Overall, we feel like Evelyn's been doing pretty well, lately, and that we're seeing some significant improvement from the ketogenic diet. Her seizures come much more clustered now, which makes for a rough time while they're occurring, but gives her much more "non-seizing" time throughout the day when she's very alert and we can work on development. Lately, we're seeing about 7-8 clusters per day. Of those, most seem to be 5 or less individual seizures per cluster, but there seems to occasionally be one or two rough clusters of 15-20 seizures; typically around 6:00pm (I get cranky around then, too).
The hardest part, lately, has been at night - Evelyn's still usually up at least once in the middle of the night with some seizures, but in 3 out of the last 5 days or so, she was up 3 times, so Kim & I were both kind of running on empty headed into the weekend, here. But - it's the weekend. :-)
We're also seeing that she's much more "aware" of her seizures. Which all the therapists & doctors tell us is a good thing - it means Evelyn's "with it" and "present" enough to know that "something's going on that shouldn't" - but it can kind of break your heart sometimes. Typically, with her "longer" clusters, she'll cry out and/or start crying during each seize, which can really just kick you square in the gut. But then it's absolutely amazing to see how quickly she can bounce back once the cluster's over.
One more bit of seizure-related good news: In conference with Evie's neurologist we have decided to start taking Evelyn off of Klonopin. This is an anti-convulsant / relaxant that whose effects are quite similar to Valium. It is a slow reduction process; thankfully she's on a teeny tiny dose - but she'll be done on Christmas day. This should provide her with a bit more awareness, alertness and perhaps more muscle control. Of course the weaning process is the likely culprit for these sporadic sleepless nights lately. :)
Evelyn's physical therapist has said she's been seeing some marked improvements in the past few weeks, particularly as far as head control goes. Evie still can't hold her head up on her own for more than about 30 seconds, but we're hopeful that she's working her way toward full control. :-)
In general, the "dust is still settling" from the move, but it's settling, nonetheless. Kim & Evelyn might actually drive more miles per week than I do (which given my commute to midtown from Lilburn is no small feat!) - twice a week, they head over to therapies in Alpharetta/John's Creek. These will eventually take place at our home (which will be nice), once we finish buying & moving. We opted to "do it the hard way" in this interim period to maintain some level of continuity with therapists, so my aunt & uncle over in John's Creek graciously offered the use of their home for the therapy sessions until we get settled into our place over there. Then once or twice a week, Kim & Evie head downtown (midtown) to the aforementioned-CVI for therapy and the BEGIN program. It actually works out pretty nicely, as I'm working 2 buildings down from the CVI, so I can usually meet them for lunch. :-)
As noted, we are hopefully very near to closing on a house over in Alpharetta. We had a pretty hard-to-meet set of criteria for a house there:
- We wanted the Alpharetta area (and a specific subset of that area) for some schools that have excellent special-needs programs & resources
- We wanted a single-story house, just in case Evie doesn't end up walking well (most places in north Atlanta are 2-story, owing to squeezing more square footage out of the uneven terrain)
- Of course we had some price-constraints :-)
Anyhow, that's about the latest. Apologies again for the slacking in posting - and apologies in advance, as it will likely continue to be a bit sporadic until we've completed the final leg of this move - but thank you again for your continued interest in Miss Evie. :-)
1 comments:
OK, waiting for photos patiently! :)
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