Jaxson's doing pretty well. We had an appointment with Rhuematology to check for Arthritis or other diseases that can cause chronic fever. Jaxson's joints looked very good - he does not have RA! We did some blood work to see if the fever is a "immune" or inflammatory response - if that comes back positive, we're going to have to investigate where in his body there's a problem, if it comes back negative (which I'm almost positive it will) then his fevers are most likely caused by the brain - it could have something to do with the brain damage, but likely nothing we can do to treat, or fix this problem. We will have to look for ways to cope and help Jaxson advocate for himself when he gets older. I always had a feeling that it was something that wouldn't go away. I am hoping when Jaxson is older, he can read his body, know when he's getting dangerously hot, and know how to recover. We'll learn this :) - It could also be a genetic syndrome.
We have genetics on the 17th. I'm more ready for this appointment than we have ever been ready for any other. Lots of blood work but also, answers. If not, we go back to behavioral health.
I feel like Jaxson's lip droop has gotten better, it doesn't glare at us like it use too, but it is still there. Perhaps we're use to it, or its gotten better? We have noticed his fingers on his right hand are starting to cross unintentionally, wierdly, croockedly...at wierd times. His doctors and therapist told me this wasn't a "normal" part of development for this age, and they're not sure what it is..if its part of whats going on developing into something more (like the lip droop) and to monitor it (another watch and wait!). I'm wondering if his trileptal is causing muscle spasms, as suggested on my epilepsy forum. They've talked to us a lot about mitocondrial disorders...think we're going that route next. Anyway, We are keeping an eye on it...Doesn't look comfortable. He got fitted for his hand brace last week, its going to be an awesome green color! He seemed to be fine with it, I hope it helps him in the long run!
He is also waking up screaming everyday. It seems painful. He's had times like this on and off since being born, but it seems more intense now. He wakes up, smiles at me, then goes to move and just screams...It seems like he's hurting and uncomfortable on and off until his nap...Somedays its heartbreaking. He's a very unhappy kiddo right now...hard to say, but he is. I don't know if its pain, or behavioral, or a mixture of everything he's dealing with right now. He's angry, frustrated, and I can just see it in everything he does. Seems like we've been focusing on him constantly to get his mind off the pain/frustration and on to something fun and nothing works for long, its been exhausting! Hopefully we'll get somewhere.
We should get the results of the RA bloodwork this week. I'll update everyone when I know more.
Sending love <3
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