I'm posting this one right away (before publishing my other posts), because well we need some prayers! It's been a bit of a rough day today for my girl. She woke up a little kooky but OK. Very crunchy. Her circulation is still a bit off. Red hands...not cold but warm. Very sensitive to us talking, so we just had to be very careful. She had a dermatology appointment this morning and of course we would have to leave just as the garbage truck was making it's rounds through the neighborhood. Needless to say, she did NOT like that. She was very tense and almost in tears before we even got out of the neighborhood. Her nurse had to give her something to calm her down and then she settled down and even dozed off. She woke up eventually during the appointment when they had to check her moles. She has two we are keeping an eye on. The one on her back grew a little and the one on her hip stayed the same. She said both are very consistent in color and shouldn't be anything to worry about. We'll just keep an eye on them for now. We drove home and got here just as Reagan's PT was pulling up. She was still tense but her therapist was able to get some good work out of her. She had a short break (where she was attempting to doze off) and then she had OT. Private OT but her school OT came to observe. She did well for that except for the talking. Then she had another break and her vision therapist and speech therapist from the school came. She did surprisingly well with that making very clear choices between toys. Afterward she was still super crunchy so her nurse tried to get her on her tummy for a bit. Before she left she noticed her elbows were red but thought it was just from the time she spent on her tummy. I later noticed that the redness wasn't going away and was in fact little scratches all over her elbows! She was obviously pulling them in while in her wheelchair and got seriously scraped up by the Velcro! Poor baby! We will definitely have to make sure everyone is on the look out for that when in her chair. Tonight she's been super duper tense. Very crunchy. Grinding her teeth painfully loud. Pulling her hair and yanking on her tube. Not exactly sure how we are going to get her to sleep tonight. It's 11pm right now and she's grinding away even after clonidine. And I mean grinding! I've heard a lot of teeth grinding out of this girl and this may be the worst yet! I'm afraid she's going to grind a mouthful of teeth out! Poor girl. We don't know how to help her. I just rubbed some peace and calming essential oil on her and Daddy is laying down with her. If she could just fall asleep. It's not looking good. Please keep her in your prayers!