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.

Poppy Time, Postponed Plans, and Pizza!

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

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

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!

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!

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

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

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?

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

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

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

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

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

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

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.