Childhood disintegrative disorder: Really starting to worry

It’s now Thursday night and we still haven’t heard from the Cleveland Clinic about Gavin. This week I have been paying much closer attention to Gavin’s movements. The more I see the more worried I’m becoming. I don’t know if maybe I’m just focusing more on this now or if it’s really this bad. Gavin is becoming more and more uncoordinated. He’s dropping things more and more often.

This is honestly starting to freak me out. I have no idea if this is related to his loss of upper and lower peripheral reflexes but in my mind it makes sense that they are related. It’s like his body just isn’t doing what he wants it to do. That scares me to death, it really does.

Childhood disintegrative disorder: More questions then answers

Is this something possibly related to childhood disintegrative disorder? Is it some sort of peripheral neuropathy?  The neurologist said it could also be a neurological disease, or even maybe a muscular disorder. Either way, it’s difficult to see a silver lining here. I mean, we went to the Cleveland Clinic in hopes of finding some answers but instead left with more questions then we arrived with.

Just once, just one time I would like to go to one of these appointments and actually come home with answers. I can’t think of the last time that we went to something like this for Gavin and actually got a solid, tangible piece of information that helped to fill in some of the missing pieces to the puzzle that is Gavin

WTF, WTF, WTF…….Yup.. that still sums things up

As I stated the other night, WTF, WTF, WTF is really the only way to sum this mess up. I want some goddamn answers for once. If you can’t tell by my word choice, I’m on the edge right now. Honestly, I don’t know if I should be worried about these new symptoms? Are they going to continue to get worse? If so, how much worse? What, if anything can we do?

Perhaps, the most important question is WTF is going on? I don’t think that’s to much to ask.  

Thank you everyone for all the emails and support. I would ask that you please keep my family, especially Gavin in your prayers.