Saturday, July 30, 2022
Wednesday, August 7, 2013
Back to school night
Sent from my iPhoneMadalyn is a little sad about repeating first grade. But since she is doing much better than she has for the last 24 months,I think this repeat will be very constructive for her.
She's asking questions, and has more meaningful conversations every day. Several times she's asked "do you think I'll make it to second grade this time?". She says it with such innocent sincerity, it hurts my heart... But just knowing she is thinking clearly enough to pose the question makes me know she's going to have a better year.
Of course I tell her she will go to second grade next year! The IEP means I can make that promise! But I do believe she will make it on her own!
Her current seizure medicine appears to be working as good as her first seizure med did. That was THE medicine she started in K-5 that made her dry every night, and gave us 3 glorious weeks in China with no meltdowns, or hyperactivity. Life was great until she got the Lamictal rash and had to stop it. Since then she was wet every night with periods of severe meltdowns, hyperactivity, and cognitive decline.
But since starting Oxtellar in May, and then tweaking the dose last month, she has been dry 14 nights, which is attributed to the medicine controlling things at night (we assume spiking or seizures cause night wetting because it always responds to medication increases/changes). And we finally achieved the same result we did 2 years ago, which is since she is dry at night, she is also doing well behaviorally and cognitively.
I know first hand now why folks in the epilepsy world say "there's no such thing as the perfect seizure medicine..only the best one for the person for that particular time period"...so I'll just be thankful for today and try not to worry about next week, next year, or her teens! Ha
Friday, July 26, 2013
Saturday, July 20, 2013
Thursday, July 4, 2013
Wednesday, June 26, 2013
Cast off-Bilateral days
As expected, Josephine gained a lot of awareness and strength, but did not gain the ability to open her hand. We will continue to work on this at home, and hope to repeat the 4 week program again next year!
Over the last 4 weeks, she worked hard, and didn't seem to mind the cast at all. In fact, each time we took it off for a change, she was eager to put it back on. She even said "thank you, Reggi", as Reggi slipped it back on. Today, Reggi had to hide it because Josephine wanted to put it back on. Pretty funny! But, once she got used to it being off, she enjoyed being independent again. She ate supper, played with toys, all without me having to hold the items in her little fist......
Today as soon as the cast came off, Josephine began opening and closing her left (unaffected) hand and saying "open close open close". It was as if she was showing Reggi she CAN do this....and she knows what Reggi wants......with her left hand......and she wants to do it with her right hand, as we keep requesting of her.....but she just doesn't have the pathways from her brain to that hand...yet....
The best way to help her develop those pathways is to place her in weight-bearing positions to increase strength, as well as continue to get her to reach and push/pull with her arm as much as possible. Hopefully, hand function will follow.
But, as I always say....regardless of her progress, she will be able to do everything she wants in life.....one handed, or two.....this therapy is just to give her the opportunity to gain as much function as possible.
I'll update more after the final testing, which is Friday.
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