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1/24/08

Jan 25, 2008 - 0 comments
Tags:

cerebelitis

,

ataxia

,

seizures

,

developmental delay



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Well today with Connor was rough. He has had a cold since before we left the hospital and it has been getting worse. Now he has started with a fever. After that he threw up all over me, himself, the blankets and anything else within range. It was so much I started to wonder if maybe his stomach wasn't emptying the way it should. I had to give him a bath, me a bath and wash a whole lot of stuff. I don't know if this is him just being sick and his cold getting worse, if it is part of his condition. We are supposed to call the hospital if his fever reaches 101.5. He didn't get quite that high but he is close. I don't know if I am supposed to still call the hospital or his ped Dr now because he was discharged a week ago. I am also concerned that there might be an infection brewing from him spinal tap. Again everything is a wait and see game.

I cried today after talking to my mom (she watches my nieces during the day) and finding out that my niece, who is 2 weeks older than Connor, was climbing up and down off of the sofa, standing on rocking chairs (no she isn't allowed) and doing so many things that Connor is not (before this they were days apart in hitting milestones). I feel so helpless watching him lose more and more ground everyday. He didn't even try to walk today. At least in the mornings he would for awhile until he got tired of falling down. He can still walk (at least as of yesterday he could) but he is so unsteady that he gets hurt alot. He doesn't go down on his bottom or try to break his falls which is just instinct. He falls face first into things or to the side. Every once in awhile we get lucky and he goes down on his butt. Then he usually falls backwards and hits his head anyway. For the most part he sat in my lap or sat in his bed. His disposition is slowly changing and that scares me. He is the most easy going, laid back, loving kid I have ever seen (and I am not just saying that cause I am his mom either). He is getting frustrated very easily (who wouldn't) and he is just getting a temper. I don't know how much of this is from frustration with what he is going through, his age or directly related to his condition. It is scary because now everything seems to be of major importance even things that I am sure mean nothing I look at and wonder if it is his condition progressing.

I keep calling it a condition because we don't even know for sure if he really does have cerebelitis. They only THINK he does. I have gone ahead and written an e-mail to a hospital that I just heard about in my state for kids to see if they have anyone specializing in what is going on with Connor. I want a second opinion and maybe a new Dr. Even if a new Dr comes up with cerebelitis then at least I will start to believe that we really may have a diagnosis.

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