Tuesday, July 27, 2010
Reagan has been a bit of a turkey today (no surprise...since we were without a nurse). Mike heard her making noises in her bed around 5am. He picked her up and put her in bed with us, but she was NOT going back to sleep. She was good though, she just laid there beside us moving around, of course then none of us slept. Finally around 7:30am I got up with her. She was pretty good all morning. Smiley, laughing, but lots of chorea. We gave her a bath and then she had occupational therapy. She did some work on the ball and was impressing her OT with her head control when on her tummy (problem is when you're holding her, she wants to bend forward and has less than impressive head control). Then as the afternoon went on she started getting a little whiny. Then whining turned into red-faced screaming. I know she's got to be tired and needs to catch up on sleep, but the increase in chorea makes me think it might be something more than that. She'd be fine one second and next thing you know she's screaming bloody murder. What are we going to do with this girl. Finally I had to break out the clonidine in hopes that she'd sleep it off. She's out right now, but let me tell you, she was not a happy camper when she fell asleep. Please say some extra prayers for her tonight...that she gets a good night's sleep and wakes up happy and healthy tomorrow. We sure don't need another sick girl.