Thursday, October 8, 2009
Reagan slept in a little later this morning, waking up at 6am instead of her regular 4am. Thankfully her tummy seemed settled, no repeat occurrence of the throw up from last night. I'm still not sure what that was all about. I did notice this morning she has tiny blood spots on her face (the size of a pin prick) known as petechiae. They were around her eyes, cheek, and chin. It worried me a little because those are sometimes associated with more serious conditions like blood disorders. I spoke to her pediatrician's nurse and she said that it's probably just due to the force from throwing up but to watch it and make sure it doesn't spread. That makes sense. No therapies today, although we did have Reagan's annual ECI evaluation. It was strange since none of these people have ever worked with Reagan and here they were reviewing her "progress" or lack there of. They always preface these things by saying that it will probably be unpleasant for us, as if we are unaware of the fact that she's not progressing. Helloooooo?!?!? Of course we know. So she's at a 3-6month level in all areas. Not that surprising. I certainly didn't need them to tell me that. We did finally meet her vision teacher today. She was full of excuses as to why it's taken her so long to get started (and she doesn't officially start until next week). She also has no real slots open, so we have to work around her schedule in order to fit Reagan in during her lunch breaks. That should be fun. Personally, I don't think she and I will get along, but she seemed to interact well with Reagan so that's all that matters. Tonight we had Bible Study. It's about 45min away (only 10min from our old house) and Reagan's tummy pains reared their ugly head about 30min into it. We tried our best to soothe her but we ended up just having to leave. A bit frustrating considering the drive and the fact that she cried nonstop all the way home. It's so frustrating the way these things just overwhelm her with pain! I spoke to the GI nurse today and told her about the fact that the tummy pains didn't reemerge until we changed her reflux med. The Nexium wasn't stopping her reflux but maybe it was doing something else (in combination with the Duocal) to help soothe her tummy. It doesn't really make sense to me but we're desperate so we're going to switch back to see if it helps. Reagan's neurologist did finally call us at 8pm tonight but we weren't home so hopefully we'll hear back from him tomorrow. Please keep Reagan in your prayers...lots of seizures and tummy pains sure doesn't make for a happy girl.