Thursday, February 25, 2016


I don't think Reagan slept much last night. I moved her to her chair around 3:45am but she was pretty tense and restless. She's been a lot more serious today. Everything about her is way off! She's super sweaty and clammy, her hands and feet are bright red, she's doing a lot of gaggy mouth movements and grinding her teeth, and picking her up is like trying to move an ice sculpture! She's so extremely rigid. She's also been more sensitive to music/talking/her brother. And neurologically off as well. Very startley..throwing her right arm up a lot (her left arm was in a restraint and under a blanket). She's just plain OFF. She did manage to push through two therapies today...OT and school. In OT they mainly just worked on stretching because lets face it, there's nothing she needed more today! Her teacher said that even though her head control wasn't great and she was preferring to keep her head down, she was surprisingly good with her hands today and they played with a ball and worked with her switch and she did really well with both. I'm glad we were able to squeeze in school today, because honestly, I don't have a lot of confidence in what tomorrow will bring. I'm really hoping she can sleep tonight, but that's not looking good either. I've given her oxycodone and it didn't touch her...she's still just as tense and stressed as ever. I also tried some ibuprofen, but so far, no improvement. I was hoping to save clonidine for bedtime but an hour or so later she was losing it (starting to cry) so I did cave and give her clonidine. It definitely didn't help at first...the crying continued...but eventually she did calm down and was quiet. No idea how we're going to get her to sleep tonight. It doesn't look good. Please keep her in your prayers. She is obviously not herself right now.

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