August 17th – not so bad after all

I was very anxious about yesterday’s visit, because Alex had been having such a horrific time lately, but I just thought I should follow up so the many regular readers (all four of you) wouldn’t be left hanging — Alex was in an incredibly good mood. He was smiling, giggling, and at his worst was pretty neutral. Not a single episode of self-abuse the entire hour we spent with him. We gave him some hash, of course, because it helped him so much Sunday evening, but we got to see a really happy Alex even before it could possibly have kicked in (he was happy before we gave him his dose).

Alex smiling and happy at the park

Alex smiling and happy at the park

The only real concern is that he was stumbling an awful lot. Alex has never had the greatest motor control, but somehow he almost never actually stumbles or trips. He’s adapted to his floppy little double-jointed body so well that every time you think he’s about to do a face-plant, he somehow recovers. This has been his life – he’s had incredible balance and coordination considering his low tone and loose joints. But yesterday was different. He was very uncoordinated, not simply a little bit floppy. He tripped and fell multiple times, and skinned up both knees really badly. I wouldn’t be concerned, but (a) he’s never been like this except after huge doses of meds (valium, haldol, and ativan during his worst crisis periods), and (b) loss of balance is a symptom of hydrocephalus, a condition he’s likely to get someday if the growth in his brain isn’t dealt with. It’s basically guaranteed to eventually happen, it’s just a matter of when — unless we shrink the SEGA in his brain with some kind of medication… or operate (brain surgery).

So I wouldn’t trade the visit for anything, but I hate that I couldn’t just enjoy it completely – all the laughter and giggling can’t take away my worries completely, especially with how bad his coordination was.

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