Saturday, March 5, 2016

Absolutely precious

What a wonderful day for my girl!!! She has been absolutely precious all day today. Less laughy, still a laugh here and there, but no crazy laughs. So calm and so sweet. It's days like today that I'm almost glad we didn't have nursing, because we got to enjoy spending the entire day with our girl! However this morning she did have another seizure-ish episode that this time I got a video of most of it. What I missed on the video was the eye sensitivity and then a bunch of blinking I saw before hand which was followed by the pronounced head turn and eyes fixed upward (that I did get on video). This time though she was facing the other direction, head to the right and eyes looking upward to the right (and fluttering under her mostly closed eyelids). We've been seeing things like this for quite sometime, off and on for years really (usually as she's starting to fall asleep), however her EEGs always come out clean and better than the year before. So for now we'll just keep to calling these seizure-like episodes, although in my opinion they are a little too close for comfort. This didn't spoil her mood or our day. She was wonderful so we decided to pack up and take a little drive through the Texas hill country for some BBQ. We drove to Bertrum, only about 30min away but we took the long/scenic route that took closer to an hour. She was great the whole way and I took a few selfies of her and her brother! They both did great at the BBQ place and then we headed back. Again we took an even more scenic route, but it was a beautiful day and we didn't have to be back until 4, since Ryan had a bday party to go to. Both kiddos dozed for a bit on our way home but were awake and happy when we got home! Ryan and I then headed off to the bday party at Catch Air and Reagan stayed home with Daddy (even though she was in a great mood, I didn't want to take her there on the weekend when it was PACKED exposing her to God knows what)! Ryan had a blast, ate like a pig, and left without too much of a fight two hours later! Reagan and I got in some good snuggles tonight and she fell asleep on my lap! Love this girl!!! (And despite the episodes we saw last night and this morning, I did go ahead and continue with the switch over to the Onfi, since the APO clobazam is still on backorder and we are getting lower and lower on what we have left!)






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