Bryce playing with his birthday present.
Wow! It's been WAY too long since I updated this. I need to get better about updating. We celebrated Bryce's birthday on December 9th. He turned 2! I cannot believe he is two now. I also never thought he would be on a feeding tube for this long (although I was warned!). :)
Bryce had a fun birthday. We stared the day with him opening his presents. This year he got a Little People tractor. He loves animals and is interested in making animal sounds now. He also got a toy pull-along dog and clothes from Grandma & Grandpa Bell and some Blue's Clues song books from Grandma and Grandpa Chappell.
I baked Bryce a cake that he didn't eat. He had absolutely no interest in even taking a taste, although the day after he did take a taste or two. Bryce's birthday was on Sunday, so I didn't have a lot of time (or energy) to throw together a cake after church, but it turned out okay. I made a cow shaped cake (LOL) this year. Like I said, he likes animals and especially saying the cow sound (MOOO!). (Sorry, this isn't the greatest picture!)
I'd like to give an update on Bryce while I'm here (I'm probably going to copy & paste a lot of this from my message boards):
Teaching Bryce to eat orally has been the biggest roller-coaster. So many ups and downs. As soon as he starts doing well eating, something happens like teething and he totally backslides.
He's gotten to points where he would eat ten bites of solid food, drink 2 oz of formula or water, and munch away on veggie sticks or cereal, but recently he went through a three month period where he would not eat anything! He would accept food, but spit it right back out. Even liquids. I just could not figure out what was wrong this time! I knew he wasn't teething and he hadn't been sick. Something, however, was causing him to not want to swallow - AT ALL.
I just totally felt like I was not making ANY progress with him anymore. I was seriously thinking about trying to get him into one of those big
feeding clinics. There's one in Denver which is somewhat close. Bryce's occupational therapist actually gave me a name of a small feeding-type clinic in Orem that could give us an evaluation. I also kept wondering if it could possibly be his tonsils and adenoids bothering him. I decided to have his Ped. ENT check them just to rule that out.
Something was bothering him and making him not want to swallow!
Bryce's nurse and his feeding therapist both thought that the reason he hasn't been wanting to swallow could be an issue with his tonsils and adenoids. His nurse looked at them and said they looked really big. They suggested we take him to the ENT to have them checked.
SO we took Bryce to his ped. ENT at the children's hospital. He looked at his tonsils and said they are not big at all and they are fine. There's no reason they would be causing him problems. However, while we were there the ENT (he's awesome) grabbed the speech therapist who happened to be there, to see if she had any ideas. We've worked with her before when Bryce was in the PICU and she's great. She said that when she sees kids stop wanting to swallow like that,
almost always it is because of reflux and they need their dose increased. So we decided to give that a try. I called Bryce's GI doctor and they increased his prevacid from 18 to 30 mg. Within a DAY he was eating food again! I was so surprised. I also felt really bad that his reflux had been bothering him and I had no idea. He had been sleeping fine and didn't act like he was in pain from the acid, but it must have been bothering him just enough that he didn't want to swallow.
He still is not where he once was. He will eat crunchy things like cereal, veggie sticks, cheese puffs, etc. He will still not take any liquids or any solid food that is a wetter texture (like baby food, etc). I really think I'm going to call that clinic in Orem now and see if we can get some more ideas.
We also recently took Bryce in to see the ped. dentist. We have him seen at the Cleft Palate Clinic at Children's, and the orthodontist there recommended he see a dentist because he has an underbite where his bottom teeth are in front of his top teeth. Bryce has all of his baby teeth now, except for the two lateral incisors on top (the two teeth next to the front two). I thought it was odd that those two would be the LAST to come in, but I figured his upper jaw is so small that it was just crowding his teeth and they were having a hard time coming in. Well they managed to get an x-ray of his front top teeth and we found out that he's completely
missing those two teeth! Apparently missing teeth is common with Kabuki syndrome. The dentist said this doesn't mean he will be missing permanent teeth too. We'll just have to wait and see. We will also have to wait until he's older to determine what will need to be done with his underbite. There's always something with this boy!
