Sunday, February 19, 2012

Surprisingly good

Reagan was a little restless and reluctant to fall asleep last night. Mike laid down in bed with her but he fell asleep much sooner than she did! He did finally come to bed and when I woke at 4am I checked the monitor and Reagan was fast asleep. Of course, when I woke at 7am she was moving around and wide awake! Even though she was quiet and seemed OK, I decided to just get up with her. She was a smiley girl and for that I was very happy! She's actually been a sweet girl all day today...what a nice surprise. She's still being very sensitive...loud noises startle her and us talking or even the tv being too loud will cause her to break out into tears. Her hands and feet (and nose) are still cold and clammy. But overall her mood today was good. She was happy to snuggle, squirm around on the floor, and chew on her fingers (her thumb and pointer on her left hand are all red from the chewing). She did start getting a little fussy tonight right before Mike laid her down. I'm not sure what tonight or tomorrow holds, but I'm certainly thankful for the unexpected good day we had today. Tonight we watched Extraordinary Measures, a movie I had wanted to see for a while now, and Mike had DVRed it. I cried several times throughout the movie, because we know what these people were going through all too well. If only a cure for mitochondrial disease was that simple. The problem is that it's not just one enzyme or one's different for every kiddo and it's quite complex. Don't get me wrong, I'm thankful that Reagan is in the only clinical study available for mito at this time, but it's not the same as a cure. Oh to have a cure...

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