Tuesday, January 31, 2012

Still way off

I'm glad we had a nurse last night because little miss Reagan never even made it to her bed! Well, she made it to her bed, but not asleep! She was very restless last night. She slept in her chair and kept waking up off and on all night (thankfully the nurse was here to watch her so we were able to get some sleep). She woke for good around 5:45am. No smiles. Still very serious and very cold and clammy. She's also still having lots of chorea episodes...where she'll yell out and move her legs/arms nonstop, like she's running in place. I don't like this. It's been going on way too long. In certain terms, this bad streak hasn't been that terrible. Reagan only had one day where she was miserable and crying. On the other hand, these off/bad days have lasted way too long and the lack of sleep and amount of chorea has been horrible. It's beginning to feel like it's never going to end. The laughing last night made me hopeful that today was going to be a better day...but I was wrong. It's just been the same. She's still way off. Please keep it in your prayers that she's able to finally get some sleep tonight and that tomorrow is a better day. She really needs some relief from this! (Oh and by the way...we don't have a nurse for tomorrow. Go figure. I'm so sick of our nursing company!)

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