cold because he didn't have any other symptoms. He didn't have a snotty nose or audible congestion. It definitely wasn't the flu because he wasn't febrile and he didn't seem to feel that under the weather. The only other thought was that it could be throat irritation secondary from the endotracheal tube they used while he was under anesthesia that turned into tracheitis. It didn't seem unrealistic, but the timeline between when he had the actual procedure to when he started having signs was off. Nonetheless, he continued to cough nonstop all day. It was so powerful at times that he sounded like an old man with emphysema. Susanne and Scott could definitely tell that it hurt for him to clear his throat. They finally busted out Paxton's humidifier for the first time. It really seemed to help out a lot. Hopefully, it would speed up recovery time.

Paxton was sleeping when Susanne got home at the end of the day. She took this opportunity to wind down and get ready for the night. Aunt Leah was coming over to watch American Idol and PJ's were a requirement. During the middle of the show, Paxton woke up. He was unsettled. Scott brought him down for some snuggling. Susanne held him closely as they watched each singer. Aunt Leah offered to do some craniosacral therapy on Paxton. Even though Susanne didn't want to give him up, she knew that it would benefit him greatly.

Paxton was loving the attention. He loved it so much that he didn't catch on that it was actually therapy. The longer Leah worked with him, the more she could feel his body release. It seemed to make him relax more. He was interacting with Leah the rest of the time. He was laughing and cooing back and forth with her. What a flirt! She was amused with how vocal he had become since she last saw him. She thought that he looked great for just having surgery. What a rockstar!

Paxton was exhausted before the show ended. Scott took him up to bed for the night before he got overtired. He prepared his medications and his next feeding to keep him on his schedule. They were both hoping that he would be able to sleep through the night. Not just for him, but for themselves too.

"No" Day

2011-02-28T23:36:00.001-05:00

Susanne and Paxton spent all day traveling back to North Carolina yesterday. It was so nice to finally be back in Scott's arms.

Today, was Scott's first day of unemployment. They made the executive decision to have a "no" day and take time to just pout. Having a "no" day meant that they were not allowed to do anything that would require them to think. If the opportunity presented itself to do something like that, they were to just say "no"!

In between taking care of Paxton, they slept. They wanted to rest their minds as much as possible.

The First Time

2011-02-27T18:05:00.002-05:00

The First Time
by The Script

She's all laid up in bed with a broken heart
While I'm drinking Jack all alone in my local bar and we don't know how
How we got into this mad situation, only doing things out of frustration
Trying to make it work, but, man, these times are hard

She needs me now but I can't seem to find the time
I got a new job now on the unemployment line and we don't know how
How we got into this mess, is it God's test?
Someone help us 'cause we're doing our best
Trying to make things work, but, man, these times are hard

But we're gonna start by drinking old cheap bottles of wine
Sit talking up all night, saying things we haven't for a while, a while, yeah
We're smiling but we're close to tears, even after all these years
We just now got the feeling that we're meeting for the first time

She's in line at the door with her head held high
While I just lost my job but didn't lose my pride, and we both know how
How we're going to make it work when it hurts,
when you pick yourself up you get kicked to the dirt
Tryin' to make it work, but, man, these times are hard

But we're gonna start by drinking old cheap bottles of wine
Sit talking up all night, doing things we haven't for a while, a while, yeah
We're smiling but we're close to tears, even after all these years
We just now got the feeling that we're meeting for the first time

Drinking old cheap bottles of wine
Sit talking up all night, saying things we haven't for a while,
We're smiling but we're close to tears, even after all these years
We just now got the feeling that we're meeting for the first time

For the first time
Oh, for the first time
Yeah, for the first time
We just now got the feeling that we're meeting for the first time

Oh, these times are hard, yeah, they're making us crazy
Don't give up on me, baby
Oh, these times are hard, yeah, they're making us crazy
Don't give up on me, baby

Oh, these times are hard, yeah, they're making us crazy
Don't give up on me, baby
Oh, these times are hard, yeah, they're making us crazy
Don't give up on me, baby

Panic Attack...Stay Back!

2011-02-26T23:58:00.002-05:00

Susanne had a bit of a rough night after the news she had received from Scott. Once she got off of the phone with him, she started to feel odd. Her heart started racing and, at times, she would have heart palpitations. Occasionally, she would feel some tightening in her chest with associated discomfort. Her throat became tight and it seemed like it was closing up on her. She was restless, even shaking some, and she felt sick to her stomach. This scared her. She pulled out her stethoscope to listen to her own heartbeat. She was concerned when she heard an abnormal rhythm. She wasn't sure if she was having a heart attack or something else. She immediately called Scott to tell him her concerns and see what he thought. He knew right away what was going on. He informed her that she was having a panic attack. Without a second thought, he contacted Dr. Aunt Leenie, who was a licensed psychologist, to head over to the house and assess the situation. If needed, she was prepared to take Susanne to the hospital. Scott called Susanne back and had her stay on the phone until Aunt Leenie and Uncle Loonie arrived. Once there, they insisted taking over all of Paxton's care. They made sure that Susanne had nothing to worry about, but herself. Aunt Leenie forced Susanne to drink a tall glass of water, focus on breathing, and choose an activity that was relaxing for her. Of course, she picked laying in her bed snuggled up with both kitties watching trash TV. If anything would help her take her mind off of their current situation, this would do the trick.

Over the next few hours, Aunt Leenie checked in on Susanne periodically. Susanne later found out that she had fallen into a deep sleep within an hour after she had gone upstairs. Even when Aunt Leenie and Uncle Loonie decided to leave for the night, Susanne didn't wake up to Aunt Leenie's voice or touch. She called Scott to give him an update before heading out. He was relieved that Susanne was resting deeply.

Susanne woke up the next morning a little confused. Once she came out of her sleepy haze, she was quickly reminded of the previous night's events. She was pleased to find Paxton still sound asleep in his crib. He looked so peaceful.

Susanne had already made plans a while ago to get out of the house today. She had requested to have Moppy stop by later that afternoon to watch the bug so she could run some errands. She was going to try for the third time to make it to the mall to use the gift cards that she had received for Christmas. The timing of this outing was perfect. She couldn't have planned it better herself. She thought that maybe it was God's way of trying to assist her in forgetting her crappy life for another day. Retail therapy was always helpful.

Thankfully, her attempt to go shopping was a success. She didn't get interrupted, there were no emergencies, none of the stores closed on her, but most importantly, she found lots of good stuff. Mission accomplished.

That evening, Susanne's friend, Thorny, stopped by to visit the little guy before they both headed out for a going away party for someone they had worked with for a long time. The restaurant they were going to was really close to Susanne's house, which was always a plus. It helped to ease Susanne's mind about being able to respond quickly if an emergency came up. Thorny was shocked at how big Paxton had gotten since the last time she saw him. She was tickled pink that he was smiling so much too! She was smitten by his charming ways. Moppy eventually had to kick them out of the house. If she hadn't persuaded them to leave, they would have stayed with Paxton all night.

Thorny and Susanne had a great time out. It was always so awesome for Susanne to be able to catch up with all of her close friends. Susanne tried to block out the events that had occurred within the last 24 hours. It was truly too much to think about with everything she already had on her plate. She found that with the assistance of some alcohol, it was a lot easier to accomplish this.

At the end of the night, Thorny and Susanne took a cab back to Susanne's house. They were pleased to find out that Paxton had a great time with Moppy. She did have some trouble getting him to sleep, but this was almost routine for them. Paxton never wanted to sleep when his Moppy was over. He always had too much fun hanging out with her to want to close his eyes.

Let Go

2011-02-25T21:55:00.001-05:00

Paxton had a therapy session scheduled for today. He was going to be working on oral motor skills for the first time since surgery. They decided against offering him any pureed foods to avoid overwhelming him.

Susanne started slowly by working on some intense facial massaging. He didn't appear to be too resistant to the exercises. He even proved that he could still bring his tongue forward when prompted. Susanne showed the therapist how he was interested in the oral swabs that she got from the hospital. She reminded the therapist that Paxton had responded well to them in the past and he responded well to them after this last surgery. Paxton allowed Susanne to place the oral swab into his mouth horizontally. He would open his mouth up to receive the oral swab and place his lips around it. His tongue would move forward to explore the texture of it. He eventually started to suckle around it when he realized that doing so caused it to express small amounts of water. He seemed startled at first, but gradually became accustomed to it. The water appeared to sooth his throat especially since it was so dry from breathing through his mouth and not swallowing much. They decided not to push him too hard today. They wanted to end on a good note so they stopped while they were ahead. Next session, however, they would bring it.

Susanne and Paxton had a pretty low key day. Paxton was still having days where he wanted and needed longer naps. Susanne took this opportunity to try to get adjusted back to real life. She had piles of bills and numerous messages she still needed to sort through.

Susanne was caught off guard by a phone call she received from Scott later that night. He informed her that he was let go from his job at the end of the day. Just when the two of them were beginning to think that things couldn't get worse in their lives, they were proven wrong.

You Got Questions...I Don't Got the Answers

2011-02-24T22:08:00.002-05:00

Paxton had a therapy session late in the morning. This was Paxton's first appointment since having his cleft palate repaired. Susanne requested that they work on motor skills today to give Paxton another 24 hours before working on anything dealing with his mouth. She wanted to give him as much time as possible to increase their chances for success. Paxton did well throughout the session. There wasn't much change regarding his skill level, but that was to be expected at this point. Susanne was given goals to work on over the next week before the therapist left.

After a quick nap, Paxton had to be woken up for his next appointment. He had a follow up visit with the pediatrician as well as his next scheduled Synagis vaccine. The appointment went very well. Dr. Lynn was more than impressed with Paxton's weight gain over the last few weeks. He was finally back on track with his own personal bell curve.

Susanne came prepared today with a list of questions for the doctor. First, she had the pediatrician calculate out his current daily caloric intake. For once, it was exactly where she wanted it to be and it didn't need adjusting. The continuous feeding overnight had allowed for this to occur. Susanne was able to add in what would equal an additional feeding without causing fluid overload to his system. It seemed like his body had a sufficient amount of time to digest the additional calories since it was given over such a slow rate. Since he was on strictly formula overnight, there wasn't the same concern about it being out of the refrigerator for the full eight hours like there was with the breastmilk. Overall, this was a better set up for everyone involved. Paxton was gaining weight, the pediatrician was meeting his nutritional requirements, and Susanne was getting a little extra sleep.

Next, Susanne asked about the two new upper pre-molars (or possibly molars) that had erupted right after Paxton's cleft palate repair. Susanne had pictures of the roof of his mouth prior to the surgery and they were not present at that point. She was curious if any of the instruments used during the operation could have forced the teeth to poke through the gums sooner than they would have otherwise. It appeared that the teeth were coming in at an abnormal location. They were visible right on the inside of the upper gumline. The pediatrician confirmed that they were in an odd place, but she couldn't definitively give the reason why. She thought that it may have to do with him having Pierre Robin, but she couldn't be certain. It was just something that Susanne would have to watch for now. There was nothing that anyone could do at this point. It was a known fact that Paxton would eventually be seen by an orthodontist as part of the craniofacial team he was required to be followed by once he turned 18 months. They would just have to wait it out to see if this would cause any long term problems.

Also, Susanne inquired about the shape of Paxton's head. Instead of his forehead being nicely rounded, it had more of a scalloped appearance. There was a slight indention in the middle of his forehead that seemed odd to Susanne. The pediatrician thought that it could just be a result of the bony plates that make up his skull not yet coming together completely. He still had an abnormally large "soft spot" that supported this theory. She wasn't sure if the shape of his forehead would change once the fontanelle closed, but it was something she also wanted to watch for sure.

Susanne's most important question was about Paxton's never-ending diaper rash. She wanted to know what else it could be since it wasn't clearing up. Susanne was worried about food intolerance or a food allergy. The pediatrician wasn't convinced. Since it improved somewhat in the hospital while Paxton was on antibiotics, the pediatrician thought that it was more likely to be bacterial in nature. They knew it was less likely to be yeast because Susanne had already treated him with a long course of antifungal cream. Before the pediatrician started switching a lot of things in Paxton's world like using different diapers, changing his food, or putting him on antibiotics, she wanted Susanne to let Paxton sit without a diaper on as often as possible for a week or so to dry him out. If this resolved the issue, then they would not have to go to any further extreme. If not, then they would start changing things up. Susanne knew that this would result in long days of endless laundry, but Paxton was well worth it.

All in all, Paxton looked great. Dr. Lynn couldn't be any happier with his progress. She couldn't wait to see him in a month once he was completely healed from surgery. She had high hopes for this kid. She didn't expect any less.

Cinderella Hard at Work

2011-02-23T23:49:00.001-05:00

Today was a messy day. Paxton had multiple episodes of projectile vomiting on and off all day. Everytime she thought he was finished, he would start up again. Susanne had managed to do four loads of laundry and change Paxton's outfit four times all before lunch. He sure kept her busy!

By early afternoon, Susanne elected to give Paxton a bath. His neck had managed to cling onto the awful smell of the recycled formula. It was the gift that kept on giving. It was pretty humorous by the end of it all, but gross nonetheless.

The most difficult part about the morning was that Paxton sounded congested, especially after everything had come back up a few times. His breathing was noisy and at times sounded like he was snorting. Since he had just had his cleft palate repaired, Susanne was not allowed to suction him with the bulb syringe unless it was life or death. She tried other approaches to try to clear his nasal passages and the back of his throat. These methods were definitely safter, but not as effective.

Susanne's good friend, Cory, stopped by later in the day for a visit. She had to work the day of Paxton's birthday party so she wanted to make sure to find a different time to come over to help celebrate. Her timing ended up being perfect. Paxton was awake when she arrived. He smiled a lot and was extremely interactive. Cory was impressed with the positive changes that had occurred since the last time she saw him.

Paxton opened his gift from Cory, which included a fun toy that had lots of bright colors and high contrast patterns. It was the perfect choice to provide visual and auditory stimulation. He also received a book called, "Oh, the Pets You Can Get!". Paxton sat in his high chair playing with his new toy while they ate their dinner. He was very interested in all that it had to offer. It was an instant hit. Susanne and Cory sat and enjoyed watching him.

Shortly after dinner, Paxton was ready for bed. Cory got to observe their usual nightly routine. Once Paxton was out cold, the ladies had the opportunity to catch up. It wasn't until hours later that they realized how quickly time had passed them by. Susanne was excited that Cory was feeling so well, heading into her third and final trimester of pregnancy. It was so funny that just the sight of her made Susanne want to do it all over again.

Wake Up Sleepy Head

2011-02-22T22:44:00.003-05:00

Paxton slept from the time they arrived home yesterday around 1:00pm until 7:00am this morning. Susanne kept going into his room to check on him to make sure he was okay. He would stir occassionally crying and moaning, but he would never open his eyes. Usually it was because he was due for his next dose of pain medication or because he had a wet diaper.

Susanne was curious to see if Paxton's gagging episodes would resolve after his cleft palate repair. She thought that she would be able to determine this best once he was back at home on his normal schedule. Unfortunately, his first morning back began with some difficulty. He spent time trying to figure out what to do with all of his saliva, followed by gagging, and finished off with vomiting a few times. It was comparable to how every other morning started out before the surgery, except that now nothing came out of his nose. Hopefully, his ability to swallow would take a dramatic upswing over the next few months. Susanne knew it would still be an uphill battle, but she was ready for the hike.

Once Paxton recovered from this episode, he was ready to fall back to sleep. Susanne was shocked that he wanted to close his eyes again after he had just been sleeping for 18 hours. Susanne knew he was tired, but not this tired. She followed his cues and tucked him back in. He was out within minutes. It wasn't until 9:00am that he was ready to play. He woke up bright-eyed and bushy-tailed. He looked refreshed and renewed. Susanne was happy to see him acting like his old self again. He was smiling and laughing. He was clapping and kicking. He even managed to coo a little bit.

Susanne played with Paxton on his play gym. This was the first time they had done this for almost two weeks and it felt good. Susanne wasn't sure if she was dreaming, but she was almost positive that Paxton seemed stronger. He was grabbing and holding his toys better than she had ever seen him do in the past. He was so deliberate with his actions. Susanne was so proud of the little guy. It hadn't even been a complete hour before he was rubbing his eyes and yawning again. She had never had surgery, but she imagind that it must take a lot out of a person. Back to bed he went.

Susanne was prepared to slowly work Paxton into his regular schedule. She didn't want to push him too hard too quickly. She was going to take it one day at a time just like she had been doing every day since he was born. That had proven to be the best approach.

Skin of Your Teeth

2011-02-21T23:29:00.002-05:00

Susanne and Moppy didn't get to bed until around 1:30am. They were hoping to be able to sleep at least until 4:30am, but that didn't happen. Paxton woke up just shy of 3:30am. Like clockwork, he would wake up right before his next dose of pain medication was due. He had been doing this everyday since he had his surgery. Susanne knew that the discomfort would lessen over the next few days, but she hated the thought of her baby being in pain at all.

Paxton had become accustomed to his mommy coming to his rescue anytime he cried. She had never let him just "cry it out". She knew if there were tears, then something was truly wrong. He was such a mild mannered, happy-go-lucky baby. Crying was not his go-to emotion. He only ever did it if there was an actual reason. Also, she was hypersensitive about him getting upset because his oxygen saturation level would drop drastically if he did. She knew from past episodes that his oxygen levels could drop into the low sixties. Unfortunately, this still occurred even after his two heart procedures. This was dangerous and it wasn't worth the risk!

Moppy and Susanne had checked out the night before. This was necessary because they had to be at the airport around 6:30am in order to have enough time to check their luggage and get through security. They left later than they would have liked, but still felt that they would make it on time. It didn't help that it had started to snow AGAIN. It seemed like the snow followed Paxton wherever he went. He had experienced more snowstorms in his one year of life than Susanne had her entire life before he was born.

When they finally arrived at the airport, it was packed. The line for checking bags was endless. They stood in line for well over an hour before they got to the front. They knew they were pushing it to make it to the gate on time. Thankfully, it wasn't their first rodeo. They made sure to be extra prepared when they got to the security check. Once they were through the first portion of the security process, Susanne encouraged Moppy to go ahead so she could try to have them hold the plane for them. After every possible liquid was checked, Susanne ran to try and make it. She was more than relieved to find out that the plane was running behind. This gave her a chance to catch her breath and recuperate. She also had time to pull up and administer Paxton's medications. He was also due for his next feeding, but Susanne made the executive decision to skip it to maintain her sanity.

When they were finally called to load the plan, they were shocked that they didn't provide time for parents that had children. This was standard for any airline, but they must have forgotten to call it. This meant that Susanne, Moppy, and Paxton had to fight against the crowd. It was not an easy feat.

Paxton slept most of the flight. He only got upset at the end of it. He was restless and ready to be home already. As they were landing, Paxton thought that it was the appropriate time to have an explosion in his pants. The word explosion was actually an understatement. It had become somewhat of a tradition for Paxton to do this. Susanne couldn't remember any flight where Paxton hadn't left his mark. She had to invariably change his outfit upon arrival to their destination. It constantly shocked her how he continued to one-up himself with the degree of disaster that he'd create. What a messy boy!

They caught a taxi back to Susanne's house, which ended up being about a thirty minute ride. After geting all of their luggage into the house, Susanne immediately put Paxton down for a nap. He had been going strong since early in the morning and she knew he was exhausted. She sure was too! She knew that it would take forever before she could sit down because there was so much to unpack. It was in that moment that she decided to leave it for later and take a nap herself. This was the best decision she could have made. Any sleep was a bonus for her. She would take it any way it came.

Insomnia

2011-02-20T23:51:00.011-05:00

Paxton didn't sleep well at all today. He woke up early in the morning crying and uncomfortable. He was due for his next dose of Tylenol and Oxycodone so Susanne originally thought that this was the problem. She would hold him until he would settle down and close his eyes. The second she would try to lay him back down, he would start crying again. She decided to sit with him while he fell back asleep. She held him for at least an hour and a half. By the time he opened his eyes again, it was time to set him up with his next feeding.

All day, he fought going to bed. He just couldn't get comfortable. He had a very sensitive stomach and ended up vomiting at least five times within the course of the day. It was a new experience for both Susanne and Paxton. They were used to the vomit coming out of both his nose and mouth. Now, the vomit just came straight out of his mouth and she meant literally straight out of his mouth. The amount of force that was behind it, seemed unnatural. It was projectile and there was a lot of it. It almost seemed fake. It reminded Susanne of the pie eating contest scene from "Stand By Me" when Lardass initiated the start of the Barf-o-rama. Yucko! Luckily, Paxton didn't seem to too bothered by the disturbing episodes as much as he used to be. Susanne could only guess that it was because he didn't have the burning sensation from the vomit going up into his nose. There always seemed to be a positive side to every situation...no matter how bad.

Susanne and Moppy were hoping to lounge around all day. They thought that they would have plenty of time to relax, but that was not the case with Paxton being out of sorts like he was. They were kept busy with the multiple loads of laundry that needed to be done. Susanne honestly spent most of her day holding Paxton. Not that she minded holding her sweet boy, but she was concerned that he was so uncomfortable and wasn't getting any sleep. She tried everything from burping him, elevating his pack-n-play more, switching the side he was laying on, and trying to tire him out by playing with him for longer periods of time. Nothing worked! She couldn't even finish getting ready for the day because he required her total and complete attention. There was one point during the day when he was so restless in his bed that she had to go over to check up on him to make sure he was okay. She said in a low voice, "What are you doing?". He immediately turned to her and laughed. He continued to laugh anytime she said anything to him. He was being so silly, but just not able to get settled.

The other time-consuming part of the day was the endless amount of diaper changes that occurred. Paxton probably held a world record today for the highest number of dirty pampers. He had so many that the wipes almost ran out. By the end of the night, they were having to be rationed out.

During the down times, Moppy and Susanne tried to prepare for tomorrow's departure back to Virginia. It was always difficult to pack too early because they usually needed most of the stuff right up until the minute they were walking out of the door. Hopefully, they would get it together. Having an 8:30am flight would sure make this more difficult. Good Luck Ladies!

Hello! Goodbye! Hello! Goodbye!

2011-02-19T23:12:00.009-05:00

Paxton definitely did not sleep through the entire night. The poor guy was up multiple times due to pain. He would start to become restless about an hour before his next dose of pain medication was due. Each time he made even the slightest peep, Susanne was up within seconds to settle him down. Scott, however, slept right through the commotion. He had a gift for sleeping through the loudest of noises. He had not quite figured out how to fine tune his "mom ears". Luckily for Paxton and Susanne, Moppy had experienced "mom ears". She woke up with Paxton's every move as well. This was helpful to Susanne because while she was holding Paxton to comfort him, Moppy could pull up the next dose of medication or retrieve anything else he may need like a receiving blanket, water to flush his tube, or a clean diaper. Susanne had managed for over a year to be able to multi-task and do all of this by herself. Now, she was realizing how awesome it was to have an extra pair of hands.

Once they were up and at em', Moppy spent the rest of the day working on stuff for her job. She worked downstairs in the kitchen so that Scott, Susanne, and Paxton could have some alone time. She felt that it was important for them to have a chance to be a family again. Susanne and Paxton were very sad about Scott leaving today. Even though had a great time together, the thought of him going was always looming over their heads.

Paxton had more energy today than he had over the last few days and he was actually interested in playing for a bit. He was interactive and even laughed for the first time since the surgery. It was the sweetest sound they had heard in a long time. Children were always so amazing. Even through the pain and the suffering, they always managed to muster up a smile or a laugh. This was by far what all parents of ill children depended on to be reassured that things were going to be okay. It was the only thing that provided comfort to them and gave them the strength to continue the fight.

After a full morning of play, Paxton eventually fell asleep on Scott's leg like he had become accustomed to lately. He fit perfectly in the space it created just like a missing puzzle piece. This was Scott's secret weapon if Paxton was ever upset. It was an instant pacifier for him for some reason.

After spending all day together, it was time for Scott to leave. It caused all of the old emotions they were so familiar with to resurface. They hated leaving each other. It was painful to always have to say goodbye just as they were getting used to each other again. They were familiar with the roller coaster ride of emotions, but they were ready for it to end. The empty feeling that arose in the pit of their stomachs was not a pleasant one, but they had to put their game faces on just like always.

It was a sad goodbye. Once Scott was gone, Moppy tried her best to distract Susanne. No matter what she tried, she could still sense her desolation. The only thing that could possibly do the trick was food. If this didn't cheer her up, then there was no hope left. They had been looking forward to ordering specialty hotdogs since the day they arrived in Boston. This was a must have for this evening. Unfortunately, the restaurant that served them was closed. This was the second failed attempt to get these tasty treats. It appeared that it was just not meant to be. Maybe the third time would be the charm.

Instead, they ordered food from Bertucci's again. They were pleased with the spaghetti and meatballs that they had ordered on the last trip up so they thought it would be a good choice. They learned from their previous mistake and decided to split one order of pasta this time. The portions they offered for one person could literally feed an army.

On their way back up to the room, they had to take the elevator because Paxton was in his stroller. They loved any opportunity to go up and down the elevator because of the response they would get from Paxton. He would laugh everytime the elevator would beep to indicate they had moved up a floor. It didn't even matter if he was tired or painful, he still managed to squeak out a little laugh. Priceless!

While they waited for their food to be delivered, they bathed Paxton. He had spit up a few times. He even had an episode of projectile vomiting, which made the cut for longest distance in the Guiness Book of World Records. Susanne thought that a warm bath would not only clean him up, but it had to be soothing. Hopefully, this would help him sleep better.

Paxton was ready for bed right away. He went down with no difficulties. Susanne and Moppy joined forces for his 9:00pm feeding. Now that he was on more medications, it took extra time to get everything set up. Susanne was shocked to see the cocktail of drugs that Paxton was on. He required seven different medications, six of which were due again at that feeding. She was worried that his stomach would already be too full by the time they were finished giving them and there would be no room for food. Poor guy!

After Susanne and Moppy finished taking care of Paxton and finished their dinner, they were both full, tired, and warm. This was the perfect combination to fall asleep. Susanne just had to fight the urge until she was able to set Paxton up with his continuous feeding for the night. She would need to try everything to stay awake for just a little bit longer.

Moebius Schmoebius

2011-02-18T23:58:00.003-05:00

The first thing that Scott and Susanne learned when they got to the hospital this morning was that Paxton was being discharged today. YAY! Both the cardiology team and the craniofacial team thought that Paxton looked fantastic. The doctors had transitioned him over to all of his normal medications this morning and he was tolerating his feedings well.

Paxton had already had a busy morning. The suture that was attached to his tongue was removed and they repeated the bloodwork from yesterday to make sure everything still looked good. Their main interest was the electrolytes, which could be abnormal from the high doses of intravenous diuretic that he had been given. Susanne and Scott hated the thought of him having to get his blood taken again because it was such an ordeal. It was difficult to get a sample due to the awful state of his veins from overuse. Even though it pained them to think about it, they knew the importance of the information and that always outweighed everything. This was in Paxton's best interest even though he didn't view it that way. Luckily, all of his values were within normal limits.

Paxton was ready for a nap shortly after Susanne and Scott had arrived. This seemed to be his pattern this week. While Paxton was sleeping, the nurse spent time preparing Paxton's discharge instructions and gathering the appropriate items he needed to go home. Susanne and Scott had been given some things to do as well before he could go. They had to go to the pharmacy to fill his prescription for pain medication. This was definitely at the top of their list because they didn't want him to be in any discomfort. They also inquired about getting a copy of Paxton's most recent heart ultrasound. Lastly, they went to grab some lunch to bring back to the room because even though Paxton had been cleared to go home, it always took the medical team a few hours to get everything ready for him to leave.

As they were waiting, someone approached them about doing another research study. This time the study was attempting to find a genetic link to congenial heart defects. There were two groups performing similar research that wanted to have access to Paxton's information. The requirements were simple...they just needed blood from all three of them. Since Paxton had already been poked earlier that morning, they decided against getting another sample from him. Instead, they took multiple swabs of Paxton's mouth to evaluate his DNA that way. Susanne and Scott were escorted to a different part of the hospital to get their blood taken. Susanne had no problem doing this anymore. She had to get over this fear during pregnancy when she had to get it taken so many times. Scott, on the other hand, still hated the thought of it. It was the process of the blood actually being drained or pulled from his body that grossed him out. Even though he was apprehensive, he decided that he would do anything for his baby boy.

Later that day, Susanne checked her e-mail account. She was beside herself with what she found. She received a message from the neuro-ophthalmologist who Paxton saw in January. She had been investigating whether or not Paxton could still be considered a candidate for Moebius syndrome. Susanne and Scott were pleased to read this e-mail:

"Hi Mrs. Padilla,

I did hear back from Dr. Engle, one of the nation's experts on Moebius syndrome. She reviewed Paxton's pictures (including the ones that you had sent to me in email), my findings, neurology findings, and MRI findings.

Dr. Engle agreed with the conclusion that Paxton does not have the features of Moebius syndrome and would not pursue any further work up towards this diagnosis. For this reason, she would not recommend a more detailed MRI to be done to look for MRI related changes that can be seen in Moebius syndrome. Thanks for your patience. I hope that this is helpful to you.

Sincerely,

Gena Heidary, M.D., Ph.D."

Moebius syndrome had been one of the potential clinical diagnoses that Paxton received from the genetics team at Cincinnati Children's Hospital Medical Center back in May of 2010. They mentioned that if Paxton didn't end up having this syndrome, then he would likely be displaying features of a syndrome that had not yet been discovered. In turn, they would just have to name it Paxton's syndrome for the time being. So it looked like Paxton had "Paxton's Syndrome". Paxton really knew how to get himself noticed.

Just before they were about to walk out of the hospital, Paxton had an episode of respiratory distress. His tongue seemed to continually get stuck on the roof of his mouth, which made it challenging for him to breathe. It almost sounded like he couldn't get enough air when he would breathe in. His breathing was very noisy. He was crying and sweating. He turned blue and couldn't catch his breath. Susanne got nervous and paged the nurse. After the nurse evaluated Paxton, she contacted the doctor on call to assess the situation. The doctor felt that he looked okay. She was certain that these episodes would lessen over the next few days as Paxton adjusted to the new structure of his mouth. Even though it was scary to watch, Paxton recovered well on his own.

Finally, it was time for Paxton to be discharged. They were instructed that Paxton would need to be seen within four to six weeks for follow up from his cleft palate repair. If all looked well, then Paxton would need to come back again at 18 months to be seen in the craniofacial clinic. Paxton would be followed by this team for the rest of his life. Depending on his age and his progress, this would change how often he was seen and by whom after the initial appointment. The cardiology department wanted to see Paxton back in eight to ten weeks. This would put him six months out from his last major reconstructive heart surgery. Paxton would be sedated at that time to get a second MRI of his heart. This would give the doctors more specific information on the state of Paxton's condition. While he was under sedation, they would also perform another echocardiogram. Hopefully, his heart will have had time to grow more. Susanne and Scott thought that it would be ideal to just combine the appointments. It looked like they would be heading back up to Boston at the end of April.

After they got appropriate instruction for Paxton's post-op care, they broke free. It was nice to have Paxton back under their care. They knew he would be exhausted from his stay in the hospital. They were hoping that he would just sleep right through the night.

Once Paxton was settled in, Susanne and Scott went out to have one last date night before Scott had to leave to go home tomorrow. They decided to be a little more low key this evening and go to the food court that was on the way to the hospital. They had a lot of different food options and it was much cheaper. It was so nice that Scott was able to be there from start to finish this time. Usually, he was only able to be present for Paxton's actual surgery day and a few days afterwards. This time, he was able to be there before Paxton was admitted, for the surgical procedure, the hospitalization, and discharge. This was not only great for Paxton, but Susanne as well.

Nothing Will Stand In My Way

2011-02-17T23:59:00.002-05:00

When Scott and Susanne arrived at the hospital this morning, Paxton was awake staring at his "Happy Valentine's Day" balloon. Paxton was enamored with its movement and shine.

Compared to yesterday, Paxton looked so much better. He seemed more comfortable and the generalized swelling had markedly improved. He actually looked like himself again. This gave Susanne and Scott a great sense of relief. Susanne's persistence for a cardiology consult and intravenous diuretics yesterday sure paid off.

Within moments of them being at the hospital, Paxton fell back asleep. It seemed like he had almost waited for them to arrive before closing his eyes. He wanted to make sure that they knew he was okay. Scott and Susanne watched Paxton sleep for hours. They couldn't believe that he was out for so long. It was important that he rest as much as possible especially since he had be up on and off over the last two nights battling pain from his recent procedure. It was nice to know that he was almost out of the 72 hour window of maximum discomfort.

When the nurse came by to give them an update, she informed them that Paxton had developed stridorous breathing overnight. It became so much of a concern that they had to intervene. The doctors were worried that his airway was becoming almost completely obstructed from all of the swelling that had occurred secondary to the surgery. They had to give him Dexamethasone, which is a steroid that aids in decreasing inflammation. They also had to provide him with supplemental oxygen so that his oxygen saturation levels would remain stable for him. Lastly, they tried positioning his head at a certain angle to optimize his ability to breathe. Since their medical intervention, Paxton seemed much more relaxed. The nurse did mention that Paxton had started his morning with an episode of gagging and ended up vomiting twice. Susanne wasn't shocked by this at all because this had been his morning ritual for as long as she could remember. Also, he had a huge bowel movement that migrated up his back and soiled his bed. The nurse had to give him a mini-bath. This was also not surprising because this was a definite Paxton trademark. Why else would he have been given the nickname "Poo Panny"?

The craniofacial team stopped by after lunch and informed them that they thought Paxton was looking good overall. The doctors wanted to postpone removing the suture that was connected to his tongue because of the concerning respiratory episode that occurred within the last twelve hours. They wanted to make sure to have a way to pull his tongue out of the way if he got into a critical situation. Also, they wanted to give the medication sufficient time to take effect.

Later in the day, Scott and Susanne got to hold the little guy. They took turns rocking him and comforting him. He was yawning quite a bit and even sneezed a few times, which appeared to be uncomfortable for him. Even through the pain, he managed to give them a smile for the first time since the surgery. This warmed their hearts and made everything all better.

Paxton was finally officially transferred over to the cardiology service, which is where he should have been the entire time. It was so important that Paxton's primary care be supervised by them instead of the craniofacial team because they didn't know the intricacy of Paxton's cardiac condition and how to manage it. They could only evaluate his progress as far as the cleft palate repair went. They wouldn't be able to adjust any of his cardiac medications or change the overall plan without talking to the cardiologist first anyway. It just made more sense this way.

Dr. Marx, Paxton's primary cardiologist at Children's Hospital Boston, stopped by again today to check in on him. He also wanted to make sure to talk with Susanne personally since he had missed her the day before. He spent a good bit of time going back over the most recent findings from Paxton's sedated heart ultrasound. He was more than impressed. He was actually surprised at the differences he was able to see with the sedated echocardiogram vs. the unsedated echocardiogram. Before, he didn't think that Paxton's right vetricle was growing or functioning at all. He had mentioned that Paxton would probably need his next heart surgery within the next year. Paxton would get the heart procedure that would be one step away from needing a complete heart transplant. This was scary news. Now, he thought that the right ventricle was growing. He witnessed it working well enough to pump some blood up through the pulmonary artery out to the lungs. This was confirmed with Paxton's oxygen saturation levels. His oxygen levels had been running above 85. This alone supported the idea that more than just the Glenn shunt was supplying blood to the lungs. This was fabulous news, especially to come from the horse's mouth. He mentioned that the goal for Paxton at this point was to switch back over to getting all of his medications through his G-tube instead of through his intravenous catheter. If he remained stable on that for over 24 hours and continued to tolerate his feedings well, then he could be discharged from the hospital. They were hoping that this would occur before Scott had to leave on Saturday.

Susanne and Scott thought that this great news was worth celebrating. They decided to have a do-over second attempt at Valentine's Day. They walked a few blocks to a different Mexican restaurant. They decided to switch up their cocktails this time. Instead of their usual margaritas, Susanne got a Corona and Scott got the house Sangria. They decided to be adventurous and try the cactus appetizer. It was better than they had anticipated, but it did have a weird aftertaste. Their meals were delicious. They had a wonderful time rejoicing in Paxton's overcoming another obstacle in his life. They were constantly inspired by his will to live and his refusal to stop fighting no matter what it took. His perseverance was remarkable.

Pain, Pain Go Away...

2011-02-16T23:22:00.009-05:00

Susanne, Scott, and Moppy tried to get as much sleep as possible last night. They wanted to try to rest up for a long day at the hospital. All of them had been so anxious and worried about the surgery yesterday that they had not rested easily the few nights before.

Paxton looked agitated today when they arrived. He was kicking and thrashing around out of frustration. He had no understanding of what was going on, he just knew he didn't like it at all.

Paxton had done so well overnight, that he was approved to be transferred to the step-down unit on the same floor. The doctor that evaluated him this morning thought that he was right on track. Susanne and Scott thought that although that may be true, he surely looked swollen. Some of the swelling was expected after any surgery, but it just seemed to be excessive. The previously loose identity band on his leg was now cutting off his circulation. His face kept getting puffier and puffier by the hour like a tick. His soft spot on the top of his head was as firm as a rock. Susanne knew these symptoms all too well. This was exactly what put Paxton in the emergency room in November. He had to be experiencing fluid overload.

Susanne inquired about his medications. She was primarily interested in when he would be started back on his diuretic. It was in this moment that she realized that they had made a mistake and had him down to receive his Lasix only twice daily. He was supposed to have it every eight hours instead of every 12 hours. In his world, this was a big deal. Susanne reminded the nurse of his accurate medication regimen. Also, she requested to speak with a cardiologist to discuss his current status. After their assessment, they decided to switch him to intravenous Lasix instead of giving it through his G-tube. The good news was that Paxton's lungs sounded clear and his heart sounded good. Sometimes when the heart was overloaded with fluid, it could exacerbate the murmur. The nurse gave Paxton a dose of the diuretic immediately. They all were relieved that they didn't wait to start the medication until that evening like they had previously planned. Susanne and Scott were hoping that once the medications had time to take effect, it would alleviate the pressure that had built up in his head. This would hopefully help decrease the pain associated with that.

Scott was able to hold the little guy in attempt to help to settle him down. He still couldn't seem to get comfortable. Susanne held him a little while later and had the same issue. Luckily, she found a position that he thought was comfortable. He ended up sleeping in her arms for a couple of hours. She couldn't take her eyes off of him. This was the best feeling in the world.

Scott got Paxton transferred back into his bed when they were ready to go get some lunch. He changed his diaper and snuggled him in. This was the most comfortable Paxton had looked all day. He slept so soundly for hours. His daddy did such a great job.

The second they returned from getting their lunch. One of the doctors from the craniofacial team stopped by to give them an update. If they had decided to actually eat their lunch in the cafeteria, they would have missed her for sure. It was funny how it never failed that the moment Susanne started pumping or they left the room for anything, someone of importance would show up. Overall, the doctors thought that Paxton looked stable. She educated them on the timeline for his full recovery. Susanne was given specific details about what therapy skills were acceptable and not acceptable to work on with Paxton over the next six weeks. She would not be able to work with the pacifiers at all, but she could still offer him pureed foods on a rubber tipped spoon as long as he didn't chew on the spoon itself. The facial massage would still be acceptable, but she would have to minimize the exercises she did inside his mouth. The doctor was hopeful that the suture attached to his tongue would come out tomorrow. Once his generalized swelling was controlled, they would start talking about sending him home. This was music to their ears.

When Paxton woke up, he seemed uncomfortable again. His nurse had done a great job of keeping up with his pain medications, but he still seemed restless. Susanne and Scott requested some oral swabs to see if wetting his mouth a little bit would help. Paxton was unsure about it at first, but then accepted it willingly. He felt much better after all of the bloody build up was removed. It was easy to tell that it soothed the back of his mouth. The short drips of water he was able to get out by mouthing the oral swab helped to lubricate his throat. They were so proud of him for pushing through the pain.

Paxton had much better mobility of his mouth afterwards. He was actually able to put his lips together and occasionally opened his mouth up to yawn. They were able to get a good look at the surgery site. There was definitely not an opening to his nasal passages anymore. It looked well sutured. He still had the stay suture intact for the doctor or nurse to be able to pull his tongue forward if it retracted too far backwards. They had not had to use it yet, despite his tongue being far back in his mouth. As a result of this, he sounded like Darth Vadar. He had difficulty breathing at times, but he would eventually self-correct the problem every time.

While Susanne was pumping, Paxton's primary cardiologist stopped by to discuss the results of the sedated echo from yesterday. She could have called that one. They had to repeat the echocardiogram from January because they had difficulty assessing the right ventricle and pulmonary artery with him awake. Now, they had a much better idea of what was going on. Scott and Moppy were ecstatic to hear that the right ventricle had mildly improved in size and function. There was actually also some blood that was being pumped up through the pulmonary artery to the lungs. This was a remarkable finding. Hopefully with time, this would continue to improve. There was some regurgitation of his tricuspid valve, but that was to be expected. This was more positive than they had expected. This was a nice change for them.

The rest of the evening was spent taking turns holding Paxton, sitting with him while he was entertained by Baby Einstein DVDs, and watching over him as he slept. Once they got him settled in for the night, they left to head back to the house. Tomorrow seemed promising for continued improvement. They were so pleased that he was starting to become more alert. They wanted their old Paxton back ASAP.

Hooray for Surgery Day...NOT!

2011-02-15T23:20:00.007-05:00

Susanne called the surgery department the night before to get the official time of Paxton's surgery. He was scheduled to go under the knife around 11:00am. He was required to arrive an hour and a half before the procedure for Susanne and Scott to complete the necessary paperwork. It was a nice change not to have to get up super early to be at the hospital by 5:00am for his surgery like they had in the past. They weren't sure if it was the type of surgery or his age that changed when it was scheduled, but it really didn't matter to them. The extra sleep would be welcomed either way.

After filling out the initial paperwork, they had to meet with a nurse to double check Paxton's history, discuss his feeding schedule and medication schedule over the last 24 hours, and document his vital signs. Along with that, Paxton always got an ECG, blood pressure, and oxygen saturation level as part of his basic status check. The nurse originally had some difficulties with getting his oxygen level to reach 100%. It was only after Susanne and Scott mentioned that his level was currently in the high eighties or low nineties that she felt relief. After they finished everything they needed to do, Paxton got clearance for surgery that day.

Unfortunately, they had to hurry up and wait. After the initial assessment, they were sent back to the waiting room. They were informed that the surgeon was running behind by about an hour. It was suggested that they grab a bite to eat since it would be a long day. They were given a "lob-stah" pager so they would know when to return to the front desk in the admitting office.

They barely finished their lunch when they were summoned. The pager went off three times and Susanne got called once. There wasn't much time given for them to get upstairs. Once there, they were immediately taken up to the surgery prep area. This was where Moppy had to split ways. She was escorted to the waiting area while Susanne and Scott got to stay with Paxton right up until the minute he was taken into the OR. It appeared that Paxton was in good spirits. He was laughing and smiling quite a bit for what was about to happen. The fact that Paxton wasn't aware of what was going on and he wouldn't remember any part of the entire process was what kept their heads held high. The nurse switched him into his Johnnie before he was taken back. Susanne and Scott kissed Paxton goodbye. Susanne got teary eyed for the first time this morning as the nurse walked away with him in her arms. Letting him go was the hardest part of the whole process.

Waiting, waiting, and more waiting. They set up shop in the same area that they were in for Paxton's last surgery. Just like last time, they continued to be faked out by the nurses and doctors that would walk by. They thought that anyone that even looked their way had to be coming to give them an update. This was extremely nerve-racking. It was about four hours later before they were told he was waking up from anesthesia. This entire process took much longer than they had expected. They were transferred to the cardiac ICU waiting room while he finished waking up and got settled into his hospital bed. After an hour of more waiting, Susanne couldn't take it any longer. She had to see her little monkey. She was so anxious and nervous and restless....she couldn't stand it anymore. She thought she would explode if she didn't see Paxton in the flesh pronto. She just wanted to know for sure he was alright. She wanted to talk to him, touch him, kiss him, hold his hand, smell him, and comfort him. She wasn't asking much.

Finally, they allowed Scott and Susanne to go back. Paxton looked rough, but was at least sleeping when they walked into his room. He was doped up on some good drugs, which helped. They hadn't even been there for more than five minutes before he had a meltdown. He was dysphoric and unhappy. The nurse had swaddled him nicely in a big blanket, but this was a recipe for disaster for Paxton. He got overheated very quickly. Susanne unwrapped him while Scott fanned him. Susanne talked to him softly and tried to calm him down. It was difficult for her because she wasn't allowed to hold him. She had to comfort him from afar. His oxygen levels were dropping rapidly. The nurse had Susanne hold an oxygen mask close to his face. Paxton eventually recovered and fell back asleep. Scott snuggled him in and Susanne rubbed his head so he would know she was there.

While he was in la la land, they decorated his bed with all of his lucky charms. The most important one was his "Lucky Bear", which had been with Paxton since the very beginning. He also had some new faces. Jill had given Paxton a monkey for his birthday. Before they left for Boston, Paxton requested that he be able to take it with him on the trip. It was a perfect fit because he always got a stuffed monkey anytime he was admitted into the hospital. Susanne and Moppy also got him one. They had been eyeballing the Curious George Doctor from the gift shop since January. They couldn't pass it up and got it for him for today's surgery. It was amazing the following he attracted. He had a lot of support wherever he went. This had to aid in the recovery process...right?

Love Is In the Air

2011-02-14T23:52:00.012-05:00

Today was Valentine's Day. Unfortunately, this morning was no different from any other morning. Paxton was up on and off between 7:30am to 9:00am with his usual gagging fit. Most recently, he would wake up crying, but not open his eyes. It seemed like he was still be in a light state of sleep. Susanne found that if she could actually wake him up and get him to open his eyes, then he recovered faster.

To celebrate the special day, Scott and Susanne went to get massages. Since it was a last minute decision, the spa didn't have a slot for them to get a couple's massage. Instead, they had one back to back. It wasn't ideal, but it would get the job done. Susanne went first because she was the lady. Scott took this opportunity to take a cat nap. As Susanne suspected, the massage therapist commented on her "mom shoulders". He said she had a bad case of it. If he only knew...Susanne had to carry around at least 18lbs of cuteness everyday. Scott went next. He had been wanting a massage for months now. He had chronic back pain, which was alleviated somewhat after deep tissue therapy.

Susanne tried to take a cat nap like Scott had done, but her cell phone wouldn't leave her alone. She received a call from Paxton's medical supply company. They called every month to double check which items needed to be included in their shipment. Even though the majority of the time nothing would change, she appreciated them being so involved. The problem that she was having was that the last few shipments either contained the wrong items or they were missing some items all together. She had not changed the order since September when Paxton had his G-tube placed so she was confused who was switcing it up on her. She would go through the list of medical supplies every month and would double check the order, but somewhere there was some sort of miscommunication. She was getting frustrated with the gentleman that she was speaking with. First, she had difficulty understanding him. Second, he wasn't listening to a word she was saying. He just kept repeating himself instead of addressing her concerns. During their conversation, someone beeped in. She answered the call and it was another person from the medical supply company calling to double check which items she needed for the next shipment. This sent her through the roof. It just seemed like they were so disorganized. They sure messed up a lot for a company that was relied upon to deliver the appropriate critical medical supplies to patients. After she hung up with the second guy, she requested to speak with a manager. It took multiple failed attempts to get anywhere before she hung up on the guy. She knew that someone would have to call her back. When a manager finally called her back, she was informed that her account would be marked from now on to never receive a call from INDIA again. Seriously! It was pretty scary that the people who were making the majority of these phone calls had no idea what products they were talking about.

After the massages were finished, they walked around downtown Brookline. It was fun for them to take a nice leisurely stroll together hand in hand. They stopped by a local deli and split a sandwich as an afternoon snack. This was one of Susanne's favorite types of food. True delis were hard to come by where they lived. She always seized the chance to grab a bite to eat at one if the opportunity presented itself.

Paxton was up when they returned from their morning out. It was nice for them to get a chance to hang out with the little monkey before they headed back out for their special evening together. Paxton loved all of the attention and laughed a lot. Scott and Susanne sat with Moppy while she ate dinner. They didn't want to isolate her completely on Valentine's Day.

Shortly thereafter, Susanne and Scott hopped on the T and headed to a popular Mexican Restaurant in the area. Susanne's experience on the subway this time was much more positive. It literally took them less than fifteen minutes from start to finish to get to their destination. They started off their romantic dinner with some homemade guacomole and margaritas. Susanne chose a yummy mango margarita while Scott chose their house margarita. Both were quite delicious. As the evening progressed, the conversation got deeper and more serious than they had hoped. Their stresses and concerns about the upcoming surgery got a hold of them. It spiraled into a discussion about their currrent situation, which was less than ideal. Even though they saw each other more often, they still weren't together as much as they thought they would have been at this point. The distance was killing them. They both lost their appetite rather quickly. They just wanted to get back and be with Paxton before the big day.

On their way back, they ended up accidentally getting off at the wrong stop. It was very similar to what happened to Moppy and Susanne a couple of days prior. Luckily, with the assistance of Scott's phone, they got back to the house safe and sound.

Scott and Susanne wanted to regroup before heading upstairs. They slipped into a dark room on the main floor. They sat in silence and just held each other tightly. It was their only way to escape the real world for a short moment. They didn't want to let go of their embrace. They didn't want to move at all. They just wanted time to standstill. They wanted to remain in the still of the night forever.

Daddy Arrives In Boston

2011-02-13T22:42:00.005-05:00

Paxton woke up before his continuous feeding was finished. He was gagging and seemed uncomfortable. It appeared that he was dealing with thicker secretions again. Susanne felt that he was a little stuffed up as well. Susanne had to suction him multiple times and rock him back and forth. After about an hour, she finally got him to fall back asleep.

Susannne laid back down until his next feeding. Interrupted sleep was not ideal, but it had become her lifestyle for so long that she didn't know any different.

Moppy had agreed to watch Paxton so that Susanne could surprise Scott at the airport. She got ready and was out the door with plenty of time to get there. She didn't want to risk showing up too late because timing was everything. Scott texted Susanne when he landed to let her know that he got there safely. This gave Susanne appropriate heads up for her perfect execution. She was hiding behind the carousel when she spotted him in the distance. Her excitement took over. She couldn't wait to see the expression on his face when he realized that she was there. He went around one side of the carousel and she went around the other. She had managed to stay out of his line of vision. He sat down to wait for his suitcase to circle around the conveyor belt. She walked up unnoticed and sat down beside him. He casually looked up and did a double take. He knew she looked familiar. It finally registered that it was Susanne. He was so thrilled to see her. Susanne took Scott to the restaurant in the airport that she had eaten at almost everytime she arrived in Boston. They had a wonderful lunch together and spent the time talking. It was nice for them to be able to forget the world for a moment and focus on each other.

Scott was so eager to see Paxton that as soon as they were finished eating they headed over to the Yawkey House. He was sleeping when they arrived. He looked so sweet and angelic. Not too long after they had been there, he started to stir. Susanne and Scott were curious to see what Paxton would do when he saw his daddy's face. He was just waking up when his eyes locked onto Scott's. It was a priceless moment to watch him light up at his daddy's presence. Scott got to play with Paxton for a while. Paxton loved his daddy time.

Tonight they went down to participate in the monthly trivia night to try to keep their mind off of the upcoming surgery. It was a nice way for them to meet the other families that were staying at the house. The gentleman that led the group reminded them of the remarkable generosity that existed in this world. He spent well over an hour making sure that everyone went home with something. He made sure to find out where people were from and gear his questions towards things that they could relate to. For example, the couple from Iceland could participate because he asked them specific things about the region they were from. It was a perfect way to break up the redundancy of their schedule. The most touching part of the evening was watching one of the children that had a terminal illness choose prizes for her three siblings and her father that could not be there with her. She even chose a prize for a little newborn baby that was a spectator. Susanne decided to use her own last win to have the young girl make sure to pick out something for herself. She was very excited to pick out a new pair of flip flops. She hoped she could feel the effects of paying it forward.

After trivia, they all moved into the kitchen to enjoy a home cooked meal made by one of the employee's mothers. She had prepared barbecued chicken, broccoli, homemade maccaroni and cheese, and homemade chocolate cake. Susanne was weak and took a spoonful of the maccaroni and cheese. It looked too good to pass up. Once their bellies were full, they called it a night. They all retired to their room and most would probably finish the night out by watching the grammies.

Susanne went back downstairs to make more formula. She walked into one of the families discussing their situation with another family. Susanne was sad to hear that they had a child that had already had five operations and was currently waiting for a heart to become available for a transplant. The child was only three years old and had been in the hospital for two months. He had been on the transplant list for over four months now. She was praying that it would all work out for them, but she knew that it meant that someone else would have to lose a child. This mother brought out a scrapbook that was in the main room of the house. It featured pictures of all of the children that had stayed at the house. She encouraged Susanne to make one for Paxton. As she was flipping through the album, she came across pictures of Sam Oliver. This was the child that had passed away when they were in Boston the last time for Paxton's major heart surgery. Susanne was brought to tears the moment she saw his precious face. It was another trigger for her that she wasn't aware of until that moment. It just made her so deeply sad for Sam's family. She couldn't bear thinking about the fact that they had lost a child. He would have turned a year old at the end of this month. She knew that it would be a difficult time for the family and she was only hoping that they knew they were loved. She made sure to say a prayer for Sam and his family. She was reminded of the reality of the unfortunate circumstances that each family was facing that was staying in this house.

"The T", Stinky, and Me

2011-02-12T23:04:00.002-05:00

Paxton's feeding went off around 7:30am. After Susanne had disconnected him, she was hoping to fall back asleep until around 9:00am when he was due for his next feeding. Paxton had other plans. He had managed to poop everywhere. Susanne changed him on the bed so she could air him out a little bit. Even though she thought she had him well covered, he managed to, once again, pull one over on her. He peed everywhere. It seemed inevitable that they would have to do laundry everyday.

Moppy and Susanne were glad that they had picked up a few items from CVS yesterday. It helped to have some food on hand to eat for breakfast without having to leave their room. They had so many other things that they needed to focus on...like cleaning up after the messy monster named Paxton.

While Susanne got ready for the day, Moppy played with Paxton. She worked on range of motion of all of his extremities. She focused on trying to get him to sit with minimal support to try to help strengthen his core. He tracked his toys from left to right and up and down. He even practiced grasping those same toys and holding on to them with all his might. Lastly, Moppy made sure to work on making him smile and laugh. She achieved both by pushing his tickle button. He fell for it everytime.

Susanne and Moppy felt bold today. They decided to get out of the house and explore a little bit of Boston. They had a few errands to run so they thought the best way to get it all done was to go to the closest mall. This way it would minimize them running around like crazy. They noticed that there was a stop to the local subway system close to where they were staying. They felt comfortable with this mode of transportation because of their vast experience with the D.C. Metro. It ended up taking much longer than they had anticipated. It wasn't as straight forward as they would have hoped. It also didn't make things any easier that they had a stroller to push around. Boston's subway system, "The T", was much smaller than the Metro. There wasn't nearly as much room on the actual individual cars as they were used to. The limited space, plus the fact that it was the weekend, complicated things.

They finally arrived at their final destination. They chose to eat first since they had skipped lunch. By the time they got to the closest restaurant, it was mid afternoon. Once they were settled in a booth, Susanne hooked Paxton up to his feeding. They enjoyed an elaborate meal while recovering from their recent adventure to get there. Paxton had time to recover too and took a short nap. It was nice to have some time to relax and not feel cooped up.

After they were done dining, they walked around the mall. They accomplished everything on their list. Paxton decided to spruce things up a bit when they were in the last store. He had a "SBD", silent but deadly, diaper. He usually had no shame in his game and announced his dirty diapers by introducing them with lots of sound. This one was different. This one was silent and unexpected. The smell that came from Paxton was shocking. It almost didn't seem possible that it had come from something so cute and tiny. Susanne and Moppy knew that if they were having difficulty being around Paxton, then everyone else must be struggling even more. Susanne actually dry heaved once early on until her nose became slightly desensitized to the putrid odor. They couldn't wait to get out of there. One so they could get some fresher air and two so other shoppers would quit looking at them funny as if they were the cause of the smell. This was the closest that Paxton had ever come to clearing out a room.

On their way home, they thought they had "The T" figured out. The trip back to the house should have been very straightforward. Unfortunately, they didn't realize that there were multiple lines that had stops all along the road they needed to get to. They got off at the wrong stop. They were much farther away from the house than they had planned. They had to walk multiple more blocks to get back. The positive side to this was that now they would pass the CVS so Susanne stopped for a sweet treat. Also, the extra walking helped to burn off some of the calories they had ingested at dinner.

They got back to the room around 8:00pm. They were not thrilled that it had taken them so long to do what they had done. Instead of dwelling on it, they pushed forward. They had a lot to do. It was pretty much the usual, like doing laundry, making more formula, pumping, pulling up medications, preparing Paxton's feeding, giving medications, setting up his feeding, and so forth and so on. They did not get done until around 10:30pm. Right as Susanne sat down, Paxton's enteral pump beeped. His feeding was completed. All she could do was laugh because this was a typical scenario she found herself in far too often.

She struggled to keep her eyes open after she actually got to sit down. It took all that she had in her to stay awake long enough to pump one more time before bed.

Breath of Fresh Air

2011-02-11T23:00:00.002-05:00

Last night was the first night that Susanne got to try out her new dual bottle warmer and bottle cooler. It was specifically designed to make nighttime feedings easier. She knew it would be more convenient, but she didn't know that it would change her life. Gigi was introduced to this phenomenal invention at the last baby shower she attended. She decided to get it for Susanne for this trip to Boston to hopefully make her life easier. She knew that everytime that Paxton needed a feeding, Susanne had to go from the third floor to the first floor to get the enteral bag and formula from the refrigerator. In order to heat the formula up, she would have to either run it under warm water or place it in a cup of warm water and wait until it reached the appropriate temperature. If Paxton was due for any medications, then Susanne would have to go down to the basement to retrieve the medication bag, pull up the medications, and bring the bag back down to the appropriate refrigerator. During the day, this wasn't such a big deal, but late at night was a different story. Now she could keep Paxton's enteral bag and evening feedings cold until it was time for them. When she needed to warm them, she just had to add water to the warmer and it would steam the bottle within seconds. It was brillant!

Susanne had to get up at 6:00am because she knew it would take her close to two hours to get everything ready and packed for the trip over to the hospital for Paxton's day of pre-op workup. She had to keep in mind that it was also a fifteen minute walk from the Yawkey House to Children's Hospital Boston. Susanne pumped first and then was going to hit the shower next. Unfortunately, both showers on their floor were occupied. She had to wait for over ten minutes before one became available. When she returned, she went to put on her makeup and remembered that she had run out of foundation the day before. Susanne didn't fear because she knew that Moppy had stopped by the mall yesterday to pick her up a new supply. When she asked Moppy for it, Moppy couldn't find it. She looked high and low for the foundation, but it was nowhere to be found. Now Susanne had to move into emergency mode. There was no way she could go an entire day without makeup...that was just a sin. They would ABSOLUTELY have to stop by CVS on their way to the hospital to find a substitute.

They were about five minutes late, which was mainly due to the difficulties they had with navigating the stroller through the ice and snow on their way to the hospital. Susanne had to first register Paxton for outpatient services in the admitting office. Luckily, this was the only appointment she had to go to without makeup on. Even though it was difficult, she survived. While they waited to be called back for their first appointment, Susanne had a chance to get dolled up. She felt much better after that.

At their next appointment, they were required to review Paxton's history in its entirety. This was no small feat. Susanne had to recall all of the details by memory because she didn't bring any of Paxton's medical histroy with her this time. It took her brain a few minutes to warm up, but then she was back on track.

Next, the nurse assessed Paxton. He weighed in at 18lb 1oz with his height being 29 inches. His oxygen saturation levels averaged around 92, but it went up as high as 96. He usually averaged in the high eighties, so this was impressive. His ECG looked comparable to what it had been in the past. Everything else checked out well, so he got clearance for the next phase of the pre-op workup.

While Moppy and Susanne waited to meet with the anesthesiologist, Susanne colored a picture for Paxton for Valentine's Day. It was a page of small hearts. She decided to go with a color scheme of reds except for the center heart, which she colored bright yellow. This was symbolized Paxton. It not only stood for his unique heart, but him as a whole. He stood out like a bright, shining star in a sea of others. His warmth emanating from deep within in him. Susanne was so proud of her sweet, baby boy. She was so blessed to have him as her special Valentine.

They met with the anesthesiologist and discussed in detail the plan for Paxton's surgery day. Susanne was able to ask questions and remind them of Paxton's medical issues. She made sure to request that they watch him extra closely after he was extubated because he couldn't swallow. Paxton didn't have a normal oral phase to his swallowing. He could only swallow as a reflexive response. There were definite times where he would panic and almost seem like he was drowning in his own saliva. This was by far Susanne's biggest concern this go-round. She wasn't sure how Paxton would respond to having his cleft palate closed, and still have to deal with the secretions in the back of his mouth with no escape route. She was sure that he would have even more saliva and some blood to handle after surgery because the surgery site was in his mouth. She was praying that his recovery from anesthesia would be uneventful. The doctor appreciated the reminders about Paxton's unique situation because not all children that had Pierre Robin Sequence had difficulty swallowing and definitely very few had additional heart disease.

After they were finished with the anesthesiologist, Moppy and Susanne were sent back out to the waiting room. This time it felt like they waited a lifetime for the next appointment. They were verbally informed of the plan for the actual procedure. They were given specific instructions about when to discontinue his normal feedings, when to discontinue his medications, when to feed him Pedialyte, and where to show up. Susanne was familiar with this whole process so it wasn't anything new.

Around 3:00pm, they were finished with all of the appointments. Moppy and Susanne finally got to eat some lunch. Susanne set Paxton up with his next feeding and he ended up falling asleep in his stoller. He had such a long day and was tuckered out. Even though he was all covered up, everyone seemed so interested in him. Some people even requested to see what was underneath the shade so they could sneak a peek. Everyone's response was always the same. They were all caught off guard by his cuteness. He was becoming a lady's man and he didn't even have to try.

Paxton didn't stay asleep long in his stroller because he could never get comfortable in that thing. Once he was back to the room, however, he fell asleep right away and napped the rest of the afternoon.

Moppy and Susanne decided to order in so they wouldn't have to take Paxton back out in the cold weather. The one place that they chose, wasn't delivering that night. This hardly ever happened, per the person that answered the phone, but it was just their luck. When they thought there was no hope for dinner that night, someone made a delivery of turkey wraps as a donation to the house. It couldn't have come at a more perfect time.

During dinner, Susanne and Moppy met a family that had been there for a couple of months. The daughter was suffering with something known as a neurogenic bladder and bowel. Usually, it was something seen in patients with spina bifida, but she didn't suffer from that condition. The doctors really couldn't find a reason for her to have the problems she had. The problem wasn't discovered until she was six years old. She was now eleven and had undergone numerous procedures to help her try to manage her bladder and bowel dysfunction. Unfortunately, the doctors had to resort to placing a colostomy bag and urine bag. She also had a G-tube, much like Paxton's, in order to be able to receive enough nutrition on a daily basis to maintain her weight. She had an amazing presence about her. She was very outgoing and precocious. She had an extremely positive outlook on life even though she had every reason not to. It was like a breath of fresh air that came at a perfect time in Susanne's life. God had such a funny way of working at times and Susanne was thankful for that.

My Funny Valentine!

2011-02-11T16:42:00.002-05:00

Boston Bound...Again

2011-02-10T00:22:00.006-05:00

It was warm and cozy when Susanne woke up. It was a nice change from the night before. She was so comfortable that she didn't want to get out of bed, especially since the cats were so snuggly. The morning came too quickly, but there was nothing she could do about it. There was no time for her to mess around. She had a lot of packing to do before she flew out this afternoon.

Luckily, the continuous feeding overnight helped her out some because she didn't have to get up at 6:00am. It gave her a little extra time to sleep even though his feeding finished around 7:30am. Paxton was sleeping heavily when she went in to disconnect his feed. He was out cold and didn't budge one bit. At least one of them was getting some rest.

Susanne tried to finish packing, but it was challenging. She found that it was hard to consolidate all of the items that were necessary for the trip. For some reason, she kept getting interrupted. In particular, the telephone would not stop ringing. Susanne had thought about not answering any of the calls, but she knew they were all important in their own right. One of the phone calls was from the pharmacy where Moppy was trying to pick up Paxton's prescriptions. Susanne had been going to the same place over the last year for all of his medications. For some reason, on the day they were flying out to Boston there was a problem. They were having issues with the insurance that they had on file. Susanne made sure that they had the correct information before getting worked up. The pharmacy technician tried to resubmit the request, but it was denied a second time. By this point, the girl was not interested in helping Susanne out any longer. She just wanted her to pay the full cost of the drugs so that she could move on with her day. Unfortunately, she didn't know who she was messing with. Susanne stuck to her guns. She knew something was amiss. Susanne requested to speak with someone else. Within a minute of the new person investigating the problem, it was resolved. Susanne was beyond frustrated with the entire situation. To make it worse, Moppy told Susanne that the original person helping her didn't want to dispense the aspirin because she said that Paxton was too young for that medication. Was she a doctor? Did she not she the prescription request for that medication from Paxton's cardiologist? Paxton was required to be on that medication. It didn't matter what she thought, it wasn't her choice.

Moppy finally arrived at Susanne's house. It was much later than both of them had expected. She stepped up right away with helping Susanne sort through everything. She was able to finish taking care of the little odds and ends while Susanne moved things from suitcase to suitcase until it all fit. Julie showed up right on time to take them to the airport. Everything was ready to be loaded in the car with the exception of Paxton. Susanne just had to change his outfit and strap him into the car seat before they headed out. They were so thankful that Julie was available to transport them. It helped them out tremendously. Caleb came along for the ride, but was sound asleep the whole way there. Paxton enjoyed his company nonetheless.

They got to the airport and checked in right away. It was pretty vacant so they knew they would have plenty of time to get to the gate. They were flying JetBlue again because it was one of the few airlines that flew direct to Boston. It was also the cheapest option in most situations.

Paxton was fighting falling asleep the entire flight. It was the first time that he didn't sleep a wink in the air. She was hoping that once he was back in his stroller he would settle. He didn't cry or scream at all. It was so nice that she hadn't been "that girl" with the baby that made the flight unbearable.

Right on cue, Paxton graced them with a dirty diaper as they were landing in Boston. Susanne remembered the mess he had made every time before so she was cognizant of her every move. When she finally got to a restroom, she realized her efforts were futile. Paxton had managed to explode out of his diaper and up his back just like last time. It was so bad that it even soaked through his outfit onto his car seat lining and even the straps. It was a given that they would have to do a load of laundry tonight.

Moppy and Susanne took time to grab a bite to eat at the airport before jumping in a cab to get to their final destination. It was nice to finally take a moment to regroup and relax. They met some very nice people while eating dinner. Everyone was in awe of what Paxton had been through. They took note of Paxton's incredible strength and, of course, good looks.

After dinner, they headed straight over to the Yawkey House. Once they checked in, they had to get right to work. They had to get Paxton set up with his next feeding and administer his next set of medications. He was due for another diaper change, but thankfully didn't need an outfit change again. Doing a load of laundry was a must. They had to include the car seat cover as well. They could only hope that it would be dry by the morning before they had to head out for his 8:00am appointment. By the end of it all, it took them almost three full hours to get to a point where they could sit down. It had been a long day. They couldn't wait for their heads to hit their pillows.

Brrrrrrrrrrrrrrrrrrrrrrrrrr!

2011-02-09T23:28:00.007-05:00

Susanne worked half of a day at work today. She had to head back to VA tonight because she was flying out tomorrow to head up to Boston for Paxton's next surgery. She didn't end up getting home until around 1:30pm. Poppy helped Susanne try to expedite the process of getting on the road so that she could get home as quickly as possible.

Even with help, Susanne didn't get on the road until 4:00pm. It was always such a production to go anywhere. She was getting tired of living out of a suitcase, but she didn't have much choice. Since she had been doing it for so long, she thought that the process would be shortened....obviously not.

She decided to pack a bag of tasty treats for the trip. She didn't take the time to eat lunch when she got home because she just wanted to get on the road. She made sure to take enough to tide her over for the whole way. After filling her tank up with gas, she decided to get a large sweet tea from Bojangles as the last addition to her collection of treats. She hadn't had sweet tea in so long and was looking forward to it.

Just like always, she had a six hour drive to get through. She did surprisingly well for not getting a lot of sleep and working half of a day. The frustrating part of the drive was that she was on the phone the entire time. She usually enjoyed this, but not when the phone calls were mainly focused on the recent water heater issues. She went back and forth between the home warranty company, the insurance company, the claims adjuster, the water mitigation company, and the heating and plumbing company. She was trying to figure out who was going to cover the water heater pan that was damaged. The home warranty company said that they would cover the water heater after the deductible was met, but not the pan. The insurance company said they would not cover the water heater after the deductible was met, but only the water damage that occurred from the water heater. If the pan was cracked due to wear and tear, then it would not be covered. Everyone was throwing their hands up and no one wanted to take responsibility for it. It made it difficult to get in touch with people because it was after hours for most people. The main problem was that the gentleman that was replacing the water heater was at the rental property and needed to know what to do. In addition to all of the chaos, Paxton was crying in the back seat. Susanne could feel her blood pressure rising out of frustration and had to pull over. Her temper was getting short with people that were not being helpful. She took a moment to breathe deeply and take care of Paxton. He always made everything better. She changed his diaper and held him for a few minutes. Once he was settled, she strapped him in and got back on the road.

When Susanne finally arrived home, she immediately noticed that it was colder in the house than usual. She had purposely turned the heat down while she was away, but this was way too cold for what she had set it at. She checked the thermostat right away. It read 42 degrees. She checked the setting, which was still reading 60. For some reason, the heat wasn't working. Could it be broken? She noticed that the sign for low batteries was blinking. She was hoping this was a quick fix. She switched the batteries out for new batteries that she had found in a drawer. Unfortunately, nothing changed. She called Scott to get some advice. It was way too cold for her, let alone Paxton. She decided to leave him in the warm car until she figured things out. She tried probably five sets of batteries from other functioning electronic devices and other batteries that were from a previously opened pack. She tried messing with the day and time on the thermostat. She tried adjusting the programmed heating schedule. She even tried to look in the basement at the furnace to see if the pilot light was on. No matter what she tried, nothing worked. After an hour and a half of trying to figure things out, Susanne was frozen to the core. She could no longer feel her feet and she was shivering. She could tell the cats were not happy either because they were balled up as tight as they possibly could be and didn't budge from their chosen spot. Susanne called the emergency number to the gas company to see what she should do. They informed her that they could not help her and she would need to call a HVAC company for assistance. Susanne tried calling Moppy and Chief to see if they could come over so a second pair of eyes could glance at things. Eventually, she couldn't stand it anymore. She had to get out of the house. She was going to have to ride around in the heated car until she figured out what to do. If the heat was truly broken, she would have to find somewhere else to stay tonight. This was not in the plans. It put a major damper on things especially since she still needed to pack for her trip to Boston. Packing for a week and a half for anywhere was a big undertaking. To do this for not only herself, but a child whom had medical issues on the actual day of travel would be a nightmare.

As she was driving, she thought that she might as well go to the grocery store and purchase a fresh set of batteries that were UNOPENED just for the heck of it so she could truly say she tried everything. Out of the two grocery stores that were close-by, she happened to choose the one that was closed. Luckily, the other one was open 24 hours, but now she had to drive out of her way to get there. By the time she got home it was now close to midnight. She prayed that this would solve the problem. Once she inserted the batteries into the thermostat, the flashing low battery sign stopped. Hallelujah! Praise the Lord! The heat kicked on immediately. She didn't understand why the multiple sets of other batteries didn't work, but at this point, she didn't care. The thermostat now read 40 degrees. She couldn't wait to get warm.

She started her unpacking process by bringing Paxton in first. She got him squared away in his bed before moving on. He actually appreciated his cold bed. She prepped his next feeding and caught him up on his missed medications. Next, she turned on the heating pad to warm up a spot on her bed for the cats. They caught on quickly and planted themselves right in the middle of it. It was easy to tell that they were ready to cuddle. She was shocked to discover how hard her Tempurpedic was due to the temperature. It was as solid as a rock. She was hoping it would soften up some before she had to climb in. She knew that wouldn't be for a while so she wasn't worried.

A load of laundry was started and the cat litter was scooped. She listened to the eleven messages that were on the answering machine. After one hour of the heat starting up again, it had only warmed up by five degrees. It was going to be a while before the place truly warmed up. Somewhere in the middle of all of this, Susanne scarfed down some dinner. She pumped to try to stay on somewhat of a schedule and then the packing began. She had to unpack just to repack for the next trip. She had to call it quits by 3:00am or she wouldn't survive tomorrow. Hopefully, she would get it all done.

On The Night You Were Born

2011-02-08T23:29:00.001-05:00

One of Susanne's dearest friends gave Paxton a special book for his birthday that was worth sharing with everyone. The moment Susanne read it, she knew that it had been written just for him. It really grabbed her in a way that no other book had since he was born.

"On The Night You Were Born"
By: Nancy Tillman

On the night you were born, the moon smiled with such wonder that the stars peeked in to see you and the night wind whispered, "Life will never be the same." Because there had never been anyone like you...ever in the world. So enchanted with you were the wind and the rain that they whispered the sound of your wonderful name. The sound of your name is a magical one. Let's say it out loud before we go on. It sailed through the farmland high on the breeze...over the ocean and through the trees...Until everyone heard it and everyone knew of the one and only ever you. Not once had there been such eyes, such a nose, such silly, wiggly, wonderful toes. In fact, I think I'll count to three so you can wiggle your toes for me. When the polar bears heard, they danced until dawn. From faraway places, the geese flew home. The moon stayed up until morning next day and none of the ladybugs flew away. So whenever you doubt just how special you are and you wonder who loves you, how much and how far, listen for geese honking high in the sky. (They're singing a song to remember you by.) Or notice the bears asleep at the zoo. (It's because they've been dancing all night for you!) Or drift off to sleep to the sound of the wind. (Listen closely...it's whispering your name again!) If the moon stays up until morning one day, or a ladybug lands and decides to stay, or a little bird sits at your window awhile, it's because they're all hoping to see you smile...For never before in story or rhyme (not even once upon a time) has the world ever known a you, my friend, and it never will, not ever again...Heaven blew every trumpet and played every horn on the wonderful, marvelous night you were born.

Bacon Cheeseburger with Fries Oh Me Oh My!

2011-02-07T19:47:00.006-05:00

Everyone started stirring a little after 8:00am. Susanne had been the only one that had been up prior to that to feed Paxton. Aunt Leah, Parker, and Gigi helped Susanne and Scott clean up the house a little bit before getting on the road. Scott and Susanne knew that they would be far behind them. They had so much to do before they could even consider heading out.

Paxton had a low key day. He played on his play gym while Susanne and Scott packed. Susanne had to go through stacks and stacks of papers to make sure that she did not overlook any bills or items that needed addressing this week. Also, she spent some of her time trying to get in touch with the heating company that was supposed to call her yesterday to address the leaking water heater at their rental property. This was the second time that this had occurred in less than one month. Everything always seemed to pile up at one time. It was a lot for her to worry about especially with the week she had in front of her. She was driving back to NC today. She would be working Tuesday and Wednesday. Then, she would have to drive back to VA on Wednesday night just to turn around and fly out to Boston on Thursday for about two weeks. The stress of dealing with anything outside of her norm was difficult for her. She wanted to be able to focus on Paxton and his upcoming surgery. She wanted the rest of the world to just stop for a moment.

Susanne and Scott finally got on the road almost five hours after Leah, Parker, and Gigi left. The only hold up at this point was that they still had to get gas, eat some dinner, and stop by the townhouse to take pictures of the water damage before they could start their journey back to NC. Susanne had decided to finish out the week celebrating Paxton turning one by continuing her dairy and soy filled binge marathon. Her request for her first meal out that had no dietary restrictions was her favorite bacon cheeseburger and fries from TGIFriday's. Susanne and Scott had done years of research on who made the best bacon cheeseburger. Time after time, they always seemed to pick this one. Susanne was so excited for the first bite. When it finally came, she was in heaven. Oh, how she had missed cheese.

Susanne was driving in hopes that Scott could get some work done during the drive. This didn't last long. Recently, anytime Susanne drove she would start to fall asleep. It was like a Pavlov's response. Within the first two hours of the drive, they had to switch. Scott encouraged her to take a nap for the rest of the trip. After a delicious treat of ice cream, she closed her eyes. Susanne had not had ice cream for far too long. This was probably her favorite thing in the whole world. She was enjoying her reintroduction to dairy and soy all too much. She just hoped that Paxton would enjoy it as well. She would know soon enough.

Black Cloud

2011-02-06T23:34:00.002-05:00

It felt like a black cloud was following Susanne around today. The only positive to her day was that her wonderful husband took over Paxton's midnight and 6:00am feeding so that she could catch up on some much needed sleep. She got a total of eight hours of sleep, which was the most she had had for well over a year. It felt sooooo goooooooood. Also, waking up to Paxton's sweet face didn't hurt either.

Paxton managed to poop through two of his outfits within the first hour he was up. He wasn't up long before he was ready to lay back down. Susanne's morning was busy with phone calls. She had to contact the home warranty company to follow up on a new claim about the water heater at their rental property leaking again. It was supposed to have been fixed back in January when it happened the first time. According to the heating company that went out to the house yesterday to assess the problem, the water heater needed to be replaced completely. She was trying to expedite the process so that her tenant would not be without hot water for long. Also, she had to call to place a claim with her homeowner's insurance about the ceiling and floor damage that had occurred. They set her up with a water mitigation company to help dry out the home to prevent molding. She was on the phone with someone from their company throughout the day. Hopefully, they would get out to the house by tomorrow morning.

Scott informed Susanne last night that Paxton was going to run out of Furosemide after his morning dose this morning. Luckily, Susanne had a prescription on hand so that she could have it filled here in NC. Her first opportunity to venture out of the house was right before Paxton's 3:00pm feeding. She thought for sure that she would be back before it was time to set him up. Unfortunately, when she went to pick up his medications she found out that Paxton's health insurance had been cancelled. She only found this out after calling them directly to see why she was being required to pay for the medication completely out of pocket. The news was shocking. She decided that instead of trying to figure it all out at the pharmacy, she would just pay it and investigate later.

Her next adventure was to try to find some new outfits for Paxton. He had outgrown the majority of his clothes at this point. It sounded like an easy task, but it was anything, but that. He required outfits that would allow Paxton's G-tube to be easily accessible. Any onesie that snapped between his legs or outfits that only buttoned around the legs were not user friendly. Separates were okay, but they increased the chance of his G-tube being caught on something since there was nothing protecting it. The ideal option was the infant footed pajamas that buttoned all the way down. Susanne had made the mistake before of buying the footed pajamas that zipped. This was definitely problematic. Susanne ended up conceding and purchasing a variety of styles for Paxton, despite them not being what she was looking for. She guessed desperate times lead to desperate measures.

It had started sprinkling when Susanne left the house. Now, it was pouring. She was struggling already to get around with a broken toe, but the rain made it that much worse. She was very glad to get home and so was Paxton. Paxton was ready to go straight to bed when they walked through the door. He could hardly keep his eyes open while Susanne changed his diaper and dressed his G-tube to prep him to go down. Susanne was ready to put her feet up as well. So much for a nice relaxing day to allow her toe to heal. Her doctor would not be pleased with her.

Susanne was looking forward to "The Bachelor". She knew that could cheer her up.