Friday, March 16, 2012

No sleep, lots of chorea

Reagan didn't sleep last night...and neither did Daddy. He stayed up all night (on a work night) with a very unhappy girl. No sleep, lots of chorea, super fussy and tense all day. So far we haven't seen any improvement with the increase in clonidine. She's been in one of those moods where she was best in her chair without anyone messing with her. The second I'd touch her or talk to her, she'd start fussing again. The problem is, she gets so sweaty sitting in the chair all the time, you have to pick her up every now and then (even though she doesn't like it). She's starting to show some signs of nausea. Making gaggy faces, sticking her tongue out a lot, maybe that means we're nearing the end of this bad streak. That would sure be nice. We didn't have a nurse today, but my Dad and my stepmother stayed an extra day to help, so that was definitely a blessing. Tonight we do have a night nurse, so at least we should get some sleep...assuming Ryan behaves! Please keep our miserable girl in your prayers. She sure needs some relief from these bad days!

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