Friday, October 7, 2016
Reagan was awake early this morning when I got up to run, but I changed her diaper and tucked her back in and she fell back to sleep! She woke up right around 8:30am and was super sweet and precious. Very smiley. Her speech therapist came at 10am to work with her and everything was going well, they did some feeding and then were switching over to using the eye gaze (about 30min into her session) when she started making a weird grunting noise. They just assumed Reagan was needing to poo or something. I could hear her making some noises that no longer sounded happy, but I was downstairs and wasn't really getting the full effect. Her therapist then came and asked me if Reagan ever had a seizure that looked differently so I immediately ran upstairs and found her sitting in her chair with her eyes closed and pretty much unresponsive. I don't know if she was in a postictal state or still stuck in a seizure or what, but I picked her up out of her chair and laid her on the floor. I kept trying to get her to acknowledge me. Finally a minute or so later, she opened her eyes and became alert again. Once again she was back to her super smiley sweet self. No clue what that was about. I've never seen a seizure from her that started off with grunting or with her eyes closed (maybe absence seizure). She never stiffened out at all. Didn't have her eyes fixed...but her eyes were closed. I still don't even know for sure it was a seizure, but I definitely don't like the looks of it. Really hoping this is all just hormone related and will pass. She was fine the rest of the day. Great really. Super sweet and smiley. A little vocal at times. She had school this afternoon and did really well with that. She's been super precious tonight, her temp regulation is still a bit off and her back has been getting super sweaty when in her chair, so she's spent much of the night rolling around on her back. She seemed to enjoy it...squirming all over the floor. Us constantly having to straighten her out! She did have a more typical stiffening out and head turn to the left (eyes to the upper left) at 9:30pm tonight, but that's it. She's still going strong right now and it's midnight! I think it's time for clonidine...please keep my girl in your prayers.