Sunday, September 6, 2015

Too soon for a bad day (and seizure-ish episode)

Reagan did sleep through the night last night!! Actually both kiddos stayed asleep long enough for me to run and take a shower this morning! Win win! Reagan woke up OK. Giving some smiles but still very tense and sensitive like yesterday. We stayed upstairs for a while so I could give her all of her morning meds, then we came downstairs right as Daddy and Ryan were leaving for the aquarium. I kept her on the floor (as she had just sweat through her clothes earlier while sitting in her tomato chair)...and I went into the kitchen to grab some water. While in the kitchen, I heard her make this weird gasping noise (I had heard her do it yesterday as well), I ran into the room to find her left arm stiff, head turned to her left (eyes looking down and to the left), and she was out of it. Eventually she snapped out of it, but I don't need to tell you that this is very seizure-ish. Now she's been doing something similar to this for quite sometime usually when she's dozing off to sleep. She'll stiffen out her arm and pop back awake. We've told her doctor about it in the past, but I don't think it's ever happened on an EEG, so there's not much they can tell us. We have chosen to just ignore it. Compared with what she's dealt with in the past, it's nothing. But I did get a video of the tail end of the episode today. I will send it over to her doctor this week to see if maybe we need to get her Banzel levels checked or something (I don't remember the last time they checked them). Anyway, I kept filming her for another 10min and she never did it again. Eventually (maybe 30min later) she dozed off and slept for a few hours. When she did wake back up, she was very startled with wild, wide eyes and very serious. And stiff. Eventually she did chill out a little but remained stoic but beautiful for the rest of the night. I held her for a while and noticed that she was super twitchy (her arms and legs were twitching A LOT) and also very poppy in her joints...lots of clicking going on...even in her toes! She was also grinding her teeth off and on...something she's been doing a lot more lately. Tonight we gave the tomato chair another try, she was super calm and still in it, but she ended up completely soaked in sweat again! She eventually fell asleep while laying on the floor and Mike was able to get her up and into her bed successfully. Unfortunately, 30min later or so she started crying! Not sure what caused the outburst (Mike thinks the stillness was foreshadowing of bad days), but eventually she did doze back off without medication...all she needed were some snuggles from Daddy. Hoping he's wrong and she wakes up just fine tomorrow. It's definitely too soon for a bad day!



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