Friday, August 17, 2018

Well, it's August.

Hi blogland. It's been pretty busy.

Instead of doing a massive recap from April, I'm going to update the April Chorus post. There's just too much to cover, so I'm going to start from now.


Things are going okay. School starts next week, and there's been issues related to her mobility. Mostly issues related to Elena doing work to preserve and protect her mobility. As in, extreme reluctance to do her exercises, work with me, stretch, etc. This has been true for most of this past year. And the results are what you'd expect; she's less mobile, has less endurance, and her crouch is worse.

Given the fact she does NOT want a school aide (too late, she absolutely needs one), and she desires to be more independent, we're trying again with a strict(er) workout/stretching/TherEx program. But we are starting from now, which is definitely different from last year.

There is still the chance of surgery. Her crouch is pretty bad. We will see if we can make improvements with the strengthening regimen.

She has some goals this year, besides being a good student and continuing her singing; one is making a workout app. I'll spend more time writing about this later, if it comes to fruition. Another one is to make a commitment to swimming throughout the year.


Oh boy, where do I start here? In general, her condition changes approximately every 3 weeks. It sounds impossible, but it's true! Her major seizures have been controlled with medicine since approximately the end of May/beginning of June. We switched from generic Trileptal to Oxtellar (same dosage, same drug, but Oxtellar has a slow-release formula which greatly reduced her side effects) and she takes Onfi nightly. We are now down to less than 2 seizures per month.

As the seizures went down, her "activity" went up; she slowly started, than erupted, in jerks/convulsions at the beginning of sleep (rather than the previous style of seizures, which were in deep sleep) every single time she fell asleep. Sometimes they are only 2 minutes, sometimes these bursts last for 3 hours. Sometimes she hypersalivates, sometimes she hits herself (with her hands/arms, or whacks them against things, including floors) resulting in bruising. Sometimes she wakes up, sometimes I easily wake her, and other times I spend 2 minutes trying to wake her up.

She has had five EEGs this year.

This "activity", at the last EEG (which was at the end of July) did not indicate seizures (!). They have become MUCH worse since then (peaked in Early August) and now, with the idea of practicing what I call "quiet mind" before sleeping ("pretend you're in a field of flowers, and there's a herd of beautiful unicorns, and if you're very quiet one might come up to you and you can pet it") these intense jerks have nearly disappeared.

FOR NOW. Like I mentioned, things with her have been "on the move", and everything 2-3 weeks something is new. With school starting up next week, I expect another eruption of sorts. So we're managing, I guess. My next project involves starting a food diary and making notes related to hydration/weather/activity to see if I can find any significant relationships for triggers. I am keeping my expectations low; I don't think I'm going to find any.


I am trying hard to keep things together. Jason works hard at his job, and he travels sometimes, and he's a deep sleeper. I am a light sleeper, and since Vivian is unpredictable, I've basically been on Vivian night watch. You can imagine how much uninterrupted sleep I get. We finally bought a Sami3 infrared monitor/alarm for Vivian; I'll report on that in about 2 months.

I'm trying to keep our family active and have the kids be kids; they were on the swim team, both went to camps, we went to the beach,  played in the lake/river (check out the instagram feed in the sidebar!) and we just got back from New York. I'm just a little too tired to blog right now.

School starts next week; I have a few other meetings with E's team+teachers before it starts. Vivian has her neuropsychology exam next week (basically, it's an IQ test as a baseline; we've seen some decline since starting her meds. It's not much, but Jason and I both see it, even if her new teacher will probably think she's great). Right now it's a juggle between family, appointments, school prep, and the odd treat for Jason and myself (date night, bike/jog for me).