Fresh Food Feeder is Fabulous!

Susanne was hoping to get back in bed after the first feeding of the day to try and get some more sleep. She knew that she needed to be rested up for the drive today. She was 45 minutes into falling back asleep when Paxton woke up crying. He needed suctioning and then he was good.

Susanne got ready slowly, but surely. She always seemed to run out of time. It was the third time in a row that Susanne had a wet head during Paxton's therapy session. The doorbell always rang right as she would start blow drying her hair.

Paxton did well during therapy. Susanne started off by warming Paxton up with some facial and oral exercises. Then, she offered him a taste of an oral swab. He really seemed to enjoy exploring the swab with his tongue and suckling around it. It would release a small amount of water each time he did this. It was encouraging him to swallow without feeling threatened. This would hopefully help him to be more receptive to other items in the future. Paxton played with the selection of pacifiers that Susanne offered him. He would mainly push each one out with his tongue or lick the end of it. He would start to gag if Susanne pushed it completely in his mouth. He wasn't used to anything forcing his tongue to lay flat. It scared him immensely. Next, Susanne tried offering him a small portion of banana in his fresh food feeder. He was able to push it out through the mesh and mush it around in his mouth. He actually seemed to like it. He worked on it for well over fifteen minutes with no resistance. Since he had done so well today, they decided not to push it. They didn't offer him any other food during the session other than the banana. They allowed him to end on a positive note. Susanne was so thrilled to finally see some progress even though it wasn't substantial.

Susanne thought that it would be a good idea to leave as much stuff in Virginia as possible since she would be returning in a couple of days. She didn't feel that it was necessary to carry it all back and forth. This helped to lighten her load tremendously. It still took her quite some time to get everything packed and ready to go. She had to make multiple trips to get it all in the car. Her goal was to beat rush hour traffic. The last thing she wanted was to be stuck in a sea of non-moving vehicles for hours on end. She also wanted to beat the ice storm that was supposed to be headed in anytime now. She didn't care that it was coming to the area, she just hoped it was gone by the time she would be coming back up that way on Thursday.

The drive was not bad at all. Susanne felt awake the entire time with no episodes of dozing off. This was an improvement compared to the most recent drives. Paxton did well also. He made a few sounds along the way, but would respond to a head rub or the entertaining toy attached to his car seat.

Scott greeted them at the door. He had picked up dinner on his way home, which made Susanne extra happy that she had food waiting for her when she got there. They spent the night hanging out. They both procrastinated with going to bed because they didn't want real life to start up again. They wanted to savor every precious moment they had together.

G-Tube Out

Sadly for Susanne, Paxton didn't quite make it through the night again. As Susanne was heading off to bed around 2:30am, Paxton woke up crying. He was kind of in a daze. He wasn't exactly awake, but he definitely wasn't in a deep sleep. He was comfortable when Susanne would hold him, but the second that she would put him down, he would start crying again. It was about an hour and a half later that he finally settled down and fell back asleep.

Susanne wanted to throw her phone when its alarm went off at 6:00am. The cats helped to motivate her to get up, but their reason was self-serving. They knew that when she got up they would get fed. SNEAKY!

Paxton was bright eyed and bushy tailed for his next feeding. Susanne decided to set him up on his play gym while he ate so that she could interact with him. She let him air out while he kicked around. He really seemed to enjoy that.

He sounded congested again, so Susanne tried to suction him out. She was successful. She ended up getting up a lot of thick mucus out of the back of his throat. It was probably partially in his nasal passage, but it was accessible from the back of his mouth because of his cleft palate. He felt much better after she cleared him out.

Once Paxton's feeding was completed, Susanne bathed him. He loved bathtime. She scrubbed his fingers. She scrubbed his toes. She scrubbed his face and even his nose. Her favorite part was putting lotion on him. She liked to give him mini-massages as she moisturized his skin.

After he was squeaky clean, she did the appropriate G-tube care. It didn't seem to bother him today, which was a relief. She put him in a new outfit and he was ready to go. He looked so cute.

Susanne was excited that she would get to see her friend, Cory, today. The original plan was that she would come over to visit with Susanne and Paxton, but that changed when she informed Susanne that her husband was coming down with a cold. Susanne decided to see if Moppy could watch the bug so she could meet Cory out for some lunch instead.

This plan worked out beautifully. Susanne was even hoping to finish up some of her errands that she didn't get to finish yesterday. She got dressed and ready to go and was out the door in no time.

She met Cory at Chipotle. It was so good to see her. She was just starting out her third trimester of pregnancy. She was feeling great and looking even better. It was so nice to sit and talk for hours. It was like no time had passed at all. Spending time with Cory reminded Susanne that she missed all of her favorite friends.

At the end of lunch, Susanne got a call from Moppy. She was calling because Paxton's entire G-tube had come out with the balloon inflated and all. It had become stuck between her and the crib as she was putting him down for a nap. This was an emergency situation. If she didn't act fast, the opening in Paxton's abdomen would close up. Susanne advised Moppy to get the emergency tubing to place into the stoma and to not move until Susanne could get to them. Her errands would have to be postponed again. She guessed she wasn't destined to get them done.

When Susanne got home, she went into high gear. She gathered everything that she would need to replace his MIC-KEY button. The first two attempts were unsuccessful. She didn't want to push too hard because of the concern of more trauma to the site. It was difficult to know whether to keep trying or not especially because Paxton was so upset. Finally, she got it in. The third time was a charm. Once it was in, she inflated the balloon to keep it in place. Then, she checked placement. She aspirated back the contents from his stomach so she knew it was in the correct location. The only concern now was whether or not there had been damage done to the granulation tissue that had developed over the last four months. Susanne knew that this was a serious situation. She contacted Paxton's pediatrician to discuss whether or not they still needed to go the emergency room. The one other time this happened, they absolutely had to go to the hospital. If the problem was not addressed within a sufficient amount of time, then the hole that gave access to his stomach would close up. The pediatrician told Susanne that if it were any other parent, she would recommend that they go straight to the hospital. Since she felt confident in Susanne's knowledge and assessment of the situation, she told her to just monitor him closely. If there was any sign of a problem, then she should go straight to the ER without a doubt. Susanne was comfortable with this advice and appreciated that the doctor trusted her so much. Susanne was informed to hold off on any continuous feedings until she knew he could handle bolus feedings without any complications.

Paxton was exhausted after that whole ordeal. He went right down for a nap. Susanne went outside to finish shoveling the sidewalk and driveway. She wanted to clear it all out before the next potential snowstorm that was predicted to happen this week. She was hoping round three of shoveling would take care of it all. Her shoulders were sore and she was running low on energy.

Susanne finshed up some other household chores while Paxton slept away. She was hoping that he slept through the night tonight since they had a six hour drive ahead of them tomorrow.

It's So Hard to Leave

Susanne was up with Paxton at 3:00am, 6:00am, and 8:00am. This was difficult, especially since she didn't get to bed until after 1:00am because of his last feeding. He woke up crying each time and would settle shortly after Susanne comforted him. She hated seeing him upset. It appeared that he must have been refluxing because he didn't gag or sound congested. At one point, Susanne snuggled next to Paxton in her bed. This allowed for him to feel safe and know that she was close by. At the same time, she could rest her eyes some more.

Susanne couldn't go back to bed once he was up at 8:00am because the nurse was coming by today around 9:00am to watch Paxton. Susanne was hoping to run some much needed errands. Once the nurse arrived, Susanne watched her set up the next feeding and give Paxton his medications. She was still forgetting small steps. These small steps were important because any mistake in Paxton's world was a big deal. Susanne was having trouble leaving the house because she wanted to make sure that he was squared away and that the nurse didn't have any questions. It was surprising to her how difficult it was to walk out the front door. She tried to not let her worry and concern take over.

Susanne's car was still stuck in the ice and snow in the driveway. She spent some time trying to shovel the debris from under all four tires. She didn't get very far because it was pure ice that was strongly adhered to the asphalt. She attempted multiple times to back out, but her tires would just spin in place. Out of nowhere, a car pulled up. A gentleman got out to see if Susanne wanted him to shovel her driveway. She turned down the offer, but asked him to assess which tire was causing the problem. He helped her remove as much out from under each wheel as he possibly could. When that still didn't work, he recommended that he push the car backwards as Susanne reversed. This was successful. Thank you to the good samaritan, Susanne was on her way.

Susanne's first stop was to get gas. Her gas light had turned on as she rolled up to the house on Thursday. After filling up her tank, she then decided to go ahead and get her oil changed as well as her car inspected. Both places were hopping. She had to wait at least thirty minutes each time before she moved to the front of the line. It had to be done, it was just unpleasant waiting that long.

Once finished, Susanne moved on to the next place. She needed to stop by Babies-R-Us because she needed to purchase a few things like a new bottle brush and something that would keep Paxton's bottles cold as well as have the ability to warm them up when he was ready to eat. One of the main reasons she stopped here was to get Paxton some new clothes. He had managed to outgrow almost all of his current outfits. It was his accelerated increase in height that was causing the issue. Unfortunately, Susanne's hunt was unsuccessful. She had to be picky with her selections because of Paxton's G-tube. Most outfits were not G-tube friendly. She was hoping to have better luck somewhere else.

She was only able to make it to Petsmart and the grocery store before she had to head home. The nurse was available until 3:00pm. Susanne was running behind because everywhere she went was packed. She called the nurse to give her an update on her whereabouts. The nurse was very understanding and told her to take her time. She ended up making it back to the house within fifteen minutes of when she was supposed to be there.

Paxton did well while Susanne was gone. He had difficulty falling asleep for his nap, but he didn't cry once. He was very active and playful. He smiled and laughed a lot. The nurse read him a couple of books and played him a CD of silly songs. She switched up where and what he played with over the few hours that Susanne was gone. He enjoyed showing off and flirting.

Julie decided to stop by a little later to visit with Susanne. She was so kind to help Susanne finish shoveling out the driveway. She always took the initiative to make sure Susanne was well taken care of. She knew that Susanne was sore from shoveling a couple days before and she refused to let her do anymore.

Once she had made a major dent in the snow, they went inside to get warm. Julie got to peek in on Paxton as he slept contently. He never woke up throughout the whole visit. Susanne and Julie took this opportunity to catch up. It was so nice to just relax with a good friend. It was amazing how their stress level improved with just being able to lean on each other and use each other for support. It was helpful that there were so many parallels between their current situations because it made it that much easier to understand each other.

Susanne was shocked that Paxton continued to sleep well into the evening. He never woke up after being put down mid afternoon. She was hoping that he would catch up on some much needed sleep. She knew he had to be exhausted. She would just have to wait and see if he could make it all the way through the night without stirring. She would keep her fingers crossed.

Nurse In Training

Susanne was so exhausted from the day that she had accidentally fallen asleep right before Paxton was due for his midnight feeding. Luckily, her body naturally woke up around 3:00am so she was able to make up for the missed feeding at that time. She had no problem shutting her eyes again while waiting for it to finish an hour later.

Paxton slept right through the night until 6:00am. Susanne wasn't sure if it was due to her skills as a mom or if he was just so completely exhausted from the craziness of the day yesterday that he did so well despite the congestion. He still did not have a crusty nose or any nasal discharge. He didn't have any evidence of conjunctivitis and his lungs still sounded clear. He didn't appear to have a cold yet, which was Susanne's goal. His main problem was that he would build up thick secretions in the back of his mouth that he couldn't clear. It was worse in the morning and at night. During the day, he handled it better.

Susanne took the same measures that she did yesterday evening except repeating the bath. Instead, she had Paxton sit in his bouncer in the bathroom while she took a hot, steamy shower. She was hoping that the steam would help clear him up. She still had to hold him upright for a while. He eventually went down for his early mid-morning nap.

Paxton slept right up until his therapy appointment. He woke up relatively easily when Susanne picked him up out of his crib. He was surprisingly quite happy for being woken up out of a deep sleep. The therapist took time doing some oral motor stretches, gum massage, and cheek stretches. Susanne made sure to show the therapist Paxton's two new lower incisors that were coming in. He was most likely going to have four lower incisors before any of his upper incisors came in. Susanne worked with three different pacifiers to show the therapist how he was handling them. Paxton would explore them with his tongue, but not ever close his mouth around them. He was reluctant to extend his tongue forward underneath the pacifier because of the fear of gagging. They were working on training his tongue to flatten and lay down. Susanne was worried about offering solid food today because of his recent congestion. She was certain he would gag and vomit with the addition of more substances in his mouth. He proved her wrong. He tolerated at least ten spoonfuls of pureed apples. He gagged twice, but recovered quickly on his own without needing to be picked up. He never got to the point that he spit up or vomited. He was actually making what appeared to be a chewing motion. He was bringing his lower jaw up to his upper jaw. He was able to close his lips together. He was moving his tongue well and swallowing more frequently than he ever had. All were great signs of improvement. It was a great feeding session. Hopefully, this wouldn't be a one time event.

As the session was finishing up, the doorbell rang. The nurse that was going to be occasionally watching Paxton came by to learn the ins and outs of watching him. She was a LPN who had worked in a nursing home for years. She had just recently started doing home healthcare. She had cared for a variety of age groups. Susanne went through every detail of his care. Susanne had a spreadsheet with his daily schedule on it. They discussed the important signs for the nurse to look out for to know if he was in distress. She made sure to tell her what to do if he turned blue, had a gagging episode, became overheated, if his respiration rate was extremely elevated, if his G-tube came out, if he needed suctioning, and the proper way to hold him.

Paxton loved looking at new faces. He was staring and smiling at the nurse the entire time. During playtime, Susanne was able to pump while the nurse watched the little guy. She did a good job with him, but she had a lot to learn. Paxton required a lot of special care and close monitoring. Paying attention to the little details was key. She was coming back tomorrow, which made Susanne feel more comfortable about getting more of a chance to watch her go through his routine.

After a few hours of teaching, the nurse headed home. Susanne could finally sit down to eat something. She was getting tired of having days that were filled to the brim with things to do. She just wanted more peace and quiet in her life. She knew this was unrealistic, but she made sure to at least make it a possibility this afternoon.

Susanne made a few phone calls related to Paxton's bills and insurance plan. She was frustrated that she kept getting different information depending on who she talked to. The solution on most days was to make more phone calls and talk to more people to try to figure things out.

Paxton woke up from his afternoon nap struggling to clear his mouth of all of the accumulated secretions. It took another hour before he fully recovered. Susanne was starting to get a routine down with how to treat his congestion. She just prayed that it would resolve within a few days. It definitely needed to be cleared up before the trip to Boston.

It's Cold, but It's Not a Cold

Paxton had a rough night last night. He woke up a couple of times sounding congested. Scott and Susanne could tell that he needed to clear his nose and throat, but he just didn't know how. Since he couldn't swallow, it complicated things. Thankfully, Scott was available to tend to Paxton when he woke up crying when Susanne was in the shower. It was such a relief to her to have a second pair of hands for once.

Scott ended up having to comfort Paxton into the wee hours of the morning. He was having difficulty breathing since he had an excessive accumulation of saliva and mucus present. Scott and Susanne didn't think he had a cold, but they did think his body was trying to fight off all of the germs he had been exposed to within the last week. Scott had just recovered from the flu and Gigi was currently recovering from a head cold. Hopefully, Paxton would be strong enough to avoid getting sick.

Susanne managed to get in bed a little past 1:00am. She needed all of the sleep she could get because she had to get on the road before 8:00am in order to make it ro Virginia in time to Paxton's appointmens. Her alarm went off sooner than she would have liked. It almost felt like the moment she closed her eyes, it was time to open them again. She needed at least two hours to get everything ready to go. She waited to wake up Paxton until the very last minute possible. She knew that he didn't get a lot of sleep last night so she hesitated to wake him up sooner than she needed to. When she had no choice, she was prepared for a rough awakening and boy was she right. He woke up gagging and vomiting. He still sounded like he had a lot in his throat that needed to be cleared. Susanne had mistakenly forgotten his nasal aspirator back in Virginia. She would never make that mistake again.

Susanne got in the car in the nick of time. She would be pushing it to make it to the house in Virginia by 2:00pm. During the first ten minutes of the drive, Paxton would gag on and off. He occasionally sneezed and even vomited up his stomach contents a couple of times. She was able to wipe his face and clear his mouth out at every stop sign on the way out of the neighborhood. He eventually seemed to settle down and Susanne didn't have to pull over. Susanne struggled to keep her eyes open especially during the first two hours of the drive. It wasn't until she talked to Moppy for about an hour that she felt more awake. Later in the drive, she talked to Scott. It helped to have something that stimulated her brain because the drive itself was so mundane. During the remainder of the drive, she listened to the Harry Potter book on CD that she had started on a previous drive. It helped to keep her focused on something other than how much longer she had to go.

Paxton got upset one more time during the trip. It was all related to his congestion and not the typical problem of him being overheated. Susanne had figured out the solution to that problem a while ago. She would still line the back of his car seat with freezer packs for the drive. So far, that worked well.

Susanne arrived home with fifteen minutes to spare. This was just enough time to get Paxton in the house and changed before his therapy session. Susanne decided to leave everything in the car until after his second appointment due to the lack of time. She would also have to postpone pumping for the same reason.

Therapy went well today. Paxton was very active in the beginning, but eventually lost steam as the session came to an end. He was very talkative and laughed a lot when the therapist first interacted with him. Paxton learned a new trick on his side today. He was allowed to play in the side lying position, but he was required to put weight through the arm that was touching the wedge. It was a total GQ pose. He had a short burst of energy on his back when she was working on range of motion of his legs. He sat with good head control for several minutes multiple times. He still required moderate support to his trunk, but that wasn't surprising. He did well during tummy time and he held his head up without prompting on several occasions. He kept trying to pull his hands to his mouth and rest his face on them. The therapist had to continue to correct his positioning. She didn't want him to become a Lazy Bones Jones. Susanne demonstrated the ball exercises that she had been working on with Paxton. This was when Paxton decided it was nap time. He could no longer keep his eyes open no matter how hard he tried. He was out for the count.

Unfortunately for Paxton, he wasn't going to be able to take an official nap. He had another appointment that was scheduled right after his therapy session. Susanne had just enough time to put him in his car seat and grab her purse before it was time to leave.

Paxton weighed 17lbs 12oz and measured 28.75 inches in height. Susanne was told that even though his car seat was supposed to go up to 22lbs, she would probably need to get a convertible car seat soon. Paxton's height was at the high end of the range for what the car seat would hold. This came as a surprise to them both. The pediatrician did inform her that Paxton had managed to slowly move up from the less than 5% group to the 25% group for his height. His weight was still hanging below the 5% line, but she thought he hid it well. The appointment started with the nurse giving him his Hepatitis B vaccine and his next Synagis vaccine. Once again, even though he was getting only two vaccinations, he had to get three separate injections. He didn't cry for the first two, but the third one brought tears to his eyes. This always made Susanne so sad. Susanne updated the pediatrician about the upcoming cleft palate repair scheduled for 02-15-11. She was pleased with the assessments from the cardiologist and the neuro-ophthalmologist. She was eagerly awaiting what the gastroenterologist was going to say about the requirements for the long term care of Paxton's G tube, but she would have to be patient because Susanne was having trouble getting an appointment with them. Susanne asked her about Paxton's recent congestion. The doctor did not think he had a cold. She thought his lungs sounded clear and the upper respiratory sounds went away after suctioned out with the nasal aspirator. Their last topic of discussion was his feedings. She helped Susanne figure out a way for her to feed him five bolus feedings during the day, but then set him up on a continuous feeding from 11:00pm - 7:00am. She was reluctant to switch anything regarding his feedings. She felt like everytime she adjusted something, he responded negatively and in turn got ill. Susanne was going to have to make this transition very, very slowly.

By the time Susanne got out of there, it was already 5:00pm. The appointment lasted an hour and a half. This was typical for his routine visits so it was not surprising. They always had so much to discuss including all of the updates that had occurred since the previous visit. Susanne was just so thankful that Dr. Lynn was so dedicated to her and Paxton.

Susanne immediately started shoveling snow out of the driveway when she got home. She was trying to beat the sun going down. Her goal was to be able to get into the garage so that she wouldn't risk slipping in the snow with Paxton in tow and to make unloading the car a lot easier. She quickly realized that it was going to take a lot longer than she thought. It had snowed eight inches yesterday. Susanne knew it wouldn't be an easy task. She managed to shovel the first quarter of the driveway before she needed to get Paxton inside for his next feeding. He had been sitting in the heated car while Susanne worked up a sweat. She decided to try to drive the car into the driveway up to the garage. She thought with the path that she had already cleared plus a little momentum, she could get to the garage. SHE WAS WRONG! She got stuck. She could not reverse or drive forward, even with shoveling the snow away that had accumulated around the tires. She eventually threw in the towel and called it quits until tomorrow. She carried Paxton in and got him situated first. Once he was eating and settled, she started to unload the car. It took her EIGHT trips back and forth through the deep snow before she was finished. The most frustrating part was that once it was all inside, she was nowhere close to being able to sit down and relax. She took care of the cats next. Moppy had been unable to get out to the house to scoop litter and refill their bowls because of the snow storm. They still had a little bit of food, but their litter boxes were out of control. She was surprised they were still using them and not going elsewhere. She started a load of laundry and pumped. She talked to her sister, Kerry, about two of her sick dogs.

Just as they were getting off the phone, Paxton woke up crying. He sounded congested again. He was trying to cough up the excess saliva and thick mucus that was trapped in the back of his throat. He had difficulty swallowing it. His cough sounded harsh. Susanne could tell that his throat was dry. She tried everything to help make him feel better. She suctioned out his nose and mouth. She applied Little Noses saline drops to help open up his nasal passages. She offered him a wet oral swab to help moisten his mouth. She even gave him a bath in hopes that it would be calming. The one thing that was missing was a humidifier. She had brought it with her to NC thinking that she would need it down there during the winter months. She had not been taking it back and forth with her. Now, when she really needed it, she didn't have it. Finally, she calmed him down. She snuggled with him for over an hour. She held him closely and rocked him sweetly. He eventually fell asleep.

Finally, she got to eat her dinner that was delivered two hours prior. She had an empty fridge, so this was her only choice if she didn't want an empty stomach. She had been so excited about her meal, but she just had not found a free moment to sit down to eat it. Now she was stuck with a cold dinner. It was all in the name of love.

Bamboo Mentality

In ancient China, people identified with Bamboo as the very symbol of Chinese character. Bamboo stands for elasticity, endurance and perseverance. Bamboo is beautiful, strong, yet pliable. The stem bends in the wind but does not break. The leaves are moved by the wind but do not fall. After the American atomic bomb was dropped on Hiroshima, Japan, bamboo was one of the first plants to emerge from the soil and turn green again. It is a survivor.

It is natural to picture an oak tree when thinking of strength and endurance. After a storm, however, the branches of an oak are cracked and broken and its leaves are strewn about. The bamboo tree survives monsoons by being flexible. It bends with the storms of life so that when the storm is over it can continue to stretch upward, stem intact and leaves accounted for.

Life sometimes feels like a series of windy days. Other times it feels as though an atomic bomb has been dropped on you. Responding to life’s storms and explosions requires patience and planning in order to survive with the least amount of cracks and breaks. Having a “bamboo mentality” means yielding when appropriate and advancing when possible. Bamboo mentality refers to your ability to reach compromise, sometimes giving in, but ultimately emerging from your troubles unbroken.

Rough Start to a Good Day!

Susanne was so thankful that Scott was feeling better. It made such a difference to her that he took over the 6:00am feedings again. A couple extra hours of sleep made a world of difference.

Paxton started off his day playing on his play gym while he finished his 9:00am feeding. He actively kicked around and batted at the hanging toys. He got so excited when his aim was accurate.

Paxton was very sensitive about his positioning at all times. He had such a weak core that when he was in a supported sitting position, he would tend to slump and regress relatively quickly. If he was laid on his back, his reflux would act up which usually lead to gagging followed by vomiting or spitting up. Even with an elevated pillow to support his head and neck, he was sensitive to being placed on his back. If he was positioned on his stomach for tummy time, his G-tube would be compressed and occasionally provide discomfort. Also, if he just finished eating, this position would trigger vomiting because of the pressure on his full belly. The biggest concern was that he didn't have a lot of head control. Without proper support and supervision, his face would be planted directly into his boppy pillow. This increased his chances for suffocation. Paxton did best on his sides or upright over the shoulder. They each had their own pros and cons, but they still appeared to be the most comfortable way for him to be positioned.

Later in the morning, Paxton sat with Poppy in his special spot in the breakfast area that attracted the sun. They enjoyed soaking up its warm rays. A little Vitamin D never hurt anybody.

As Paxton's midday feeding finished, he woke up gagging and vomiting. It was always scary to witness this because of the concern of aspiration. Susanne whisked him up right away to try to prevent this from happening. After getting him settled, Susanne placed him in his lamb seat while she went to the bathroom. She no sooner sat down before he started crying. Luckily, Poppy was close by and was able to console him. He had spit up again for some reason. His stomach must have been upset because for the next hour he was very easily disturbed by the slightest movement. Susanne couldn't get him comfortable for the longest time. She tried every position under the sun. Finally, she found the money spot. He calmed down and recovered from the traumatic last hour. Susanne could tell that he was overtired at this point. He was fighting falling asleep, but he eventually shut his precious eyes. Susanne hoped that he would sleep for a long time. He definitely needed it.

Gigi played with Paxton when she got home. She encouraged him to kick his piano to cause the lights and music to turn on. He always seemed so impressed with himself. It was neat to see him make the connection that he was causing the toy to activate. Gigi worked with Paxton on exploring different teething toys with his tongue. He seemed to love the feel of the toy rub against his gums. He allowed one of the toys to go beyond his gums. He still didn't quite understand how to get his tongue underneath them to form a seal and suckle. He couldn't even figure out how to munch and chew on the toys, but it was fun to watch him touch them with the tip of his tongue. Hopefully, the other skills would develop over time.

Paxton sure laughed a lot this evening. This made Susanne feel better since he had a little bit of a rough day. Once Scott got home, he took over with some of the playtime. Paxton ran out of steam quickly. Before they knew it, Paxton was ready for bed. Scott spent some time cuddling with the little man. Once he was dozing off, he placed him in his crib. He made sure he was snug as a bug in a rug and gave him kisses goodnight.

Scott and Susanne discussed the happenings of their day over dinner. It was nice to just sit with each other and talk. It felt like the old days again.

Amazing

Paxton couldn't get through his 6:00am feeding without gagging. Susanne sat up with him because she was still doing all of Paxton's care. After today, she was going to recruit Scott back to the team. Scott's sickness had definitely taken a toll on her over the last few days.

Paxton had trouble going back down for his morning nap. Susanne took this opportunity to play with him and work on some of his motor skills. He seemed very sensitive to a lot of movement so she had to take it easy.

Later in the day, Susanne decided to offer him different pacifiers. He was more receptive to them than he had been in a long time. He would allow Susanne to place one completely in his mouth, but he would immediately push it out with his tongue. He liked to explore the tip of the pacifier with his tongue, but he would not suckle around it. It was almost as if his tongue resisted laying flat. If it ever did, it was sure to cause a gag response.

Since he did so well with the pacifiers, Susanne tried to offer Paxton some food by mouth. She started with blueberries today, which was different than how they usually began. She was only two spoonfuls in before he started dry heaving. He got to a point of no return. All of his stomach contents came up and sprayed everywhere. He proceeded to empty his stomach until nothing came out. He really struggled with the oral feedings today.

Paxton was such a poop machine all day. He pooped at least once with every feeding, but sometimes twice. This was more common when he was on straight breast milk, but not so much recently. Susanne was starting to think he was doing it on purpose so that he could be naked. He loved being on the changing table free as a bird. It was a sure fire way to get him to smile and laugh. It didn't matter if he was wailing the moment before, once his diaper was off he was one happy dude.

Paxton laughed a lot this afternoon. He played with his moose for a while and entertained himself by batting at him. Susanne loved how easily she could make him smile these days. Just the sound of her voice or her laugh got him going. He was also making different sounds with his mouth. His favorite one at this time was the "m" sound. Susanne swore that it sounded like he was saying "mama" at times.

For dinner, Susanne decided to try to get creative and make chilaquiles. This was one of Scott and Susanne's favorite dishes from one of their vacations to Mexico, but Susanne had never been brave enough to try making it. It was fun to make, especially the roasted salsa verde. Thankfully, it turned out well. It was a big hit with the fam.

Once everyone was home and settled, they sat down to watch the weekly episode of "The Bachelor". Susanne and Gigi had fun making a drinking game out of the show. Anytime someone said the word "amazing" they had to take a drink. Tonight the word was said at an all time high. Susanne and Gigi were feeling pretty "AMAZING" by the end of the show.

You Gotta Bounce

Scott and Susanne were feeling the effects of the craziness that they called life. They were constantly presented with challenges that were a result of Paxton's medical issues. They had learned to manage their new "normal", but at times it was still overwhelming. It was difficult for them to always put on a smiling face and just deal with the hand they were dealt. Putting on a show for others was sometimes exhausting. Everyone always wanted to hear them say that they were ok because they didn't know how to react to any other answer. Just like in the movie "Bounce", people want you to just bounce back from traumatic events. They want you to live knowing that it will eventually get better. They are uncomfortable with just letting you feel your true feelings. They want you to bounce back from the sadness, bounce back from the trauma, bounce back from the life changing event that occurred, not realizing that it's not that easy. What you've been through has changed you forever. Things are no longer the same as they were before. It would be more accurate to say that it felt like you were bouncing. Gwyneth Paltrow's character couldn't have said it better, "So that's what I've been doing all this time...bouncing. It's like crashing except you get to do it over and over again."

Scott and Susanne felt blessed to have Paxton in their lives, but they hated that he hadn't scratched the surface of what he would face in life. Scott was taken aback to see how little progress Paxton had made over the last few months. His overall strength and development was still around a four-month-old level. He had some head control, but no core strength. He wasn't anywhere near being able to sit up on his own. It appeared that they were currently in a rut. Luckily, Susanne had some new skills to work on with Paxton. She took some time showing Scott some of these techniques. They were hopeful that he would turn the corner sometime soon. It just made it difficult with Susanne traveling back and forth as well as Paxton having another surgery coming up. Unfortunately, 2011 had not yet been as boring as they had hoped it would be.

Destruct and Disinfect

Scott slept until noon today. He didn't even budge when Susanne went in and out of the room to get the milk and medications she needed for Paxton. Susanne thought that it was important for him to rest up as much as possible to aid in the healing process. Once he was stirring around, Susanne brought him breakfast in bed, even though it was technically lunchtime. He loved waking up to the smell of a warm meal.

While Scott was sleeping, Paxton and Susanne spent time playing. Susanne forced him to work as well, but she liked to cover it up by making it seem like fun. Also, she got to talk to Aunt Leenie over the phone. Since they no longer had weekly pajama parties, Susanne often felt out of the loop with the latest and greatest happenings in the Neumann's lives. It was nice to catch up and hear her voice.

Scott had not fully recovered, but he was feeling much better. They decided to take it easy today and not push it too much. Scott went out for a short bit to get his haircut and brought home some lunch for them. Once Paxton went down for his afternoon nap, they decided to watch a movie. Scott made some homemade cherry limeade to drink and popped some popcorn as their tasty treat. They had not had any time together for as long as they could remember. It was nice to finally take a break from life and hang out.

They finished out the day by doing some of their weekly chores. Of utmost importance was destructing and disinfecting the room Scott was staying in so that Susanne could safely rejoin him at night. It had been weird for them to sleep in separate rooms. It had even been just as weird for them to sit on separate couches over the last few days. They had to try extremely hard to not show affection to each other out of concern for spreading germs. This was all for the sake of Paxton.

Gigi and Poppy joined them at night for another movie. They all enjoyed some dinner as they vegged out on the couch.

Fountain of Youth

Susanne was struggling this morning. She had completely taken over Paxton's schedule the last two days because Scott was sick and she was feeling it. Scott had been running a fever, aching, coughing, and feeling congested for a little over 48 hours. Susanne took as many precautions as possible to try to avoid getting sick. She was trying even harder to avoid Paxton getting sick. She wanted to limit their exposure as much as possible. Susanne had managed to protect both of them from getting the common cold or flu for almost a year now. She didn't want to tarnish her record especially since Paxton was so close to turning one. Susanne had decided early on that Scott should not partake in any of Paxton's care until he was 100% better. She didn't even want him to hold him or be in the same room with him. Susanne chose to sleep in a separate room for the past couple of nights to minimize her exposure. She knew there was no way to protect herself completely, but she would do her best. She was hoping that her exposure would be just enough to mount an immune response against it. She would then be able to pass on her warrior antibodies to Paxton through her breast milk. This sounded good in theory, now to see if it worked.

Susanne wasn't used to much sleep as it was, but to go back to getting a max of three hours per night was torturous. The only thing keeping her going was the smile on Paxton's face. They spent the morning playing with a variety of his toys. Susanne worked on his head control and posture. She was hoping that all the time and efforts that she put in everyday working with Paxton would eventually pay off. Even though she couldn't see any major improvements, she had to hope that his muscles were getting stronger each time.

Susanne thought that it would be a good idea to let Paxton air dry for a little bit to aid in the healing process of his diaper rash. It was looking much better, but not completely resolved. Everytime she thought she could predict when Paxton would urinate next, she was caught off guard by getting sprayed. She always protected the area he was laying in and around by placing absorbent pads everywhere. It never failed that his aim was anything, but accurate. He managed to pee anywhere, but on the appropriate surface. Throughout the course of the day, he soaked Susanne's pants, the bedspread, the top of his diaper, his leg, and his receiving blanket. Susanne should have learned her lesson, but she made the same mistake after his bath. While putting on his lotion, she was startled by the warm feeling of liquid on her arm. What was she going to do with him?

Susanne thought that it would be nice to sit outside with Paxton. The weather had warmed up a little bit and was quite pleasant if sitting in the sun. Susanne had spent some time perfectly placing Paxton in her Moby Wrap. This was a wide piece of fabric that could be used to carry the weight of a child and secure them close to mom's body so that she could be hands free to do other things. She thought that this would be the perfect set up to soak up rays. No sooner than Susanne sat down, Paxton started gagging and vomiting all over the place. Of course, she did not come prepared. She did not have a burp cloth or receiving blanket. She didn't even have a tissue or paper towel. He covered the Moby Wrap, his outfit, and Susanne's outfit with his latest feeding. Their outside adventure was short and not so sweet. So much for trying to add some variety into his day.

Susanne spent the next hour bathing Paxton, doing laundry, and getting him set up for his next feeding. She was amazed at the mess that had accumulated in such a short time. She had her work cut out for herself. There was never a dull moment in her life.

Sniffling, Sneezing, Coughing, Aching, Stuffy Head, Fever So You Can Rest Medicine

Scott was definitely sick as a dog. Susanne had taken his temperature yesterday evening and it had reached 102 degrees by the time he got home from work. She went into mommy mode and encouraged him to take a shower and get in bed. She brought him multiple bottles of water along with hot chicken soup, crackers, and cheese toast. After he ate, she loaded him up with the sniffling, sneezing, coughing, aching, stuffy head, fever so you can rest medicine. He went right to sleep and actually got more than 10 hours of consecutive shut eye. That had to feel good.

Susanne had taken over Paxton's complete schedule to avoid Scott coming into contact with him. It would not be good if Paxton contracted the funk. Susanne also elected to sleep in a separate room for the first time since they had been married. This would be tough, but for the best.

Scott still managed to get up and go to work. This was the unfortunate part about today's society. There was this undue pressure to still push through and work even if someone was on their death bed. It was more highly looked upon to show up to work then to take a sick day...even if that meant infecting the rest of the co-workers. That's pretty twisted.

Susanne was supposed to appear in court today to dispute her speeding ticket she got a couple of months ago. Thankfully, she didn't have to go because it was already taken care of. She had called the court last week to ask if she would be able to bring Paxton into the court room. She wouldn't have anyone to watch him and he would be in the middle of a G-tube feeding. The judge was very understanding and helped to solve the problem. He decided to discuss her case over the phone so this would not be an issue. He offered to reduce her ticket to a non-moving violation, but she would still be responsible for paying it in full. The positive side to it all was that she would not get any points on her license and she would not have to drive three hours to be in court by 9:00am. The negative side was that she still got her first speeding ticket. She made sure to let the judge know that she had never had a speeding ticket in her life. Also, she informed him that over the last few weeks when she had been driving back and forth from NC to VA the speed limit in the area she got pulled over in was actually 70mph. Her ticket appeared to be incorrect because it stated that she had been clocked going 75mph in a 65mph zone. He said that the speed limit had changed to 70mph the week after she got the ticket. Prior to that, it had truly been 65mph. She requested a prayer for judgment, but this did not exist in the state of VA. She decided rules were rules. She payed the ticket over the phone and called it a day. She appreciated his generosity and flexibility. She would have to make sure this never happened again.

Susanne and Paxton enjoyed spending the day together that didn't include the courtroom. They followed their same old routine like they had on most days. It was nice to not have to think about traveling for once. Susanne hoped to relax a little bit that day, that is, if she could find the time.

That's Pretty Funny

The highlight of today was the joy of Paxton's laugh. He had appeared to be so happy over the last few days. He would laugh at the drop of a hat. It didn't matter if it was in response to Susanne laughing, Gigi making funny noises, or just the lightest touch. He would get so tickled that he had difficulty making any sound at times. It was the sweetest thing and such a hoot to listen to him chuckle. What a great day!

Round and Round We Go

Today, Susanne had a moment of weakness. She was feeling down on herself. Life had become a big pile of disappointment. Susanne and Scott were feeling like no matter how hard they worked, it wasn't hard enough. No matter how much money they made, they couldn't make ends meet. No matter how much they wanted to spend time together, there was always something standing in their way. Most importantly, no matter how much they wanted Paxton to be a healthy child, he was always going to battle with his ongoing medical issues. It made them deeply sad to think that he was going to have to fight to survive everyday for the rest of his life...however long that may be. Susanne was starting to question what was the greater purpose of it all. Why was life so difficult? She had always felt so blessed with such an awesome, supportive family. She had always surrounded herself with wonderful friends. She never really had many tragedies in her life, but now that felt like all that she experienced. Life used to be such a bright spot. She was always excited to see where the next road was going to take her. Now she lived in the moment, fearing the journey ahead. It just didn't feel like her situation was getting any better. Granted she had a lot to be thankful for, she still felt like there was no end in sight. It was almost as if she was stuck in a hamster wheel. She was constantly running round and round, but getting nowhere. She was working hard, expending a lot of energy, but not seeing that it was making a difference. Her faith in God was the only thing that made her push through everyday. It was the only glimmer of hope she had for the future. She believed that he had a greater plan in place for them that they just couldn't see at this moment in time. She was hoping she was right.

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.