Monday, November 12, 2012

Still off

Reagan slept fairly well last night (even though she was still in her chair). She did wake up and flail around every now and then. She's been better today than she was yesterday. No fussing at all, but still very serious. No hint of a smile. Very cold, clammy hands and feet. We noticed today a big bruise on her left hand right around her thumb. I guess she bit it? LOTS of chorea. Legs kicking nonstop. This isn't necessarily a bad thing. I know it's a lot of movement but it's almost like her own form of exercise. I remember a very compelling study that illustrated the importance of exercise in mitochondrial disease. There was a picture of these mice, mice that had been genetically altered to have mitochondrial disease. Half of them were put in a cage without a wheel, so they were unable to exercise, the other half had a wheel and would get on it and run around each day. The difference between these two cages of mice was staggering. The mice that exercised looked completely normal and healthy...the mice that didn't exercise were missing tufts of hair and they very weak and feeble, they would even fall over when they tried to walk! So, maybe these annoying seemingly unpurposeful movements (chorea) that plague Reagan, do in fact serve a purpose for her?!?! I'd like to think that's the case. Despite still being off today, she did make it through both vision and speech this morning without any problems. Then we headed into the med center for a dermatology appt about the recurring red patch she keeps getting on her bottom. Of course she doesn't have it right now, but we made the appt weeks ago and I've got pics of it, so we went. Not a lot of information. Dermatitis. Sure I could have guessed that. We got a prescription for something to try next time we see it. Reagan was pretty mellow the rest of the day (other than her legs kicking and arms flailing around her face and pulling her hair), that is until tonight. She fell asleep on her own and went to bed without a problem, then just as we were getting ready to go to bed at midnight, she started flailing around in bed and freaking out. Hopefully we can get her to settle down and go back to sleep! Thank you for your continued prayers for our girl!

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