Susanne's birthday started early because Paxton woke up around 3:00 am very unhappy. She had a hard time getting him comfortable so she had to wake up Scott to see if he could do any better. Apparently, sometimes Paxton just needed Daddy's touch. Both nights Paxton had to sleep in the hotel, he did not seem to adjust well. It was hard to figure out why. He did end up developing a rash on one of his ears after the first night he stayed there, but he only slept on things that were brought from home.
The morning came too soon for everyone. They all had to be back at the hospital for an eight o'clock appointment with the two geneticists that had been the head of Paxton's case so they could discuss a plan for after returning home. Susanne and Scott decided at the last minute to come back to the hotel after the appointment to pack up the car. If they had tried to do it beforehand, there was no way they would have made it on time, especially because it would be rush hour when they left.
Once they arrived at the hospital, Paxton wanted to make things interesting by having two dirty diapers right before his appointment. Susanne was really concerned because the second one had small ammounts of fresh blood present. She had not seen this since he was in the NICU long ago. When the doctors finally came in, Susanne mentioned this to them right away. They did not seem too concerned because he had recently had a barium swallow done and his NG tube was replaced yesterday. She was advised that if this persisted, then she should contact her pediatrician.
The geneticists got right down to business. They started off by stated that they strongly felt that Paxton had one underlying condition that had caused the other conditions. They could only think of two differentials which included Moebius syndrome or something specific to Paxton that had not been discovered yet. They tended to call the latter, Paxton syndrome. The good news was that Paxton had previously had extensive genetics testing done, which all had come up normal. Unfortunately, for a diagnosis such as Moebius syndrome, there was no specific test for that disease process. It was more of a wait and see approach. This new consideration as to what Paxton may have came as a surprise to Scott and Susanne. The geneticists were noticing evidence of neuromuscular issues that had not been noted before. Their suspicion for Moebius syndrome stemmed from the physical exam findings that they noted on the first day. They felt like he had a lack of facial expression, difficulty with lateral eye movement, motor delays due to upper body weakness, feeding and swallowing problems, drooling, high arched hard palate, and tapered fingers. Moebius syndrome was an extremely rare congenital neurological disorder caused by the underdevelopment of the facial nerves. They could definitely make a case for Paxton, but it wasn't something they could prove. Their recommendations at this point were to hit him hard with therapy. They wanted Paxton to not only receive treatment from an speech therapist, but also an occupational therapist and physical therapist as well. They felt that Paxton should be treated multiple times per week to give him the best chance of improving. They felt that Paxton would need a G tube placed instead of continuing on with the NG tube because of his lack of progress thus far with the oral feedings. This was a surgical procedure that would require anesthesia. Scott and Susanne would have to consult with Paxton's cardiologist to discuss setting this up before they proceeded forward. Next on the list of things that they suggested was a brain MRI. This was the last diagnostic test that was recommended because they just wanted to be completely thorough and they wanted to make sure that everything looked normal. Somewhere around six to seven months of age, Paxton would need his next heart surgery. The exact surgical procedure that was going to be done was still undetermined at this time. Finally, around one year of age Paxton would need his cleft palate repaired. This would hopefully help with his speech development and with oral feedings. Optimistically, each step would give Paxton a better chance of living a more normal, longer, healthier life.
Before heading out, Scott and Susanne had to set up a NG feeding for Paxton. Susanne realized that everything went a lot faster and smoother when there was an extra pair of hands. They got back to the hotel and started packing up their belongings. It took a lot longer than they had expected. By the time they were finished, it was an hour and a half past the check out time. The gentleman that was working at the front desk was very understanding and nice about the whole situation. It was still shocking how much stuff they had once it was all in the car. How do people do it when they have more than one child?
For Susanne's birthday, they decided to go to the Cinncinati Zoo. Even though Scott and Susanne had been to more zoos than they could count, this was Paxton's first time. Everyone was really excited. As Paxton's mommy and daddy suspected, his favorite animal was the monkey. Susanne and Paxton had already perfected the sound that they make and the monkeys were very impressed. Of course, every time Susanne made that noise, Paxton responded with a smile.
Somehow they were able to walk around the entire zoo within three hours. This was definitely impressive. Next stop...the Dreyer house. Scott and Susanne decided to stay with Kelly and her family for their last night in Ohio. They wanted to take advantage of the opportunity to catch up with everyone since at the beginning of the week they had to put all of their time and energy towards Paxton.
Once they got to the Dreyer's house, they had to leave shortly thereafter to meet Kelly's extended family for dinner at a local restaurant. They ate at the Montgomery Inn which was well known for their ribs. Susanne had called the night before to see what she could eat from their menu and luckily she could have the ribs. Dinner was very delicious and the company was even better. Everyone really made Susanne's birthday one to remember. She was showered with lots of gifts and cards. Since there was no "naked dessert" on the menu, Susanne had a bowl of strawberries with a candle presented to her while everyone sang "Happy Birthday". Best of all, she had her sweet baby boy in her arms. She couldn't ask for anything more.
When they got back to the house, Kelly's son, Will, wanted to desperately play Star Wars on the Wii with Scott. While they were preoccupied, Susanne put Paxton to bed. Once all of the kids were sleeping, the adults finished the night by watching "So You Think You Can Dance". Susanne fell asleep thirty minutes into the show, which was not surprising to anyone.
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