Don't You Ever Grow Up

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

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!

ROCKIN' IT OUT CINCO DE MAYO STYLE!!


OLE'

Barium Swallow

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

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

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.

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

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...

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!

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

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

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

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

"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

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!

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

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

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!

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

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.