Friday, April 9, 2010
Oh this girl! Last night was not the restful night we were hoping for. The Clonidine did not do the trick this time around. Reagan woke up fussing only 1hr after she fell asleep. We put her in our bed where she tossed and turned and fussed and cried. Not fun. It was a loooooong night. When she woke this morning she was all smiles and giggles...who needs sleep?!?! It always amazes me how she can continue to smile and be happy when she's still very much under the weather. Today the chorea was out of control and if that wasn't enough, she was super nauseous. Every time we picked her up she'd gag. For some reason she did much better just laying on the floor playing with her favorite toy. We tried to put her in her chair for vision therapy and she just couldn't tolerate being upright. I don't think I've seen her this nauseous since she was hospitalized. Poor girl just can't catch a break. And then tonight she was laying in bed next to my mom and she started doing something weird with her eyes. Everything was normal, she was just laying there looking at my mom and all of a sudden she opened her eyes way too wide. She did this off and on several times. Then everything was normal again and then a minute or so later she did it again (even more than before). It was like her eyes were bugging out. It looked very seizure-ish to me...but then again so do a lot of things I've seen lately. Hopefully I'm just being neurotic. Maybe it's neurological (like chorea) but not seizure related. All I know is that I don't like it. I'm sick of thinking everything I see is a seizure. I'm sick of Reagan being sick. We definitely need some prayers in these areas. Please keep my sweet girl in your prayers.