Wednesday, January 23, 2013
Reagan didn't sleep much last night. I'm not sure if it was because the night nurse was here and she just wanted to sit up with her, or if she is getting back into her not sleeping mode. Whatever the case, she was very restless and only slept a little off and on. She's been sweet and smiley again today. She only had one therapy, speech, but she did great for that. Then we went to the orthotic place to pick up her new AFOs. When we went to have her cast 2 weeks ago, she slept the entire time! Today she was moving and kicking up a storm! She almost took the orthotist out a few times! Of course they only had one pair of her AFOs, so we had to wait while someone drove in from their other location with her second pair! We were there two hours or so total and brother was not nearly as patient. And we'll be heading back again at some point because she cut down one of them way too short and her big toe is hanging out! Not gonna work! So they are going to have to remake the whole thing because she cut off too much! Not sure if that means we have to wait another two weeks or what. The night time "dynamic" AFOs (that have a hinge in them so they stretch her when she's relaxed) look a little better, but I'll have to try them on her again just to make sure. I'm not so sure we'll really be using those at night...my girl has enough sleep issues. Anyway, Reagan was great all day until tonight when her brother was pitching a fit and screaming his head off! That set her off and she began crying! It was hard to get her to stop, but once her brother was out of the room, she eventually calmed down! She was OK the rest of the night. Her temperature control is definitely way off right now. Her back is sweating so badly she's soaking the back of her shirt, meanwhile her feet are ice cold! What are we going to do with this girl?!?! I did finally hear back from the GI doc and he's in agreement in trying a new formula. He said that her egg white allergy is significant and that if she's that allergic to egg whites, it's possible something else could be aggravating her as well. His nurse is supposed to contact me about the details. It sounds like we'll either be trying Elecare (which is almost identical to neocate, but for some reason some people do better on one or the other) or some other elemental formula. I hope it helps. Prayers that my girl can hang on and continue to have good days...(and please keep her friend Abe in your prayers as he is in the hospital hoping to find a solution to his seizures)!