Saturday, September 5, 2015

Off day

Reagan slept well last night but woke up kooky. She's been very off today. Very vocal and on edge. Super sensitive to music (on tv) and talking...we've done our best to just keep quiet. Lots of chorea...kicking her legs constantly, pulling at her shirt and sticking her fingers in her mouth. Her temp is still way off. Very clammy, sweating her back wet, ice cold hands and feet. I started pedialyte flushes today. Not sure where she's headed with this. It seems way too soon for a bad day. No nurse til Tues morning and our regular nurse doesn't get back until Wed. She was pretty much on edge all day. Very vocal, very sensitive...but no actual meltdowns. We kept her on the floor most of the day because of her temp issues. Tonight (with the help of clonidine) she did finally doze off. Hoping she can sleep through the night tonight! I've got my long run in the morning (6 miles)...working our way up to 13.1 in January!

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