Reagan was up and down last night. Our night nurse was here, so she was able to get her back to sleep and this morning I found her asleep in her therapy room. She woke happy and smiley and was super excited to see her Grandma was here when she woke up!! She's been a good girl today. Very smiley, a little less vocal, but still a little on edge. This morning she had speech and she ate some food. I sat in and was watching her (she was sitting in her orange childrite seat which doesn't have any head support), and she was doing really well holding her head up and eating...but twice she suddenly dropped her head backwards (like she couldn't hold it up at all). That concerned me a little (makes me worry about the s word). We moved her to her special tomato seat and her therapist thought she saw her do something funny with her jaw, but when we watched her closely, we never saw anything. After that she was just hanging out with the nurse, waiting for her teacher to come, when Daddy came home for lunch and came in to say hi to her. She got the frowny lip and then broke out into tears. I picked her up to console her and as I was holding her, she had a huge wet & dirty diaper that proceeded to leak all over both of us!! Three of us cleaned her up (while Mike held Ryan) and then afterwards, she seemed to feel better! Her teacher came and worked with her and she was fine the whole time. Then she had PT and endured lots of stretching and even an hour in the stander! Tonight Mike was holding her and she broke into tears again...we still don't know what happened to make her cry like that. She got over it though and was fine. A little on edge, but fine. Tonight she dozed off around 10:45pm (before her clonidine)...hopefully she gets a more restful night of sleep tonight! Please keep it in your prayers that she continues to fight off the bad days! Come on girl...you can do it!!
(I can't figure out for the life of me how to turn these around!)