Thursday, January 30, 2014

Still off

It's been another interesting one for my girl. She slept well and woke up tense but calm. Definitely still on edge, increased chorea, cold/clammy hands and feet, hands constantly in her mouth (keeping her fingers so wet, the skin is now peeling off), grinding her teeth, etc... It's hard to tell whether she's on the verge of heading into (real) bad days or if maybe (hopefully) this is a more mild form of bad days thanks to the Lyrica. I guess time will tell. For the most part it's been an OK day. This morning she had a good session with her vision therapist (with a couple of random outbursts of crazy). Then 30min or so later (right before she was supposed to have PT), she had a major crying meltdown! We gave her clonidine and it did seem to help her calm down and eventually she took a little nap. When she woke, she seemed to be feeling better. Still very tense, but no more outbursts. Not a fan of diaper changes or being messed with (and definitely preferred a more structured chair), but no real fussing. Tonight she seemed to be getting tense again, so I gave her some ibuprofen, hopefully that will take the edge off whatever is bothering her. She's looking very sleepy, but when she starts to doze off, she pops back up with a burst of chorea! She's also showing some signs of nausea tonight...burpy, licking her lips a lot, and swallowing. Please say some prayers for sleep tonight and a major turnaround tomorrow! 
Ryan is not feeling well again, I think he has a cold or something! This is him at the grocery store today! This has NEVER happened before!

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