Jaxon's Recovery
Jaxon's shunt recovery has been a little difficult. The day before his follow up appointment he started falling down more and his left side seemed a bit weak. He also started a squinting thing with his eyes. The morning of the follow-up he had preschool, and the the school called. When I see "Farley Elementary" on my caller ID, I immediately think Huh what's it gonna be. His teacher was telling me he's falling down a lot and his left side just seems really weak. He is misjudging distance. In fact he did face plant on his train table at home. As I watched him it was just a simple, he didn't know how far away he was.
We went for the MRI. It was a quick 5 min deal. I was very excited All of our previous MRI's he's needed to be put to sleep. After the MRI we met with the Neurosurgeon and he informed us there was fluid build up on the right side of the brain between the brain and the skull. This could be causing problems but he didn't think so. The good news, yes there's good news. His ventricles are half the size they were. The pressure has been released from the brain and brain stem. The shunt is doing its job. This should help his development but only time will tell. We expressed our concern about the falling down and lack of stability on left side. He immediately ordered a CT scan to see how old the blood was. The next day we got the results and the blood had occurred sometime after surgery. So as long as it doesn't get worse it should be ok.
We met with his neurologist today because I still am not satisfied with Jaxon not wanting to use his left hand. He will try to use his right hand to unstrap his left arm from his car seat. This has never been a problem. We always play a little game, arm out, arm out Jaxon out. So for him to refuse to take his left arm out is just not normal. The neurologist didn't have any good ideas but wanted to see him to get a baseline in case things get worse. One of our options is an EEG but really it won't tell us much because we already know he has seizures. The only thing we could possibly do is a 3 day EEG and try to find out if he is having seizures in his sleep. And that's only if he has them while hooked up to the EEG. So I opted to wait and see how things go for the next couple of weeks.
I know this all sounds like a lot and starting something new sounds crazy but Jason and I feel like his speech and some other things are going so well we have decided to start going to the KU feeding clinic again. We will begin 1 week after Thanksgiving. The nice thing about the team is it consists of a dietitian and a psychologist among other therapist but these are 2 we don't have a lot of access to normally. Jaxon has made so much progress eating since we last saw them in February 2011. We feel like maybe we can really get somewhere. The downside is they only see patients on Wednesday mornings, so he will have to miss preschool when we go. But he gets all the therapies at preschool every week and eating is not included so we have to fit it in somewhere.
