Thursday, December 29, 2016
Today was another tense day for my girl. She was up and moving around as early as 1:30am this morning. I went in and repositioned her and gave her some medicine in hopes that she might settle down and finally get some rest. I don't think that ever happened. I repositioned her again at 5am when I got up to run, but she was still awake and moving when I got back so I just put her into her tomato chair and let her watch cartoons. She was still holding her pees today. Only three total and all of them were with help. Needless to say, her body is still super tense today. Lots of crunching in half. Even in her tomato chair (more to the right today though and usually she's crunched to her left). She had speech this morning but it was a challenge. With her so crunched, using her eyegaze is nearly impossible. She was looking down a lot though so her therapist just worked with her on the PODD book. After speech she was still in her chair (and I was downstairs), when I heard this weird series of laughs out of her. It didn't sound like any laugh I had ever heard out of her...almost a possessed sort of laugh. I knew something was wrong. I took off up the stairs and by the time I got in there she had stopped but had her head was turned all the way to the left and her eyes nearly closed but fixed to the left. That lasted another 15-20sec and then she was back to. It's definitely time to put in a call to the neurologist. Not that there's much he can do, I highly suspect puberty is the culprit, but he at least needs to be made aware of this dramatic increase in seizureish behavior lately. Not happy. My poor girl. These tense/crunchy days must be so tough on her body. Lots of hair pulling. Hands shoved down her throat. It's rough on us physically, so I know it must be really tough on her. This afternoon she had both PT and OT and tolerated both well. Mike's parents were in town this week so this afternoon we went to go see them at his sister's house, but since Reagan was still pretty crunchy/tense we felt it would be best to keep her at home with her nurse. Ryan enjoyed chasing ducks and harassing his cousin, and we all enjoyed the gumbo! When we got home Reagan was still pretty feisty. At one point I heard her vocalizing/escalating, so I went up and tried to soothe her. I picked her up and held her. She was SO twitchy in her hands. Definitely has some neurological issues going on today. She just continued getting more stressed, so her nurse eventually gave her oxycodone. It definitely seemed to take the edge off. She never fell asleep with it, but she did calm down a bit. REALLY hoping tonight will be the night for sleep! Poor girl. She's just been so tense the last few days and no sleep sure isn't helping. Please keep my girl in your prayers!