Reagan fell asleep in her chair around midnight last night but she woke the second we tried to put her in her bed. Mike stayed up with her for another hour or so until she fell back to sleep. This time he left her in her chair and "we think" she slept through til 7:30am. When she woke this morning she was still very startled looking, having chorea outbursts where she'd yell or run in place, and making a few gaggy faces. We'd see her make a frowny face and then seconds later we'd see a hint of a smile. She was questionable for the first hour or two that she was awake but then we could clearly see that she had turned a corner. Her hands and feet were normal temps, she stopped making gaggy faces (and was considerably less spitty than yesterday), and we even got some laughs out of her! Oh how I have missed those laughs! She's been sweet and awake all day but tonight you can tell the exhaustion is hitting her. When she fell asleep tonight, she was OUT. Her pump even went off for a while before we heard it and she didn't move an inch. I'm so glad that she's finally going to get some decent sleep...in a real bed!!! I'm hoping we can all get some good sleep over the next few days. This bad streak really wiped us out! Thank you all for your prayers!!!
As a side note...we've tried just about everything for Reagan's nausea. She's been on round the clock Zofran, Phenergan, Scopolomine patch, Periactin...none of which did anything for her. The only thing that has ever helped is Nortriptyline, which she's still on, I'm wondering if maybe it's time to increase the dose again!?!?