Thursday, April 11, 2013

Out of control chorea

Reagan had a bit of a rough night last night. She fell asleep on her own without clonidine but woke back up around midnight and was thrashing around. The night nurse picked her up and gave her the clonidine. She got worse. She was not happy and she couldn't stay still for even a second! At this point Daddy got up because he couldn't sleep and took her from the nurse and laid down in bed with her. She fell back to sleep for a while, but eventually woke back up and the nurse picked her up again. This morning I found her asleep on the floor in her therapy room. She woke up around 8:30am and she was fine. Still moving a lot and constantly crunching in half with her hands up in her hair. She had OT at 9 and Speech at 10 and did fine for both. Then this afternoon she had PT (her therapist said she's really tight in her legs/hamstrings) and then stood in her stander afterward. She fell asleep after about 30min in the stander, so we took her out and just left her AFOs on for the full hour. She slept for another 30min and woke up just in time to take her AFOs off! (Her feet get SO red from wearing AFOs...but thankfully the redness goes away fairly quickly.) This afternoon she started to get a little more vocal (in a bad way) and we suspected tummy issues. Finally she did have a dirty diaper, although we're still thinking there's more where that came from. Tonight she continues to be on edge...smiling but making noises that don't sound very happy (she gets even worse when I talk to her or try to hold her). Lots of chorea. I'm not sure where this is headed, but I sure hope we can avoid the bad days at least for a while longer!! I'm still not feeling well. I don't know if it's allergies or what. I've got a sore throat, runny/stuffy nose, sneezing, a dry cough...and Ryan has it too! I'm hoping it's just allergies and that Reagan is spared!

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