Click Your Heels Three Times

Moppy and Susanne spent all night packing and getting ready for their trip back home today. Once they got to a stopping point, Susanne still had to pump, set up Paxton's feeding and break it down. It was after 2:00am before she went to bed. When her alarm clock went off at 5:45am, she had to dig deep. She wasn't sure how she would make it through the day, but she had no choice. She couldn't even lay her head back down for one moment because every second was needed. They needed to be in the cab and on their way to the airport no later than 8:00am.

Things were going quite smoothly for running on empty until they went to checkout. The problem that they ran into was that the person that worked in the office at the place they were staying didn't get to work until 8:30am. She had left an emergency number for any issues that might occur between 10:00pm - 8:30am. Susanne thought that this qualified as an emergency handsdown. She called the number immediately, but no one answered. She left a message assuming that she would get a response quickly. After ten minutes, she decided to call the number again. She was informed that the person was still getting ready for the day and that she would be available shortly. The clock was ticking. Time was passing by. Susanne and Moppy were getting nervous because it was well past 8:00am. Finally, when they thought there was no hope in getting to airport on time, she showed up. They were out the front door and in the cab in no time.

The line for checking their bags was long. It was still questionable whether or not they were going to have to book it to the gate or not. Luckily, the process went faster than expected. It definitely helped that the gentleman working with them was very understanding about their unique situation.

They got through security with no problem and their gate was not too far of a walk. They got to the gate with a little less than ten minutes to spare before loading the plane. This was just enough time for Susanne to visit the restroom, change Paxton's diaper, warm his milk, set up his feeding, and grab a quick bite to eat. Now that was pretty impressive.

The flight home was uneventful. Paxton acutally slept the entire time. He was so thrown off of his normal schedule that he was falling asleep anywhere these days. The nice thing was that the flight was never bad going to or from Boston because it was a direct flight that lasted less than an hour and a half. This beat a nine and a half hour drive anyday.

When the plane landed, Susanne could tell that Paxton needed another diaper change. The first place they stopped once free from the plane was the bathroom. Susanne was not expecting the disaster that she found. He managed to spray poop up out of his diaper almost reaching his shoulders. She could not believe that Paxton was continuing to outdo himself. Susanne had to give him a mini bath in an airport bathroom. This whole process took so long that when they finally made it to the carousel to pick up their luggage, it wasn't there. They had already moved it to the office of unclaimed or lost luggage.

The shuttle from the airport to the parking lot took forever. All Susanne wanted to do was to be at home already. The traveling was starting to wear on her. She also wanted to get home as soon as possible because she was expecting Scott and Gigi at any moment. This would complicate things because she needed to try to prevent Moppy and Gigi from crossing paths. The whole reason for this was that Gigi was in on a surprise. Moppy was getting baptized tomorrow and she thought only Scott, Susanne, and Paxton would be coming. Susanne had to come up with creative ways to get Moppy on the road back to her house immediately. Luckily, it worked. She had been gone less than ten minutes when Scott and Gigi showed up. It all fell into place nicely.

Scott basically had to drop off Gigi and then head back out. He had a prior commitment that he had to fulfill. This gave Gigi and Susanne time to spend time with each other and catch up. Even though they didn't have that much to catch up on, they never ran out of things to talk about.

Once Scott got home, they ordered dinner and relaxed on the couch. They had all deserved a little "R and R".

My Butt...My Butt...My Butt is On Fire!

Moppy had taken the first feeding of the day so that Susanne could try to get a little more than four hours of sleep. This dream was short lived. Susanne was woken up from a dead sleep by the sound of Paxton gagging. No matter how hard she tried, she could not turn her mom ears off. She hopped right up to try to prevent him from aspirating on his spit. Moppy and Susanne sat with him for an entire hour trying to console him before he had exhausted himself out. He was ready for another nap by the end of it all. Susanne decided to try to lay her head down for another hour before she had to get up again to set up Paxton's next feeding. The monotony of his schedule was at times maddening.

Today, they decided to take their time getting ready for the day while Paxton caught up on his sleep. He had a lot to make up for from the busy day he had yesterday. Susanne stretched out her shower as long as possible. She enjoyed just standing under the warm stream of water and letting her mind escape the chaos of life. She took pleasure in fixing her hair and putting on her makeup. She rarely got to spend much time on her morning ritual because she always put her needs last when it came to Paxton. It was a nice change to pamper herself. Once Paxton was awake, Moppy played with him while Susanne finished the final touches to her face.

Paxton had been suffering from the worst diaper rash that Susanne had ever seen. The area was very bright red and painful. His skin even looked ulcerated in areas. The most interesting part about it all was that it came about after she increased the amount of formula Paxton was eating. That was weird because it was a formula that was specifically for sensitive stomachs. It was a hypoallergenic formulation that was helpful in reducing colic. It was also supposed to be safe for infants that had sensitivity to dairy or soy protein. It seemed very counter to what it claimed. Needless to say, Susanne thought it would be a great idea to let Paxton air out to help treat the severe diaper rash. While Moppy played with Paxton, Susanne left his diaper open with lots of absorbant pads underneath him to catch any disaster that may occur. He seemed to love this set up. Paxton seized any opportunity to go diaperless.

Moppy and Susanne decided to venture out in the winter wonderland to go grab a bite to eat. It was about a ten minute walk before they reached any area that had food options. It was actually nice to get outside and appreciate the natural beauty of the recent snow storm. There were multiple areas along the way that almost looked fake because the snow was so perfectly placed on the tree branches. Moppy and Susanne were in awe of the picturesque view. The best part was that Paxton thrived in weather like this. He loved the cold weather. Susanne was ecstatic that Paxton actually got to wear some of his winter clothes. He specifically had a cute fleece outfit, warm hat, and cute mittens that Susanne was certain he would never be able to wear, but she was wrong. Boston was the perfect setting for him to sport his gear and boy did he look cute?

Lunch was very relaxing. It was relieving to be able to have the time to sit down and eat something. Moppy and Susanne tried to make sure to head back in time to set Paxton up for his next feeding. Once they got to their room, Paxton was ready for a nap. He went right down. He was a little behind on his schedule, but not by much. By the time he was situated, Susanne had to pump. They could not believe that by the time she was done that it had been two hours since they had returned. Time always seemed to fly by.

Susanne was shocked that Paxton took a four hour nap. He must have been whooped. Once he woke up, it was time for dinner. They decided to order in to avoid walking in the frigid weather again. It wouldn't be smart to walk that far especially that late at night. Also, it would be wrong to expose Paxton to the harsh weather conditions again.

The delicious food was well worth the wait. The restaurant obviously did not believe in portion control because one entree could feed a small army. There would definitely be left overs.

Go Go Go!!!

Susanne was not excited when her alarm went off around 5:45am this morning. This was a rude awakening. She started off on the wrong foot last night because she didn't even get into bed until around 1:00am. She thought that she would at least get around five hours of sleep, but that dream was crushed right away. Paxton woke up crying around 2:00am and didn't settle until an hour later. Susanne was up the entire time consoling him and trying to figure out what the problem was. Moppy ended up staying up as well for moral support.

Somehow they managed to get out of the door on time. They were even able to catch a ride from security as a courtesy because they left before 7:00am. Once they arrived at the hospital, they had a few minutes to spare to grab some breakfast before their crazy day began. Paxton looked exhausted, which didn't bode well for the busy schedule he had lined up.

Paxton's first appointment was with the cardiology service. He got called back almost immediately to get weighed. When Susanne pulled him out of his stroller, she quickly realized that a bomb had gone off in Paxton's pants. It was the worst mess Susanne had dealt with yet. He had managed to explode out of his diaper and cover his entire back with fecal matter, soak through every inch of his fresh, new outfit, and stain his car seat cover. It was so bad that his baby blue onesie was now a new shade of brown. It was just mind boggling to think how this exactly happened. He literally had been in that outfit for less than an hour. It was difficult for Susanne to know how to approach this disaster. After assessing the situation, Susanne realized that he truly needed a bath from head to toe, but that was not going to happen. After Operation Clean Up occurred, the nurse could finally get his weight. It took so long to take care of the problem that the nurse had to go do other things until Susanne was ready.

Today, he weighed 17lbs 7oz. Susanne was pleasantly surprised that he had gained weight from the last time especially since he had just dropped a few ounces in his diaper right before the weigh in. What did he think this was....Biggest Loser?

Moppy was tickled to see that Paxton already required a wardrobe change. She was shocked to see the aftermath. Susanne had the evidence stowed away securely in a scented bag. Hopefully, the smell would not follow them all day.

Paxton's first scheduled test was an ultrasound of his heart. He was so overtired that his patience wore thin within the first fifteen minutes of them starting. He was crying, sweating, and eventually turning blue because he was so mad. The little tricks that usually worked to calm him down, were ignored by Paxton. Nothing seemed to help. He didn't care for the singing, the "shhhhhh"ing, the humming, his favorite toy, the fanning, the words of encouragement, or the soft, soothing touch from his mother. The ultrasound technician was very patient and understanding. She was wonderful with Paxton. She gave him time to fall asleep and get comfortable before proceeding any further. He was only able to shut his eyes for about twenty minutes before he had to be woken up for the next test.

Next, Paxton had chest radiographs taken. They were interested in comparing his heart and lungs to the films that were taken before his heart surgery that was done back in October. Paxton did well for the positioning of the x-rays. He stuck it out for the whole process, but was not thrilled. He was being such a trooper for being so exhausted.

After they were finished in Radiology, he was past due for his next feeding. Moppy and Susanne made sure to give his medications on time, but waited for the first break between appointments to set up his feeding. Once he was set up, they moved to the Craniofacial and Plastic Surgery department. They were early, but this gave Paxton time to recover. It was sad to see the number of children that were in the waiting room. They were all dealing with different problems, with each one being more heart breaking than the next.

The craniofacial surgeon informed Susanne that he wanted to schedule Paxton for his cleft palate repair as soon as the cardiology service gave Paxton clearance for surgery. The surgeon didn't want to take any risks with Paxton. He wanted to make sure that his heart was stable after his major operation in October. Hopefully, the cardiologist would give them the green light. It was ideal for Paxton to have this procedure done before he was 12 months of age, but in his situation he felt it was safe to do it later as long as he had it done before 14 months of age. The doctor spent some time educating Moppy and Susanne on the procedure that Paxton would have done. Paxton would have to stay in the hospital again and would be monitored under the cardiology service post-operatively. Susanne felt great to have a plan in place. It was always nice to know what the next step was going to be.

After they finished with that appointment, they had to venture back over to cardiology to discuss the test results. Susanne was so delighted to see the cardiologist that had taken such great care of Paxton during their previous visit to Children's Hospital Boston. He was excited to see them too and he was beyond thrilled with Paxton's overall progress. Paxton's blood pressure appeared to be well managed with his medication. Also, Paxton's oxygen levels looked great. They ranged between 89 and 90. This was the best that it had been for the majority of his life. This meant that he had great perfusion to his tissues and the Glenn shunt was doing its job efficiently. The ECG was unremarkable overall. There was no evidence of any arrhythmias so he was able to discontinue one of his medications, Amiodarone. At the end of the appointment, he showed them the difference in the pre-op and post-op radiographs. There was a remarkable improvement with the over heart size. Also, the lungs looked clear and there was no evidence of aspiration. The cardiologist informed them that he was unable to fully assess certain aspects of the heart ultrasound that was completed earlier. Some of the important views that he needed to evaluate where skewed because Paxton was moving a lot during his mental breakdown this morning. He could say for sure that the tricuspid valve had trivial regurgitation compared to previous free flow through that valve. The Glenn shunt was patent and getting a sufficient amount of blood to the lungs. The left side of the heart was functioning close to normal. The areas that were still in question were the right ventricle and the pulmonary artery. The cardiologist wasn't sure that either of them were doing much of anything, but he couldn't completely tell from the views that were taken. His plan was for Paxton to return to have another ultrasound of his heart when he came back for his cleft palate repair. Paxton would be under anesthesia, so this would allow him to get what he needed to get a true handle on how Paxton's heart was doing. He also wanted Paxton to come back in three months for a follow up MRI of his heart and another ECG. Once he had all of this information, he would be able to determine how well Paxton's heart was doing overall. Unfortunately, he felt pretty confident that Paxton would require another heart surgery, but he just wasn't sure what at this point.

As they finished up with cardiology, it was time to feed Paxton again. They found the ophthamology department first before getting him all set up. Paxton was seeing a neuro-ophthalmologist for the evaluation of recent light sensitivity and assessment for Moebius syndrome. When Paxton was finally called back, they first discussed his extensive medical history. This always took up a lot of time. Afterwards, Paxton had a series of tests done. The doctor looked at how well he was tracking objects, assessed his pupillary light response, tested to see if he would look towards a pattern if one eye was covered...etc.. Also, he had a direct and indirect fundic exam performed, intraocular pressure assessed, and evaluation of his lens. The ophthalmologist was actually able to assess the severity of his farsightedness. Currently, he was positive 4. All babies were born farsighted, but it should correct itself by now. She was interested in a follow up appointment in 3 - 4 months to reassess his vision. She was comfortable with saying that his cranial nerve 6 was intact and functioning well. It was the cranial nerve 7 that was still in question. She thought that there was definite evidence of function, but there were some other minor concerns that made her want to investigate further. She witnessed his ability to smile, frown, and have a furrowed brow when crying. She did also see that when he smiled, he had visible nasolabial folds. This would not be possible if cranial nerve 7 was not working. She took multiple pictures to document his different facial expressions. Scott had previously raised concern about his left eye possibly being lazy. His left eye tended to prefer to migrate towards his nose. She did not have any concern with this observation because he proved that he could move his eye normally in all directions. Also, she mentioned that before the nasal bridge develops, the sclera, the white part of the eye, can be less visible. The only other thought was that because he was farsighted at this time, he may cause his eyes to move towards his nose to try to help focus on objects. She thought that this would improve as he aged. All in all, she did not feel like he had Moebius syndrome. She did, however, want to consult with a neurologist that she knew personally that specialized in Moebius patients. She would send the pictures from today's visit along with her exam findings to see what her opinion was. If she was suspicious at all for this syndrome, then the recommendation would then be to schedule an appointment with her to assess Paxton. The doctor was also going to relook at the brain MRI that was done in October. If they took images as far down as the brain stem, then she should be able to confirm if cranial nerve 6 and 7 were normal in appearance.

Finally, they were finished for the day. They had not had time to eat or drink anything all day. They were half starved. They ate dinner before leaving the hospital and took some time to shut off their brains before heading back to the Yawkey house. They decided to walk back despite the bad conditions outside because they felt like they needed the fresh air. Even though it was already dark out, it was well worth the risk.

When they got back, they got Paxton situated and in bed. They spent the rest of the night getting everything back in order before sitting down to try to recover from the exhausting day. They would all sleep well tonight.

Boston Blizzard

First thing this morning, Susanne checked the status of the flight to Boston that was scheduled for early evening. It had snowed only about an inch in Northern Virginia, but Boston was expecting much more. Luckily, flight was still a go.

Susanne had planned on getting ready for the day after she started Paxton's 9:00am feeding. Paxton had other plans. He woke up crying, sweating, and gagging. He also appeared mildly swollen, especially in the face. Susanne was concerned that he wasn't handling the changes that had been made to his feedings over the last couple of days. She had backed him down to 115ml of food every three hours. She thought that this change would have improved his situation. He didn't seem like he could get comfortable. He turned blue when having one of his crying fits. Afterwards, he was pale for awhile until he was able to regroup. Susanne was eventually able to shower, but then had to literally sit with him until Moppy arrived. He had worn himself out enought that Suanne was able to put him back down for a nap. It was definitely short lived. He woke up right as Susanne planned on pumping. He was irritable and the cycle started all over again. He had done something similar the day before. It truly had to be difficulty with the amount of food he was receiving. This was confirmed when Susanne removed his extension from his G-tube and formula came spilling out. This wouldn't be so odd if he had just eaten, but it had been almost three hours since the last one was started. Susanne and Moppy bathed Paxton to see if this would help him to feel better. He always loved bath time. It had to be soothing for him. Moppy was able to comfort him while Susanne finished getting ready and finished putting the final items in her suitcase. They felt pretty good about their timeline until their goal time for leaving passed them by.

Finally, they got out of the house. The roads in Susanne's neighborhood were bad, but not once they got out on the main roads. They had a total of three suitcases, two purses, three bags that were filled with other bags of stuff, a car seat, stroller, and Paxton. This was what they called fully loaded. They weren't sure how they would condense it anymore than they had already done. This was the best that they could do. Hopefully, the airline would be understanding.

The person who helped to check them in was hesitant at first to assist them with their obvious problem. After showing her the letter that Children's Hospital Boston had written for them when Paxton was discharged in October, she was more compassionate. She allowed them to check Paxton's suitcase which was a life saver. Moppy stuffed her purse in one of the bags, which was the key to making this work. They now had checked the three suitcases and condensed the others down to two carry ons apiece.

Going through security was always tricky. This took the most time out of everything. Every item had to go through screening. They had to remove the medications, the laptop, send the car seat through, take off their shoes, remove their coats...etc. By the end of it all they had over ten full containers to be evaluated. Susanne even had to take out her fortified breast milk and the premade formula for testing. Hopefully, this level of security was worth it.

After they finally got through security, Susanne needed to find a bathroom stat!Paxton had a dirty diaper since they arrived at the airport and it couldn't wait any longer. She had been noticing over the last few days that he was developing the worst diaper rash that he had ever had. It even looked ulcerated in places. She had been applying Desitin with each diaper change. She could tell that it hurt him when she wiped his bottom. The shorter time he had in dirty diapers the better. She was hoping that once they got to their final destination that she could actually let him air out some. She knew he would love that.

The flight was uneventful. Paxton did well as always with the exception of a few whines here and there. Susanne was so pleased that he actually got a cat nap in during the ride.

When they arrived in Boston, they were told that it had snowed 15 inches last night. The city was covered in white. They were hoping to be able to catch a cab to their final destination with no problem. They ate dinner before leaving the airport because they weren't sure that anyone would deliver food in this kind of weather. This was the best decision that they had made all day. They were starving, but didn't even realize how badly until they sat down for a few seconds.

They got to the house they were staying in safely. When they arrived, a gentleman helped them carry their belongings inside. It was amazing the generosity of people, especially when it was least expected. The check in process was quick and before they knew it they were settled in their room. It didn't take long before Paxton's bed was set up. He was so tired that within seconds after his head hit the pillow, he was out. Goodnight Boston!

All Heck Broke Loose

Today, Susanne had the overall feeling of being overwhelmed. It kind of crept up on her when she least expected it. It started early in the day when she was trying to get Paxton prepared for his appointment and the phone wouldn't quit ringing. How was she supposed to get ready herself if she kept getting pulled in fifty different directions.

Right before Susanne was finished getting ready, the doorbell rang. The therapist arrived just as Susanne finished changing Paxton's diaper. They got started right away. Susanne and his therapist worked on some facial and oral massage first. Paxton tolerated it well and even opened his mouth when prompted. His tongue was moving forward nicely. He even would move it side to side. There was an occassional gag when his tongue would come too far forward. Next, they moved on to working with different types of pacifiers. Susanne found that Paxton accepted the Playtex orthodontic pacifier because of it's thin size and flat shape. He never allowed Susanne to push the pacifier all the way into his mouth, but he would explore it with his tongue. She was able to get it past his gums several times, but with extreme caution. Lastly, they moved on to oral feedings. He did wonderful with the three bites of pureed apples even though it would take him over five minutes per bite to get the courage to swallow. He was starting to look like he was understanding the concept of opening and closing his mouth to move the food around. If he was offered something he didn't like or a texture that was unappealing, then he would not move his mouth or tongue at all. He was one clever little dude. He was apprehensive with the pears at first, but eventually accepted them. He didn't seem to mind the blueberries at all. He may have even smiled a little. Unfortunately, he still had a hang up with bananas. He was less than impressed with them all together. At the end of this session, they finally decided to eliminate bananas from his diet for a while since it always seemed to initiate a gag response. No bananas for the monkey. How sad!

During the therapy session, one of Susanne's favorite people showed up for a little visit. Elissa, a.k.a. Thorny, hadn't seen Paxton for a while and wanted to get a refill on her Paxton fix. She was a nice distraction for Paxton. He stared at her for the last half of the session as if he was lovestruck...and seriously who wouldn't be. She talked to him sweetly and encouraged him along with the rest of them. Susanne thought she was an amazing cheerleader.

After the session was over, Thorny got to snuggle with the bug. She got to really feel how big he had gotten since the last time she saw him. He was laughing a lot and sticking his tongue out to show off. She played a new game with him where she would point the palm of his hand until he would grab her finger tightly. He thought this was pretty fun. Paxton went downhill quickly. He was visibly tired from all of the hardwork this morning. He was yawning and rubbing his eyes in no time. Thorny put him in his bed while Susanne set up his next feeding. Unfortunately, Paxton had something to say about that. Something made him very upset. He got overheated and started sweating to the point of no return. The area around his G-tube site was a little irritated which didn't seem to help the situation. After some loving from his mama, he quieted down and he was off to bed.

Thorny was so thoughtful and brought Susanne some lunch. They caught up on each other's lives over a great meal. The time sped by too quickly and before they knew it Thorny had to head off to work. It was a special visit and both Susanne and Paxton were glad that she stopped by.

Susanne noticed that she had missed four phone calls during his appointment. The first one was the airline informing her that her flight was cancelled for tomorrow. This set her into panic mode because she had to get to Boston some how. Paxton needed to make his appointments that were scheduled. She immediately tried to figure out a solution to the problem. Susanne didn't care if their was snow, sleet, or hail...she was going to get up there somehow. She decided to contact the airline directly to reschedule the flight. Luckily, they had opened up some evening flights that would work out.

One of the other phone calls was from the tenant of Scott and Susanne's townhouse. She was calling with a second major problem, this time she was concerned that the washing machine was leaking. She had noticed that there was water everywhere in the laundry room. Also, there was water dripping down onto the first floor. Susanne called the home warranty company right away to open up a second claim. She described the situation at hand and got set up with a company that could repair the broken washing machine. She called them once she got off the previously made phone call and set up an appointrment. Not even thirty minutes later, she got another phone call from the tenant indicating that she didn't think the leak was from the washer anymore. She now suspected that the problem was the water heater. The tenant was unable to get hot water, which was not a good situation to be in especially during the winter. Susanne had to call the warranty company right back to cancel the previous claim and then open up a new one. Once that was determined, she had to call a different company to set up an appointment to fix the water heater. Afterwards, she had to call to cancel the other appointment for the washing machine. She updated the tenant on the situation. The goal was to have the furnace and the water heater repaired by the following day. The tenant called shortly after they got off the phone to let Susanne know that the water had continued to leak through the ceiling onto the first floor. Susanne informed her to shut off the water until otherwise told. It was mentioned that there was a lot of damage to the ceiling, which was not what Susanne wanted to hear. She felt horrible that things appeared to be falling apart, but there was nothing she could do until the technicians from each company could evaluate each individual problem. Susanne was so upset that this had occurred. It was definitely poor timing. She wanted to be mad at someone or something, but it was no one's fault. Hopefully, the four hours of phone calls would pay off. Susanne was hoping to take the rest of the night off from the world. Unfortunately, she would have to find the energy to pack for the upcoming trip to Boston.

Moment of Silence

It made no difference that Paxton and Susanne were at home, Paxton still woke up gagging and vomiting. Thankfully, it still seemed to only be associated with when he first woke up for the day.

Paxton was only up for a short time before wanting to go back down for a nap. He had already slept until after 10:00am, but he obviously didn't think that it was enough shut eye for one evening. Paxton slept so long once he had been put down that Susanne actually had to wake him up for his 2:00pm therapy appointment.

Today, they were going to work on motor skills. Susanne was excited because she learned some new tricks. She was shown how to work with Paxton on a stability ball. The different techniques and movements she was taught encouraged him to use his core. He was really working hard on righting himself and he did wonderful with lifting his head. He did seem to tire after about thirty minutes of hard work.

Susanne could not believe how quickly the day passed her by. She had jumped right back on the band wagon without hesitation. Her phone calls and e-mails seemed to start the moment her eyes opened. She couldn't believe how busy she was and she hadn't even been back in town for more than 24 hours. It was crazy how her "to do list" was neverending. It was nice to be back at home or better known as her "office" because she had access to everything she needed to complete the things on her list.

Susanne and Paxton played together once he woke up after his afternoon nap. Susanne continued to enjoy laughing in Paxton's presence just to get him to laugh in response. It was the cutest thing ever and it brought joy to her heart. Also, Paxton had been trying to form different sounds. He had been working on the "M" sound for the last few days. He was intrigued by his own voice. It was so interesting to witness the transition from pointless cooing to mimicking sounds to intentional back and forth conversation to attempts to actually form sounds that made sense. Paxton was growing up right before her eyes.

The most memorable part of the day was that Susanne had officially used the last of her stored breast milk. Yes...that's right people, both deep freezers were completely empty of all milk. Susanne thought that this day would never come. She was expecting to be feeding Paxton breast milk until he was a teenager with how the freezers looked months ago. Now there was no evidence that it was ever even there at all. This was such a bittersweet moment. It was sad to see that there was no more, but it was awesome that Paxton was able to benefit from it for so long. What a monumental moment it was! It was so much so that Susanne felt that it deserved it's own moment of silence.................

Now she would depend on the pump and serve method. Whatever she made, Paxton would get right away. She was so glad that she had started transitioning Paxton a few weeks ago to his new concoction. He appeared to be handling the mixture of 50% formula and 50% fortified breast milk rather well. Susanne planned on continuing to pump as long as she continued producing. She was hoping that the fact that she was still incorporating some breast milk in each feeding that Paxton would still benefit from her antibodies. If science was right, any antibodies that Susanne had produced in response to the viruses she had been exposed to would then be transferred straight to Paxton for protection against getting sick. How awesome was that! So far it seemed to be working. Paxton had never had any flu or cold symptoms. According to Susanne's friends that had children, this was unheard of. Susanne was just thankful that he caught a break somewhere. That was the least that he deserved especially with all of the other medical issues that he was already having to deal with.

Harry Potter to the Rescue

Scott took the 6:00am feeding so that Susanne could try to rest up as much as possible before her six hour drive today. She was hoping to leave by noon, but she knew that she needed to add two hours to whatever she had set her goal time for. It was just how it always seemed to work out no matter how hard she tried.

Susanne started her day running. First, she pumped. This always took up so much precious time. Next, she set up Paxton's next feeding. During his feeding, she started sorting through what she needed to take back to Virginia with her. She also needed to think about what she would need for the fast approaching trip to Boston. She was taking Paxton up there for a follow up cardiology appointment as well as for a consult with the craniofacial team and a neuro-ophthalmologist. As she was moving everything she would be taking with her to one area, she heard Paxton gagging. She rushed in to scoop him up to try to prevent a major disaster. She got to him just in time, but he ended up vomiting all over himself. Susanne couldn't believe that she dodged a big bullet. She was in the line of fire the entire time, but only a small amount of spit up got in her hair. Luckily, her outfit was salvaged. Scott brought Susanne breakfast in the middle of everything. This was the most helpful thing he could have done especially since meals were often an afterthought for her because of her busy schedule. She took time to eat while Scott tried to help finish gathering her things. Gigi ended up sitting with Paxton so that someone could keep a close eye on him. She played with him using some of his new toys that he got for Christmas.

Scott and Susanne spent some time packing all of the bags and suitcases. By the end of it all, there was a total of two suitcases, two breast pumps, six bags full of stuff, one cooler, and one purse. Not to mention the car seat with the bug and his equipment for his feedings. Yikes. How in the world would they condense all of this for Boston? It had been done before, but it still seemed impossible.

Susanne and Paxton finally got on the road around 3:00pm. This was definitely much later than she had hoped, but it was too late to do anything about it.

Poppy had made the suggestion earlier in the day to take a book on tape for the ride. He had the complete series of Harry Potter books on CD that he recommended. Since they had just watched the third movie in the series, "Harry Potter and the Prisoner of Azkaban", he thought this would be the most appropriate choice. He was right. This helped Susanne tremendously during the drive and it was actually interesting. She had never listened to a book on the road before. She had always avoided them because of her short attention span. She thought for sure that she would lose interest pretty quickly, but that was not the case. The key to success was the fact that she had just watched the movie. It helped her to visualize what they were talking about.

Paxton did well durning the trip. He had his car seat lined with freezer packs and his own personal fan attached to the side. Susanne had made sure to also supe up the car seat with a variety of toys. Some crinkled, some lit up, some played music, and some were just plain cute. This decked out seat kept him entertained and cool up until they were thirty minutes away from home. He started to cry, wail, scream, and eventually sound like he was holding his breath. His personal fan helped in the beginning, but then Susanne had to add in rubbing his head. This seemed to soothe him enough to quiet him down for the last few minutes before pulling into the driveway.

Susanne immediately took him upstairs and got him out of his car seat. This was definitely his nemesis. She changed his dirty diaper, took him out of his clothes, and let him cool off. Within minutes, he was smiling and laughing. It was amazing how easily he got over things. Susanne loved that about him.

Paxton was worn out from the drive. He was dead asleep within the first hour of being home. Susanne was then able to unload the car, pump, eat some dinner, sort through mail, and most importantly catch up on her favorite TV shows.

Crisis Averted

Susanne spent her morning by herself while Scott was at a meeting for local photographers in the area. She thought that she would be able to hang out with Paxton, but he didn't wake up for the day until noon. Susanne had been noticing that he was having difficulty going down for the night for the last few days. He would finally fall asleep around midnight. Most of the time, he would still wake up for a short time between his morning feeding. It was uaually not by his choice because he would wake himself up gagging.

While Scott was out, he was going to try to get a refill of one of Paxton's medications. They had never used a different pharmacy than the original ones that they started out with, but desperate times call for desperate measures. Paxton had been given the last amount of the medication this morning. They would need to get their hands on more of it before 3:00pm when the next dose was due. Susanne had Moppy pick up refills of his medications earlier in the week, but they were in Virginia. She did not predict that she wouldn't have enough to get her through until Sunday. Susanne had Paxton's cardiologist fax her a prescription yesterday to help try to solve the problem. They thought that they had averted the issue until Scott found out that the medication had to be compounded and there was no compound pharmacist working today. When Susanne called over to the pharmacy, she was able to work her magic and find a pharmacist that was willing to do this for them. They were so thankful for generous people.

Scott and Susanne were hoping to be able to sit down and watch a movie together at some point. Unfortunately, this didn't occur until later in the evening. Even though it shouldn't surprise them at this point that their time was not their own, it still bummed them out at times. They decided to watch the third Harry Potter DVD in the series. Susanne and Scott didn't know much about Harry Potter, but their interest was piqued after watching the first one with Poppy. Scott made delicious Shirley Temples as a treat. They ended up having to stop and start the movie a few times because of a variety of reasons including keeping up with Paxton's feeding schedule. He actually woke up at one point and was able to join them for a portion of the entertainment.

After the movie, they were exhausted. They were still going to try to push through and stay up to watch Saturday Night Live. Good luck with that!

Oh Happy Day

Paxton had a great day today. He only had one minor gagging episode before his first feeding of the day, but nothing after that. He laughed a lot and seemed very happy. He even mimicked Susanne when she would laugh. She would start then he would follow up with a deep belly laugh. They carried on like this multiple times throughout the day. Susanne was able to work with Paxton on oral feedings later in the afternoon. He took about eight spoonfuls of a mixture of apples, pears, and sweet potatoes. He didn't gag, but he had some difficulty swallowing towards the end. For the first time, he was actually smiling during the feeding session. He really seemed to respond well to Susanne's positive reinforcement. Her cheerleading skills impressed him more than they ever had in the past. Susanne worked on trying to get Paxton to support himself more in the sitting position. Also, she tried to encourage him to lift his head and hold it longer during tummy time. Paxton was even receptive to the pacifier being placed on his lips. His little tongue would come out and explore the foreign object. He resisted it being placed in his mouth all the way, but that was understandable. Anything that made him feel like he was losing control, caused him to panic and made the difficulties with swallowing a lot more challenging. All in all, he did a great job today. It was only when she went to put him down for the night that he started to rebel. He didn't cry, but he was restless and wouldn't fall asleep. This was very unlike him. She ended up holding him for a little while until he finally released all of the gas that must have been building up the entire day. It was so loud that it startled him. It was quite the sight to see.

Paxton had been doing well with handling the mixture of fortified breast milk and formula that was calculated out to be 30kcal/oz. Susanne was pleased that he was managing the change. As she was preparing one of his afternoon feedings, she was reminded how quickly she was running out of milk. She only had one more full bag of about ten containers full of breast milk. After that was gone, she would have to rely on whatever she pumped daily which was not a lot. This made her sad that she may not make it to Paxton's first birthday. What a bummer.

You Got Fooled

Scott and Susanne thought that they had hit the jackpot. Paxton did not wake up gagging or vomiting during the 6:00am. He even slept right up until Susanne went in to start his 9:00am feeding. Unfortunately, it was too good to be true. The second Susanne walked in his room, he started with his horrific episodes. She spent the next hour consoling him, wiping his face, changing his outfit five times, and so on. This put Paxton's feeding schedule off by about an hour all day.

Susanne cooked everyone sweet and sour grilled shrimp with cilantro rice and a salad on the side. Not many people use their grill during the winter months, but she did. The dish would just not be the same if it were cooked any other way.

Leah stopped by for a short time this evening. She was able to hold Paxton for a little while before she had to leave. She got to see him attempt to make different vowel sounds and purse his lips together. She was really impressed. She even got to hear him laugh at things that she was saying or doing. He even laughed so hard that he ended up spitting up with most of it coming out of his nose. After that, things weren't so funny anymore.

To Gag or Not to Gag

Susanne and Scott were starting to wonder if they would ever have a morning when Paxton wouldn't be gagging and vomiting. Scott had to hold Paxton for over an hour early this morning before his first feeding. Scott and Susanne had to swap places when Scott had to leave for work. Susanne was hoping that he would recover soon. It was so difficult to watch him suffer through this every morning and there was nothing they could do about it. It was starting to become unprovoked and unpredictable. They thought they knew the reason behind the episodes, but now they weren't so sure anymore.

Paxton did well the rest of the day.

Susanne decided to make some gourmet burgers for dinner along with fries and salad. She wanted to make sure to have something ready for Poppy, Gigi, and Scott when they all got home from work. They were able to watch a little TV before heading off to bed. It was a must that everyone had some time to wind down before starting all over again the next day with the same old routine.

Countdown to the Big Day!

It was such a hard transition for Susanne to go back to doing all of Paxton's feedings all by herself even though she had only had help for about a week now. The fact that he was in the hospital right before she had come down to North Carolina probably gave her a false sense of reality as well. The 6:00am feeding was definitely the hardest to get up for. She had always been a night owl so staying up late at night was never a problem. The fact that she was running low on sleep, running ragged from Paxton's demanding schedule, and having to get up in the wee hours of the morning put her at a major disadvantage.

It was shocking to Susanne how it appeared that everyone always knew when she had returned back home. The phone calls would start early in the morning and not end until late in the evening. In addition to people hunting her down, she also had her own set of call-backs to do. She guessed it was back to work for Paxton. Her second job as his personal assistant was neverending. There was never a dull moment. Today alone, she was on the phone with Paxton's nutritionist, someone from the company that would be providing Paxton with home healthcare, the insurance company, their realtor, and she even took a survey on Paxton's recent hospitalization. The average for each phone call was around thirty minutes. By the end of it all, Susanne was tired of talking.

Paxton had a therapy session scheduled early this afternoon. Susanne worked on some oral and facial massage before offering Paxton any food. Susanne started with apples like she often did. By the third spoonful he started gagging and ended up spitting up. Susanne allowed him to recover before proceeding with the next food. Next, she offered Paxton sweet potatoes and then butternut squash. He was trying really hard not to touch the food with his tongue. He would let the food just sit on his gums until he had no other choice. Susanne finally moved onto pears. It was during the third spoonful that he starting gagging again. Unfortunately, once he started, he couldn't stop. It ended with a fountain of everything they had been feeding him over the last forty five minutes. They decided to stop the feedings at this point. They did not want him to have a bad memory of the session. They decided to distract him and get him to focus on other things. Hopefully, this wouldn't cause him to back track the next time they attempted to feed him by mouth. The therapist reminded Susanne that when he got worked up like this she should place her hand on his chest and slightly pull down. This stretch of his chest allowed him to release a lot of his tension and encouraged him to calm down. In turn, he could breathe better.

Later in the day, Susanne and Paxton went to visit Julie. They wanted to see how she was doing and spend some time with her before she had her baby. Susanne was especially excited because she got to see the finished nursery. It was absolutely beautiful. Now, the only thing it needed in order to be truly complete was her little baby boy. Susanne decided to bring Mike and Julie a bag of "must haves" for the big day. She included things like bottled water, trash magazines, blow pops, and tissues for Julie. For Mike, she included things like Mountain Dew and a variety of snacks to help keep him charged and ready to go. He had a very important role to uphold. She couldn't let him fall down on the job. They were thrilled with the gesture. Julie made chicken enchiladas for dinner. While she cooked, Mike got some practice being a daddy by holding Paxton. He seemed very comfortable with a baby. This was a good sign. Julie encouraged Susanne to stay and enjoy a warm meal. This was definitely a set up because she knew Susanne couldn't say no. She never turned down Mexican food. During dinner, Paxton tried out Baby Hart's bouncer. He had to break it in and give his own personal review. His final assessment was good. He approved and enjoyed it thoroughly. After dinner, they stayed for the lighting of the candles for Hannukah. Since the first year Susanne and Scott lived in Virginia, they always went over to Julie's house during Hannukah to help her celebrate. Even though they didn't observe this holiday themselves, it was neat to learn about it. For years, they would have a potato shredding contest for the homemade latkes they would make. Out of all of them, Julie was definitely the pro. It was special that Paxton got to celebrate with them this year. They even had him light one of the candles with Susanne's assistance. During the lighting of the candle, as well as mid prayer, Paxton decided to make some noise of his own. He pooped for what felt like an eternity. They couldn't help but laugh the entire time. His timing was always impeccable. Before they knew it, it was time to go. Susanne had only brought enough milk for one feeding so they had to make it back home before he was due for the next one. They had a nice visit. Now it was just a waiting game. They couldn't wait to meet the new baby.

Always Two Steps Behind

Susanne was up around 5:45am this morning. She needed to get on the road as soon as possible because Paxton had his first appointment of the day at 2:00pm with his pediatrician in Virginia. Once Paxton was set up with his first feeding, she still had to shower and finish packing. There was always so much that she couldn't do the day before. Most of it she had to wait to pack until right before she was walking out of the door. The reason for this was that Paxton was either still using certain items or the items needed to be kept cold. There never seemed to be enough time to do it all. There were always too many things that needed to be done. If Susanne could just clone herself, maybe this problem would be resolved.

After setting up Paxton's continuous feeding for the six hour drive and lining his car seat with ice packs, they were on their way. Susanne knew that they would have no time to stop anywhere because they were already behind schedule. Luckily, Paxton only cried once throughout the entire trip. Within minutes of him shedding his first tears, he resolved whatever problem he was having on his own. The good Lord must have been looking out. The bigger issue that Susanne faced was that she desperately needed to go to the bathroom. She had too many liquids this morning that seemed to have run straight through her system. It didn't matter how bad it got, she was determined not to stop, no matter what. She was running late and she didn't want to add to her time. She had already contacted the pediatrician's office earlier in the day to let them know of her whereabouts. She wanted to make sure that she didn't need to reschedule. They were very understanding of Susanne's circumstance and told her they would hold her appointment. Susanne and Paxton were well known at the doctor's office by now. They knew that she was traveling back and forth from North Carolina to Virginia every other week. They always tried to be very accomodating to her because of her unique situation. Susanne could not think of many businesses that were that caring. She continued to feel extremely blessed to have found such an awesome pediatrician and never took any of the staff for granted.

Susanne ended up being just around fifteen minutes late. She rushed inside as quickly as her little legs would get her there. They took them right back to an exam room to get started. First, they got Paxton's weight, which they did at each visit. Today, he was 16 lbs 8oz. He was still gaining weight even though it wasn't at a rapid pace. This was acceptable as long as he didn't lose any weight. His oxygen saturation level averaged around 87, which was much improved from where it was pre-surgery. Paxton had to feel better from that alone. When the pediatrician came in, Susanne was surprised to see her on crutches. She had recently run the Marine Corp. Marathon and managed to get a stress fracture to her femoral head in the process. She did end up crossing the finish line despite being injured and in pain. Way to go Dr. Lynn!

The pediatrician was beyond excited that Paxton looked so great. She commented on the fact that he looked the best she had ever remembered seeing him. This was music to Susanne's ears. The recommendations following this appointment were for Paxton to be seen by a gastroenterologist for long term management and care for his G-tube and to be seen by a neuro-ophthalmologist for an evaluation for his recent light sensitivity and to try to help rule out Moebius Syndrome. Susanne was eager to find out how often Paxton's G-tube would need to be changed out. She thought this had to be less traumatizing for him than the NG tube, but she was unsure. It was scarier for her to think about because once the G-tube was removed, the hole where it came out of opened up directly to his stomach. This alone increased his chance of infection by a lot.

Since they were heading into the winter season, Paxton was required to have a few vaccinations to try to reduce his risk of being exposed to the flu and RSV. Both were viruses that were very prevalent during the cold months. Paxton was at a higher risk of contracting a more serious form of both diseases because of his low birth weight and heart disease. Susanne was informed that he would need the Synagis vaccine once a month until April. Due to Paxton's weight, the vaccine had to be separated into two separate syringes. He ended up getting a total of three injections even though he was only getting two vaccines. All of the shots were given in the thigh muscle. They requested that Susanne stay about five to ten minutes after the vaccines were administered to monitor for any reaction. Thankfully, he seemed to handle them well.

Since Susanne and Paxton had to wait around for that extra time, they ended up running behind to their next appointment. Luckily, this appointment was at their house. Susanne had been keeping the therapist informed of the situation since the time that they arrived back in Virginia. The therapist was so kind to have pushed the appointment back by fifteen minutes to give Susanne sufficient time to get home. Once Susanne got there, she was relieved that she could finally go to the bathroom. She was surprised she had made it this long. She was thankful that it had not turned into an emergency situation where she had to use one of Paxton's diapers.

Today the therapist was going to be working on motor skills with Paxton. He was so exhausted from the crazy day that he actually fell asleep during tummy time. When they started to notice him close his eyes, they tried everything to keep him awake. No matter their efforts, Paxton was out within minutes. Susanne felt horrible that she had wasted the therapist's time, but she reassured her that it was more common than one would think. Working with infants was always a gamble because they needed much more sleep than adults. She let their internal clock dictate how much or how little they could stand to do during any given time. She had patients fall asleep on her plenty.

Once Susanne had unpacked the car, pumped, set up Paxton's next feeding, and went through the mail, she was ready for a nap herself. Knowing that she may never get back up, she opted to cook spaghetti for dinner and watch some Grey's Anatomy instead. Mind you, this was not the DVRed version of Grey's...it was real time. In saying this, by the time Susanne actually got to the point of sitting down and eating dinner it was 9:00pm. So sad!

Susanne greeted her Tempurpedic bed with open arms. She couldn't wait to catch up on old times. Now if she could just try to keep her eyes open until the last feeding of the night, she would be all good.

Supernanny

For some reason, Paxton slept until 11:00am. He must have been extra tired for some reason. Susanne was hopeful that he would have a gag free morning, but that all changed when Paxton was laid down to get his dirty diaper switched out for a new one. Luckily, he was able to hold it all down. Nothing came up other than sound.

Today, Poppy did the majority of Paxton's care. He did everything from setting up and breaking down his feedings, changing diapers, giving medications, and playing with him. A lot of the day, Poppy did everything without supervision. He had graduated to that level of care for Paxton because he was doing so well. Susanne would only intervene if he had questions. She was very proud of him for mastering everything that went along with taking care of the little guy. This was not an easy challenge to take on. It was truly a huge undertaking, but he was succeeding beautifully.

Poppy also managed to take great care of Susanne as well. It really helped her to have someone to help her with Paxton throughout the day. She was able to focus her energy on other things. Her to do list needed some trimming down. Poppy made both of them his special turkey sandwich for lunch. There wasn't much turkey left so she made sure to savor every bite.

Later in the day, Susanne worked with Paxton on sitting and head control. She was using the little piano that he loved so much to help distract him while she forced him to work. He loved hitting the piano keys and his excitement would escalate the longer he banged around. Seeing him so happy and content always put a smile on her face.

When Gigi got home, she played with Paxton on his play gym. He was really active for a while, but she could tell when he was running out of steam. He ended up taking a four hour nap because he was so exhausted from the activities of the day.

Paxton woke up for a short time at the beginning of his 9:00pm feeding. Susanne took this opportunity to work with him on accepting his pacifier. He was not feeling that whatsoever. Instead of pushing him over the edge, Susanne decided to work on something else. She tried working on motor skills like bringing his hands towards his midline. This would help to strengthen his chest muscles. Right now he still had extremely low tone for multiple reasons. The main reason was that he had two major heart operations where they had to cut into his muscles and sternum. The healing process after those surgeries was a minimum of six to eight weeks. He had also been hospitalized for much of his life where he was confined to a bed. The lack of freedom and movement didn't train his muscles to know what to do. Also, he had a severe heart condition that caused him to fatigue easily. Often, he didn't have the strength to do even the most basic, natural movements that most infants do without thinking about it. Finally, he had developmental delays that resulted in him progressing at a much slower pace than normal. Even though he was almost 11 months, he was only functioning at a four month old level. Susanne was hopeful that all of this would correct itself as he got older. She knew he would be a determined little guy. He had already proven that.

She got a lot of good laughs out of Paxton. He seemed to enjoy that time with his mommy. After about an hour, he was ready to go down for the night. Susanne was so thankful that he was so easy to read. He almost always let her know what he needed.

Extended Holiday

The day started out like most. Paxton had his morning ritual of gagging and vomiting. It happened so often now that it didn't even phase Susanne at this point.

Susanne and Poppy decided to take it easy today. They wanted to extend their holiday as much as possible. They chose to watch a movie after breakfast. Susanne had never seen any of the Harry Potter movies so Poppy thought it was the appropriate choice since he just got the DVD series for his birthday. Susanne wasn't sure if she would like it, but she was pleasantly surprised. It was creatively written and she couldn't wait to watch the next one.

Later, Susanne needed to run a couple of errands. She had been training Poppy on how to care for Paxton so she thought this would be the perfect opportunity to put his skills to the test. Even though this would be Poppy's first time to watch Paxton by himself, he gladly volunteered with no reservations. The funny thing was that Susanne wasn't even gone for more than an hour when she got a phone call. Paxton's pump that administered his feedings was running low on battery and needed to be recharged. The one problem was that Poppy couldn't find the charger. Unfortunately, Paxton's feeding could not be complete without it. Susanne got home as quickly as she could so that Paxton's schedule was not thrown off.

Paxton was really active today. He was eager to play and interact with his surroundings. He got some practice time in on his piano. He was getting quite good at producing quality tunes. He smiled a lot throughout the evening. He even smiled so much that Susanne caught him smiling in his sleep during one of his naps. It was the sweetest thing she had ever seen. When Scott got home, he walked the dogs while Susanne bathed the bug. There was nothing better than the smell of a clean baby.

Susanne was looking forward to dinner. She was going to have some of Poppy's homemade turkey soup, which was only available this time of year. He would use the leftover turkey bones to help make a tasty broth and the turkey meat that would fall off the bones would be added to the actual soup. Every year he found creative ways to use the surplus of food from Thanksgiving day. His famous turkey sandwich was always the biggest hit, but his soup was a close second. Needless to say, she knew it was going to be so delicious and soup always hit the spot.

A Great Visit with Great Friends

Poppy decided to go all out and make french toast for breakfast. It helped for Susanne and Scott to have full stomachs before they headed out for the day.

Today they were going to visit Aixa and her parents. The added bonus was that they were going to get to meet her relatively new boyfriend for the first time. Susanne had heard a lot about him, but had yet to meet him in person. Aixa and her boyfriend, Anthony, had traveled up early in the week to celebrate Thanksgiving with her parents. Her parents lived in Raleigh, NC which was where Susanne had spent eight years of her life while she was in school. It was exciting to get to visit a place that was so near and dear to her heart. The drive from Susanne's parents house to Aixa's parents house was a little over two hours. In college, this seemed like such a long drive and at times felt unbearable. Now, after living in the DC metropolitian area for the last six years it seemed like no time at all. It was actually sometimes the norm for getting from place to place. It used to take Susanne almost two hours to get home from work if she left during rush hour even though her house was less than 15 miles away. The traffic would truly be so bad at times that she would be at a standstill on I-66 for hours. She did not miss that.

Paxton did well for the ride. It was only within the last 15 minutes of the drive that he started to get overheated and upset. He also had a bowel movement right as they were pulling up. Susanne changed him in the car before they walked up to the door. They were hoping that he had cleaned out his system so they wouldn't have to change too many more dirty diapers while they were out and about. Unfortunately, they were not this lucky. He proceeded to poop two more times during the visit, both of which leaked through the side of his diaper. The first of the two episodes got on his outfit and the second one got on Scott's jeans. Susanne was mortified to find out that she was not prepared for this kind of catastrophe. She couldn't believe that she was prepared for every other kind of disaster except for this. She had brought extra feedings, extra medicine, a cooler to keep it all cold, the charger for his food pump, extra diapers, tons of wipes, burp cloths, receiving blankets, toys, and so on. However, the one thing she forgot was extra clothes. Luckily, Aixa and her parents had bought Paxton a a t-shirt and a couple of NC State bibs. Paxton had to immediately be changed into his new "One Tough Cookie" shirt. Even though it was a size 2T, it would have to suffice.

Scott and Susanne were very excited to finally meet Aixa's boyfriend. They got to know each other throughout their visit. He seemed like a perfect fit for her. It was so heartwarming to see how happy he made her.

They all spent time catching up on time that had passed. Right before dinner, Paxton looked whipped. He ended up taking a nap on Aixa's parent's bed. Scott and Susanne secured him in so that there was no chance for him to move anywhere. Dinner was an assortment of delicious Puerto Rican food. It was so nice to have something so authentic and different from their normal diet.

Before they knew it, the sun had set and it was time to leave. Time flew by too quickly, but the trip was worthwhile. It was fun to reminisce about the past and catch up with great friends. Aixa was one of those people who, no matter how much time had passed, they picked up right where they left off. She would always play an important role in their lives and they were so thankful for that.

Paxton did not enjoy the ride home at all. He cried most of the way. Susanne sat in the back to try to calm him, but nothing really worked. He was overtired and just wanted to be held. Susanne tried to distract him enough to keep him entertained. Once home, they were all relieved. Paxton could finally go night night.

Oyster Roast

This morning, Aunt Leah told Susanne to be ready by 9:00am because she would be stopping by to pick her up for a morning out. Leah had preplanned some fun activities for them to do together, but did a great job of keeping Susanne out of the loop. Scott was going to be watching Paxton so Susanne didn't have anything to worry about.

To Susanne's surprise, Leah first took her to get a pedicure. This was one of Susanne's guilty pleasures. There was no denying that she loved to be pampered. This was a perfect way to not only achieve that, but also bond with her big sister at the same time. They decided to get wild and pick off the wall colors for their toes. This made them smile.

Afterwards, Leah took Susanne shopping. Susanne rarely had time or the ability to get out of the house to do this. Susanne thoroughly enjoyed taking her time walking around and looking in different stores. The best part of the morning was that she also got to spend some leisurely time in the grocery store which she almost loved more than shopping. Food had always been a passion of hers so this was exciting for her. They finished up by going to lunch together. They had definitely worked up an appetite. Overall, it was a fabulous morning. Leah knew exactly what Susanne needed and intervened at such a perfect time.

Everyone wore their Team Paxton shirts today. It seemed like such an appropriate time to represent Team Paxon since it was a time of thanks. It was such a wonderful way to remember their roller coaster ride of a journey and how far they had come. The shirts looked great and the meaning behind them was incredible.

The holidays were all about traditions and Susanne's family had a lot of them. Growing up, the traditions that everyone looked forward to each year included a pinata, roasting marshmallows, and going to Sonic. As the years passed, they added an oyster roast to the list as a way to celebrate Poppy's birthday each year. It had been a few years since they had done a pinata since they weren't kids anymore. This year they finally felt like Parker was old enough to enjoy it so they added it back into the mix. It was so heartwarming to see his face light up as he was showered with a variety of candy when he finally broke it open. He thought it was the coolest thing. Parker also got to jump into a heap of leaves that Poppy had raked up the day before. Everyone took turns diving into the pile, which brought back fond memories of their own childhood. Once it turned dark out, the oyster roast began. The spread for tonight's dinner was just as exciting as yesterday's Thanksgiving meal. Poppy loved oysters so he could not wait to dig in. After an awesome dinner, it was time for dessert. They started with s'mores. Most everyone had spent years perfecting the art of roasting marshmallows, but now it had evolved into making the perfect s'more. Wally won the competition this year with switching out regular chocolate with Reese's peanut butter cups. Luckily, Susanne got to partake in the s'mores. She just had to use the Ghiradelli 72% cacao dark chocolate because it didn't have any dairy or soy in it. It was actually quite delicious and a nice change from the old school approach. Susanne found out that Parker had never made s'mores before. Susanne decided to take this opportunity to show him how to do it. He caught on quickly and boy did he love them. Afterwards, everyone went inside so Poppy could open his gifts. He loved his NC State Snuggie and Harry Potter Blu-Ray DVD gift set. He was an avid Harry Potter fan so he could not wait to hang out on the couch with his new blanket and watch movies all day. He had already seen them all numerous times, but they never got old to him. They celebrated some more with....yes more food. It was tradition that Poppy always got a cherry pie as his birthday cake. It was his favorite dessert by far. Once again, the evening ended with full bellies. Let the holiday overeating begin!

Happy Birthday Poppy!

Susanne decided to wake Scott up with Paxton laying next to him once again. Susanne wanted to make sure that he remembered that he had a lot of snuggle time to catch up on. It felt nice that they didn't have to wake up and rush to go anywhere today. They had made the wise decision NOT to participate in Black Friday. There was nothing that they needed that badly to leave the house.

Moppy, Susanne, and Scott were looking forward to Poppy's famous "day after Thanksgiving sandwich". This was a meal that was almost more exciting than the Thanksgiving meal itself. All three of them always looked forward to this special treat all year long.

Throughout the day, Susanne had been training Poppy on how to care for Paxton. He had shown interest since Susanne and Paxton first came down. She thought that it was such a nice gesture and it would definitely help her out in the long run.

The most important part of the day was that it was Poppy's birthday. It didn't look like he had aged a bit. For his birthday, it had been a tradition for them to have an Oyster Roast and Cherry Pie. Since Leah and her family were out of town, it had been postponed until tomorrow. Instead, they had pizza for dinner...that is everyone except Susanne. Paxton got to join in the festivities. He played in his bouncer that lit up and played music when he kicked around. He loved it. It was amazing how long everyone could just sit and watch Paxton. He was a constant source of entertainment.

The rest of the evening was filled with fun and games. It was always a nice way to end a day.

Operation Grub

Thanksgiving has always been one of Susanne's favorite holidays because it revolves around family and, of course, food. She loves when everyone can get together to spend time with each other. It reminded her of where she came from and who had been with her through all of the ups and downs of life.

Scott's idea of waking Paxton up at the 6:00am feeding and switching the side that he was laying on to see if that would help decrease the gagging episodes appeared to be working. They could only suspect that this allowed him to wake up slowly and give his brain time to process what to do with all of the saliva that had accumulated in his mouth overnight. Since he had such trouble swallowing, they were looking for any way to help prevent him from drowning or aspirating on his own spit. Scott and Susanne were able to lay their head back down for a little while longer before they had to get up for the day. Susanne decided to put Paxton in the bed next to Scott when it was time to get a move on. This was Scott's favorite way to wake up.

Susanne enjoyed cooking. She loved being in the kitchen, especially with her mother. Gigi was the reason behind Susanne's passion for food. There was a long history of cooking in the kitchen together. A lot of Susanne's fondest memories were cooking along side her mom and sisters. They had always bonded over the dinner table. She hoped to share these special moments with Paxton.

Needless to say, they spent all morning cooking. It took much longer than they had expected because of a little problem. The turkey was so huge that it took up the entire oven. There was not much room at all for any of the other dishes. They ended up having to cook some of the other items one at a time in the oven with the large bird. Some of the other dishes had to wait until the turkey was completely finished to begin their cooking process. It was times like these that Susanne wished she was back at her house in Virginia where she had a double oven. This would be the perfect set up for a large Thanksgiving spread like what they were having today.

Throughout the day, different people started showing up. Moppy arrived first. She had driven the six hour drive that Susanne was all too familiar with to be able to be with everyone for the holiday. She had brought an appetizer which was a life saver for those who were already starving to death. Susanne was more excited that Moppy had made some adjustments to her famous salad so that Susanne could eat some of it. This salad was Susanne's one request from Moppy for any holiday. She was looking forward to continuing the tradition. Aunt Leah, Uncle Wally, Parker, and Cole came shortly thereafter. They brought more food including Leah's homemade bread. Since Susanne wouldn't be able to eat that, Leah was so kind to bring a different bread that was safe for Susanne's dietary restrictions. Susanne decided to try a new mashed sweet potato recipe since she wouldn't be able to eat the traditional mashed potatoes. She was getting pretty creative with her Thanksgiving meal.

As they waited and waited and waited for everything to finish cooking, they all caught up on each other's lives. It was so good to spend time with everyone. Finally at the end of the day, the meal was ready for enjoyment. Thankfully, it was well worth the wait. They were all very happy that Paxton was actually awake for the Thanksgiving dinner. It was so special that he was there. He even dressed up for the occasion. He decided that it would be super cute to dress like his daddy. They both looked adorable.

Since they ate way too much, there was no room for dessert. This was unheard of, especially in this household, but they literally were about to pop. Dessert would just have to wait for another day.

With bellies full of food and hearts full of thanks, they had a wonderful Thanksgiving.

Happy Thanksgiving

Happy Thanksgiving to all! We have a lot to be thankful for this year. Even though we have had the roughest year of our lives, we are so grateful for what we have. Paxton's entrance into the world may have been less than perfect, but he himself is perfect. He has taught Scott and I a lot about patience, love, and the beauty that can come from tragedy. We have a miracle in our lives that reminds us daily about what is truly important in this world. Without the support and encouragement from our wonderful family and friends, we would not have made it to this point. There were times that we weren't sure that we would make it through the rough patches, but we never gave up. Even though there are a lot more challenges ahead, we are beside ourselves with joy that Paxton has made it this far. He keeps us fighting, he keeps us strong. Today, we celebrate him. We love you little guy.

Getting Back On Track

Susanne was hoping that the third time was a charm. She had not been able to get any extra sleep the past two mornings despite Scott taking over the early morning feeding. Paxton had been having issues with gagging and vomiting. Susanne quickly realized that today was no different. While Scott was taking care of James, Susanne woke up to the sound of gagging. She immediately jumped out of bed to rescue him and hopefully prevent him from tossing his cookies. He was actually able to hold it together. Scott ended up staying up with the two of them until he had to start getting ready for work. Once Paxton settled down, Susanne set Paxton up next to her in the bed to keep a close eye on him. He ended up doing well and falling asleep for an hour.

Susanne planned to continue working with Poppy on how to care for Paxton. He had been observing Susanne over the last few days and he finally felt comfortable enough to try to do some of it himself. Susanne would definitely be checking him each step of the way until they were both confident that he had mastered the skills. Susanne believed in the motto "see one, do one, teach one". She felt like this approach really helped to commit it to memory.

While Paxton napped in the afternoon, Susanne and Poppy worked on clearing out one of the bedrooms so they could transform it into Paxton's nursery. It came together nicely. They knew Paxton would love his new digs.

At one point during the day, Paxton woke up crying. Susanne wanted Poppy to try to see if he could figure out what the problem was and try to comfort him. After a few minutes, Poppy was able to settle him down and get him to fall back asleep. His experience with four daughters had paid off for sure.

Susanne and Paxton were excited that Scott had the next four days off. They couldn't wait for him to get home to get the party started. Once Scott arrived, Paxton showed off his new room. Scott was more than impressed. Scott got to play with Paxton for a short time before Susanne worked on feeding Paxton by mouth. Scott and Gigi were both very interested in watching how to do this. They also couldn't wait to see Paxton's response. Paxton did very well with tasting apples, pears, and bananas. He took about ten spoonfuls before he vomited everywhere. Susanne truly felt that the reason this happened was that the last spoonful of bananas was thicker in consistency than the other ones. Paxton was very sensitive to this and didn't quite know how to figure out what to do with the food.

Susanne cleaned up the aftermath while Scott bathed Paxton. Paxton loved bathtime and he felt much better once he was clean. By the time he was all finished, he was ready for another feeding. Scott really got to see how time flew by when they followed Paxton's regular schedule. He loved every minute and was glad that he could finally be included in their routine.

Rough Morning...Rough Night

Susanne thought that she would be able to get a little more sleep this morning since Scott was able to set up and break down Paxton's feeding without him waking up. Within thirty minutes of Scott leaving for work, the chaos began. Paxton woke up as he had over the last week by gagging. He didn't always spit up or vomit, but this time there was no mistaking it. Once the vomiting started, it didn't end. It took Susanne almost an hour to settle him down. He was crying so violently that it even woke up Poppy in the next room. Susanne did her usual routine to try to comfort him. She held him and talked to him softly. She sat him up to see if gravity would help. She tried to burp him to help release any trapped air in his stomach. She checked his diaper to make sure it was clean. She rocked him and sang sweet songs in his ear. She rubbed his back and his head to help distract him. Since she heard his stomach making noises, she decided to vent him as she had done so many times before to help relieve him. She definitely had to pull out the nasal aspirator to suction out his nose and mouth. His saliva was so thick and stringy that he almost seemed to choke on it. The scariest part during these moments was that he would turn blue. This was strictly a result of his oxygen levels being too low. He would hold his breath and pull his entire upper body backwards with a lot of force. If the person holding him was not paying attention, he could easily aspirate the fluid that was in his mouth down into his lungs or injure himself by pushing himself out of their arms. It was times like these that Susanne knew that she had made the right choice to be with Paxton full time. She didn't know anyone that she would feel comfortable handling him when he was having his vomiting episodes. It was scary enough for her and she knew what to do. She was so thankful that she was there for him and she didn't let him go until he recovered. She ended up sitting on the bathroom floor with him so that she could have enough space and access to what she needed. She remembered this floor all to well because as a child she would lay on the very same floor when she was sick. Her parents would set it up nice with blankets and pillows. If she was really sick, Poppy would even hook it up with a TV. The standard menu for her when she was not feeling well was cheese toast, sprite, and popsicles. This always made her feel much better. If only Paxton could eat by mouth, he could benefit from its magical powers.

By the time Paxton recovered, it was time to feed him again. He had finally settled down enough to close his eyes for a short time. Since he usually only had episodes like these first thing in the morning, she felt comfortable enough to feed him.

After a much needed nap, Paxton looked pretty bright and alert. Susanne decided that he looked good enough to take him into Scott's work to meet the other half of the crew. Some of the ladies in his office were dying to meet the little guy. Scott ended up having a client during half of his lunch break so Susanne spent that time getting to know everyone. Paxton was a flirt as always. He was such a ladies' man.

Everyone had to eventually get back to work so Susanne and Paxton left. Susanne had to drop off some of Scott's clothes to be dry cleaned. She was pleasantly surprised to find out that there was a drive through where she could drop off the items without having to get out of the car. This was the kind of news that mothers loved to hear. It made things a lot easier when she didn't have to disturb Paxton by taking him in and out of the car especially for quick errands like dropping something off. How genius!

Scott got home at a reasonable hour. He played with Paxton while Susanne cooked dinner. Susanne loved the feeling of being a real family again. After Paxton went off to bed, they watched a movie. They were finished in time for Scott to get a sufficient amount of sleep before work. As they were getting ready for bed, Paxton woke up upset. Scott comforted Paxton and they fell asleep in each other's arms. It was such a precious sight to see.

Milkshakes...With a Twist!

Scott and Susanne had decided to split up Paxton's feedings so that Scott could get more comfortable with Paxton's routine and help Susanne out a little. During the week, Susanne would still do the majority of the care since Scott was working throughout the day.

This morning, Scott was in the process of preparing Paxton's first feeding of the day when Susanne was woken up from a deep sleep to the sweet sound of gagging. It was programmed in her head to jump right out of bed to come to his rescue. Luckily, she caught it just in time before he spit up. When Scott returned upstairs, he was confused why Susanne was up helping when the whole point of him taking the early morning shift was so that she could get some sleep. It definitely took a lot longer to get Paxton set up because he wasn't in his normal setting and Scott was still somewhat of a "beginner" at all of this. The speed would come with time. Susanne had no doubts.

Paxton ended up falling right back asleep until his next feeding at 9:00am. Susanne played with Paxton while he dined on the bed. At the end of the feeding, he was definitely showing signs that he was tired. It was typical for him to fall back asleep midmorning for another nap. For some reason, Paxton was not thrilled with his set up in a pack-n-play. He would just stare, smile, and sometimes laugh at himself. He didn't close his eyes for even a second.

At lunchtime, Poppy decided to help Susanne surprise Aunt Leah. Leah was still under the assumption that Susanne and Paxton would be coming down on Wednesday. Poppy didn't have to teach today so he took the opportunity to use that as their way to see her. He called to tell her that he was bored and would like to bring her lunch. She totally fell for it. She had already eaten lunch so instead she got a sweet treat. Poppy called Leah when they arrived at her work. She came out the front door to find Susanne and Paxton standing there with a milkshake in hand. She was speechless. She couldn't believe that Susanne had been able to surprise her so many times in such a short time frame. Leah got to have some snuggle time with the bug and even got to take Paxton around to meet all of her co-workers that had been praying so hard for him. The time went by too quickly. Before they knew it, she had to get back to work.

Susanne, Poppy, and Paxton ran a few errands. Susanne was relieved to have an extra pair of hands. It made all of the difference in the world. While Paxton was being fed through his G-tube, Poppy carried him in his arms. The biggest thing that Susanne was able to cross off of her to do list was grocery shopping for the items that she was preparing for Thanksgiving day. She knew the earlier she could get this done, the better.

Once they got home, it was well past Paxton's naptime. He had slept some in Poppy's arms as they walked around, but nothing more than about fifteen minutes. Susanne took Paxton right up to bed and started preparing for his next feeding. The time always felt like it went by much faster when they were out of the house. Susanne noticed that even though Paxton was exhausted he wouldn't fall asleep. She watched him for at least thirty minutes smiling, laughing, and kicking around. He was having a grand old time. Susanne got tickled at how amused he was at nothing. Finally, he decided to close his eyes and rest. She was hoping he would sleep for a long time because he surely needed it.

Road Trip

Susanne was so excited for the trip today. She and the bug were going to surprise his daddy. Scott thought that they were coming down on Wednesday. She had not set an exact date in mind since Paxton was recently released from the hospital. She wanted to make sure that he was completely recovered before they traveled six hours away from his doctors and the hospital that knew him so well. Now that Paxton was close to normal, she was ready to head south. She had done something totally different this time than she had in the past. She actually tried to pack ahead of time instead of the evening before her trip. She was always so last minute and such a procrastinator with everything. She decided to try a new approach to see if she could tell the difference.

She thought that with her being so organized this time before she traveled that she would be able to leave a lot earlier to get on the road. Her goal time was 9:00am because she wanted to make it to her destination with plenty of daylight left. If there was one thing that she knew, it was that she did not like to drive at night. Unfortunately, even though she had packed as much stuff as she could in the car the day before, there was still a thousand other things she had to get done. She had to set up the cats for a few days, pack enough breast milk for the trip, prepare enough of a feeding for Paxton to last half of the trip, ransack the refrigerator and pantry for any items that she may need for the food she was making for Thanksgiving, pack his medications, shower, pump, and put together the last little odds and ends. Even though she had been up since 6:00am, she still didn't get on the road until 11:00am. What took her FIVE HOURS???? She tried not to stress about it. She tried to think positively. She thought about how much later she would have been on the road if she had not packed the other stuff in the car yesterday.

Not even thirty minutes into the drive, Paxton started to cry. He absolutely hated being in the car and even moreso his car seat. Susanne knew he would probably settle down once he exhausted himself out. Her limit for this car trip was the same as the last. If he didn't let up after five to ten minutes, then she would pull over. It still broke her heart that she couldn't do anything about his unhappiness. She tried talking to him, stroking his hair while the other hand was on the wheel, turning the radio on, singing to him, and even making silly sounds. Nothing worked. Luckily, he settled down within a reasonable amount of time. He slept for just a short time before the cycle started all over.

When she got halfway through her trip, she decided to pull off at an exit that she thought had a lot of options for food. She had only had a handful of chips, an apple, and water thus far. She was starving. Unfortunately, she must have pulled off on the wrong exit because the only places she saw were a couple of gas stations. This meant no lunch for her, but she decided to stop anyway. She needed to walk James, change Paxton, and give him a little TLC. She also had to go to the bathroom herself, but she was disgusted at the thought of putting Paxton's car seat on the floor in a gas station bathroom. She decided that she would just hold him and leave the car seat in the car. She did everything else one handed so why would this be any different? At the end of it all, it was the better choice. She was even able to wash her one free hand. This might top the chart as far as her talents went.

The pit stop went by too quickly for Paxton. She hated the thought of putting him back in the car seat because he hated it so much. If he only knew that the faster they got back on the road, the faster he would be able to get out of the car for good. She set him up with the next half of his continuous feeding for the trip and gave him the medication that was due. He slept for most of the rest of the trip. It was only when they were about forty five minutes away from the destination that he really let Susanne know what he thought about the six hour drive. If only there had been a direct flight from Virginia to North Carolina, it would have made things a lot easier.

Susanne eventually made it in one piece. She could not believe that with as many times as she had traveled this way, that it was not second nature by now. She was so thankful for her GPS. It may not take her the fastest, most direct way, but it would get her to where she needed to go even if she made a wrong turn.

Susanne called Poppy thirty minutes before she got to the house. He was an important piece to the surprise. Scott and Poppy walked Jack, Susanne's parents' dog, together everynight. He left for the walk so that Susanne would have enough time to get there and in the driveway before they returned. Susanne called Poppy once she was in position so he would know it was safe to turn around. He didn't pick up the phone, but the vibration from the call was the secret code. Once Scott got to the top of the driveway, he noticed Susanne and Paxton waiting anxiously for his arrival. He was beyond shocked. He couldn't believe that they had come three days earlier than they were supposed to. After the shock wore off, he was able to express how happy he was to have his family back together again. It just felt right.

The night ended with a movie. Scott and Susanne were out of practice with their old routine so they decided to dive right in and end the night with snuggling on the couch in front of the TV together.

One Man Show

Susanne's morning began with a serenade of gagging, followed by vomiting. The vomiting went on for upwards of an hour. Susanne could hear Paxton's stomach making some crazy noises during this time, so she decided to burp him. When this wasn't sufficient, she decided to vent him to relieve him of any gas that had built up in his stomach that could not escape. The gas was mainly from him breathing with his mouth open. As a result, he swallowed a lot of air on a daily basis causing his stomach to become bloated at times. When it became bloated, it caused a lot of discomfort and pain. The magic combination of him not feeling well and having so much air trapped in his stomach caused him to vomit. At the end of this long episode, he had a bowel movement. This plus the combination of treatments seemed to provide some relief. She was always amazed at how she could juggle so many things at once. She was an impressive one man show. After all was said and done, she was left with a large heap of dirty laundry.

This episode was scarier than most. It not only felt like it was never going to end, but Paxton turned really pale. Susanne remembered from the most recent hospital stay that when Paxton got upset, his oxygen levels would drop pretty significantly. His color didn't return back to normal for quite awhile. Even by the time of his therapy session, the therapist commented on his pale appearance. He still seemed lethargic to the two of them. Susanne had decided that if he did not perk up by the end of his appointment, she was going to take him into the pediatrician's office for an evaluation. It was times like these that she wished for a pulse oximeter to be able to measure his oxygen levels. They decided to work on motor skills instead of oral feedings due to the kind of morning he was having. He did relatively well for having such a rough start to his day. He was successful with assisted sitting and lifting his head during tummy time. He still pushed through even though he didn't have to.

Later in the evening, Cory stopped by for a visit. She brought dinner for Susanne, which was always appreciated. Susanne was so excited that Cory was actually starting to show. Her baby bump was coming out and it was super cute. After the delicious meal, Cory helped Susanne give Paxton a bath and get ready for bed. She even read him a few stories before he was ready to close his eyes. The rest of the night was spent catching up with one another. Susanne sure missed spending time with her. They were going to have to do this more often.

Susanne decided to try to get a head start on packing for her upcoming road trip to NC instead of relaxing. She was hoping her hardwork would pay off.

Head and Shoulders

Paxton slept well overnight. It was easy to tell that he was completely exhausted from his last few days in the hospital. He loved that no one was waking him up every three to four hours to take his vital signs and blood pressure. Susanne loved this as well. They were both so thrilled to be back in their own beds. There was nothing like the comfort of our own mattress, our own sheets, and especially our own pillow. It was a little slice of heaven.

Paxton played for a short time on his play gym before he was ready for his morning nap. It was a quick one because he had a therapy session scheduled before noon. Today the therapist focused on working his neck, shoulders, and arms. She agreed with Susanne that he seemed tight in this region and even appeared uncomfortable. He had been crying whenever Susanne would extend his left arm over his head. He usually loved this especially when she would show him that he was SOOOOO BIG. Unfortunately, he didn't care too much for this recently. The therapist felt lots of resistance with any kind of manipulation of the shoulders. She worked on shoulder depression, shoulder extension, shoulder retraction, and general range of motion. She felt that he also had tight muscles at the base of his neck. She taught Susanne how to do different massage techniques to loosen them up. It was amazing the improvement that had occurred by the end of the appointment. He was much more relaxed and the mobility of his arms was so much better. The therapist thought that some of this discomfort could actually be from a strained chest muscle. The location of this discomfort could just be referred pain. Since he did not have much strength in his head and neck, it affected the rest of his body negatively. Hopefully with the new techniques, he would continue to improve and feel better.

Paxton slept most of the afternoon. When he was awake, he would only play for a limited amount of time. This was his typical routine after any kind of stress inducing experience. It was times like these that Susanne made sure to follow Paxton's cues and let him dictate what he needed. Since he napped so much today, Susanne was able to catch up on multiple things that had to be put on the back burner while Paxton was in the hospital. She felt very productive.

Susanne put Paxton down for the night. It was shortly thereafter that she heard a scratch at his door. She quickly realized that Figaro had accidentally gotten shut in the nursery. He was a master of flying under the radar. He often got himself into trouble because he was so sneaky. Susanne finished up what she was working on and then went to rescue the feline in distress. When she opened the door, she could not find him. She first thought that maybe she was hearing things and he wasn't really in the room. Just as she was about to leave, she noticed a furry kitten sleeping on the changing table pad. At least he made the most of being locked away.