Sunday, September 25, 2016

Great Saturday - Off Sunday

We have been trying to get into the habit of getting out every weekend - anywhere; somewhere, just to get out of the house. The boys are always fairly pessimistic about going out on the weekend, as they would rather just be plugged into a screen the entire time, which is what we have been trying to avoid. They of course need their downtime on the weekends after being cooped up in school all week, but they also need to have some diversification of activities. So, this weekend, we went down to the annual Plaza Art Fair, which is a fairly big event that shuts down a large portion of the Plaza here in KC. The weather was perfect and despite Jonah's incessant griping about walking, the heat, his hunger pangs, and whatever else he could complain about, we managed to have a decent outing. Mira was in a great mood the entire time, in fact, she has been doing really well the past few days - that is, until last night. If I have said it once, I've said it a thousand times - epilepsy sucks. She was doing awesome all day yesterday - not a single fuss or whimper, was full of energy, and had a decent appetite. After our Plaza outing, another walk, and a brief stop in the park (I realized that she is waaaaaaaaay too tall for the swing in the park now - see picture above) yesterday afternoon, she went to bed, very uneventfully. However, about 9:00pm, she had a massive seizure in her bed, which we heard from the living room (our house is very small, so we can hear everything from almost anywhere) and rushed in to find her completely rigid and clammy. She continued all day to have a continuous episode of dystonia, complete with odd, rhythmic movements in her arms and torso, cold, clammy feet, turned inward, and her being in a very altered state, mentally. She would barely drink anything this morning and had a completely dry diaper. She continued to be dry up until this afternoon, which we finally started to see signs that she was coming out of these dystonic events, which she has had in the past. By later afternoon, she started kicking her feet more, finished off a couple of bottles (albeit very slowly) and finally had a wet diaper. Today was just a polar opposite of yesterday - epilepsy robbed her of having an entire solid weekend.

No comments: