Oh what a night! Reagan started up with the erratic behavior right before bedtime. We didn't even put her down til midnight but she was wide awake and moving nonstop. She was crazy with that left hand, hitting/wiping at her face continuously. I tried putting her weighted blanket over her arm to hold it down...she was not having that! She'd start fussing, then crying, I'd pick her up and soothe her. But she was NOT going to lay there in that bed! At 3am I was desperate and even tried the "cry it out" method. That didn't work either. I could only take so long of listening to her scream. Then we put her in bed with us. She wasn't really thrilled about that either. She was very fussy and restless. I don't think she finally settled down til around 6am. Then she slept. She was still out like a light at 10am when her teacher showed up. We tried our best to wake her, but she was limp. We even put her AFOs on her for an hour and she slept straight through it. What are we going to do with this girl??? No really...what?!?!? I definitely think it's all chorea related. Maybe we should add back her nighttime dose of Risperidone? Although I'm still skeptical if it's helped her in the least. But seriously...we're desperate for some sleep tonight. Maybe we should try the Clonidine again at a higher dose? I have NO clue what to do but if we don't get some sleep we're all going to go insane! Unfortunately based on the events of this afternoon I don't think sleep is going to happen tonight. Reagan slept nonstop until about 5:15pm. About an hour or two before she woke up she started crying out in her sleep. She was doing it often and each time she'd take a huge breath in and scream and then her body would go completely limp again. It was very strange and it definitely concerned me. And when she woke up...the crying continued. She was on edge for a while and then the full out screaming crying started. Poor Mike was watching her while I went with our Bible study group up to the Ronald McDonald House up at Texas Children's to serve dinner. He was a sport though and somehow managed to cope until I got home to relieve him. I could have never imagined what I would come home to. Reagan was beyond tense. Her whole body was trembling and restless and she kept crying her breath away to the point where she'd gag herself. It was horrible. She was sweaty and red and just full out hysterical. Something is not right...not right at all. She certainly seems to be in pain. It's midnight right now and I think I'm in for a very very long night! Please say lots of prayers for Reagan!
Here is the video I've been promising. Sorry this was a 10 min video and I couldn't figure out which clip was best. This is from Sunday (pause the blog music to hear her). While I was attempting to edit it yesterday, Reagan was sitting on my lap and heard the video and started saying GaGa again! So cute!