We have been working through the medication changes as best we can. There are some good signs and some concerning signs with the change; all of which was to be expected.
Corey has shown signs of two simple partial seizures, delayed speech, sudden onset of imbalance and on occasion, Corey drags her left toe as she walks. In addition, the changes plus the weather is causing some painful headaches/migraines. These developments are not permanent and the medications will continue to be tweaked as we try to find the right cocktail mix. Unfortunately, they need to titrate each new medication dosage up and withdraw the old medication down. She can’t just discontinue any of her medications cold turkey. It’s a slow process that we hope will give Corey the balance she needs.
The medication side affects are unfortunately affecting her PT/OT the last two weeks. This is causing concern for the usual reasons; we are hoping for continued approval for both therapies based on her progress from the botox shots. We’re seeing the botox take affect this week but with the medications it’s counteracting the positive affects and she’s more fatigued which is affecting her participation. For those of you gasping “UGHhhh”…I agree! This process is slow, painful and there are days this is maddening. On a positive note, we are NOT seeing tantrums hourly. Now we can count them daily! They’re not gone by any means but daily is a huge improvement from multiple outbursts hourly!
Tonight we attended our 2nd cooking class; Savory and Sweet Crepes. Chef Michele taught us how to make each type of batter and Corey (along with the other students) practiced their “swirl”, flip, fill and fold techniques. We learned crepes are not just for breakfast or dessert! They sautéed onions, mushrooms, fresh thyme, fontina and parmesan cheese to fill a crepe purse tied with a fresh chive. Corey also made Ham and Brie crepes; Smoked salmon, mascarpone cream cheese and chive crepes; and for dessert, her favorite, Nutella and Banana filled crepe served over Creme Anglaise (the foundation for vanilla ice cream) topped with fresh whipped cream.
I hope as we practice her new culinary skills, her homework tastes as good as her classwork! Bon Appetite xoxo