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Tuesday Update: 01/13/09

Yesterday Matt and I met with Dr. Struck for his regular follow up on his tremor etc. She told us about a new drug which just received FDA approval this past October to treat any kind of involuntary movement. She’s had quite a bit of success with several of her other patients…one of them she said it was like a miracle for…it reduced his movements by 80%! This was very encouraging, naturally and we are excited to see if we can give this drug a try to help Matt’s tremor. HOWEVER, the cost may be an issue. The primary use of the drug so far has been Huntington’s disease, which the FDA considers an ‘orphan’ disease in that it impacts less than 200,000 American’s per year. Because there are relatively few people with the disease the cost of the drug is outrageously expensive…upwards of $50 per PILL!
Dr. Struck and her team went to work right away to try and work with our insurance to see if they’d cover part of the medication. They were rushing around filling out forms, and Dr. Struck dictated a letter on Matt’s behalf noting his age and uniqueness of his situation, in hopes of reaching someone even ‘sort of nice’, she said. So, we’re anxious to see if we’ll be able to give this new drug a go or not. If it could really reduce or alleviate Matt’s tremor…oh, it would be so incredibly wonderful!!!!!!!!!!!!!!! She did think his tremor seemed a little improved and his control of it to reach and shake her hand was good. They went ahead and did 2 more injections of Botox, as that did help the tremor some last time as well. That usually takes a few weeks to be effective, so we’ll see how things go.
This past weekend we had another nice weekend. Saturday I went up to Hope and Chad’s to hang out. Mom was in town visiting, helping Hope around the house after she had a minor surgery. Meghan was excited to have Aunt Emmy come over and help ‘bake’ cupcakes in her new kiddie cupcake maker thingy. We donned our aprons and went to work creating what I’m convinced is a toxic cupcake. Just add water to a mystery powder, and microwave for 30 seconds…then poof – cupcake. I think there is something very wrong about a cupcake that bakes in 30 seconds…that can’t be good. It’s like creepy space food and I could not bring myself to try it. Regardless, we had fun going through all the rigmarole of mixing and pouring and ‘baking’ and then frosting in this crazy squish-the-frosting-through-the-tube contraption that I’m sure was a pain for Hope to clean. Meghan had a ball…but I kind of scratch my head at the whole process. I can’t help but think it’d be a lot more fun to actually mix, bake, and frost real cupcakes…but that’s just the old fashioned woman in me. All that matters is the fun we had doing it…and with smiles like these, how can you refuse. I tell ya…those kids…I just love them so much. I know that soon they won’t fight to crawl all over me at the same time with that gleam of we’re so excited you’re here in their eyes, squealing in my face, giggling, squeezing, and kissing me. I delight in every ‘AUNT EMMY’, every snuggle, every tickle, every goofy smile. How could I possibly love them any more than I do?
While I was up in Roland, Jay was over hanging out with Matt. They hadn’t had one of their guy’s nights for a while, and Matt was really looking forward to it. They had pizza, watched a movie, and did whatever it is that guys do when they hang out. I have a feeling a lot of BSing – knowing Jay like I do!
Sunday we had a low key day, catching up on old Sopranos DVDs we got for Christmas. It’s always so nice to just have a down day at the end of the week and the beginning of a new one. I look forward to the time alone with Matt just relaxing in our home – together

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