Friday, April 21, 2017
Ryan slept last night until 5am. Then he was up. He came to our bed and didn't really want to go back to sleep. Not until 7am or so and then he was out. Gotta keep this boy out of our bed! I had checked on Reagan at 5 and she was awake and sideways in her bed again. I moved her and tucked her back in, and I think she went back to sleep, at least in spurts. At 9:15am this morning her nurse saw her have another seizure. Head turned completely to the left, eyes closed, and left arm stiffened out. Lasted about 15 sec. At 10:40am she had another one. Arms crossed straight out and head/eyes fixed to the right. WTH?!?! This is crazy. I immediately put in a call to the EEG scheduler. They had contacted me a few weeks ago, but I told them that it was so hard to predict when she might have one. Well, today seemed like as good a day as ever. They just so happened to have an opening and they were able to get quick insurance approval. So at 2pm we headed up to Dell to get her hooked up (she'll wear the leads all weekend at home and then they'll remove them at 8am Mon morning). We didn't see any more definite seizures but as I put her into the car and while holding her hands down as they were putting the leads on, she was very zoned out and stiffening her arms occasionally (but no head turn). Unfortunately, none of that was recorded. She looked very tired afterward. We thought she would doze off in the car, but she never did. She waited til we got home. She dozed off and on the rest of the night. A little restless. Lots of teeth grinding and lip smacking/swallowing. Definitely seems nauseous or gaggy. Not sure if that's because she's a little congested (and maybe having drainage down her throat), if it's the gauze wrapped around her head and neck, or because she's been laying down unelevated for a while. No clue. I don't like it though. Her head wrap has already slid up and off her head a few times so I've had to rewrap it. Who knows how long we'll make it with everything intact. Hopefully long enough to get some information from this pain in the butt EEG. Mike transferred her to her bed and she's asleep for now. Hoping she stays that way.