Skip to main content

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

Comments

Post a Comment

Popular posts from this blog

WE'RE ADOPTING!!

Bah! I said it…er wrote it…out loud. There it is, in black and white for the world to see. (Pause for a drink and a breath) Matt and I are in the very early stages of planning to adopt. We have had a few meetings with an adoption agency, we are gathering the necessary information, and we are making plans to get this ball officially rolling SOON. It has been a very long and winding road to get us to this point, and honestly I never thought we’d get here. Adoption isn’t what we started out hoping for. It isn’t where we thought we’d end up. But here we are – gearing up for what will surely be a life-changing experience for us with hearts full of hope and excitement. The topic of adoption has come up in the past, but we quickly dismissed it for one reason or another. Matt and I have had our fair share of insecurities about whether or not adoption would be a good option for us. Who would look at our family profile and pick us?? It was a burning question that we probably still have ...
5 comments
Read more

I may as well tell you...

I had a miscarriage. I’ve debated for weeks whether or not to acknowledge it publicly. It’s such a personal thing…and this is such a public medium. But a few months have gone by and I’m no closer to feeling ok about it and truly nothing else on my mind really compares, so here I am, letting the world in on my secret. Over the past few weeks I’ve found very little comfort in the fact that only a small handful of people know about the miscarriage. It became nearly unbearable this week, during all our wonderful family Christmas celebrations. Being surrounded by so many people who love me and support me and have no idea how my heart has been broken – it’s a lonely place to be. Not that I would want them all to bombard me with pity or questions or sad looks in their eyes – I realize I can’t have it both ways. But a little acknowledgement goes a long way and I simply can’t ignore or deny the fact that something major happened in my life and impacted me, impacts me still.   It was a ...
4 comments
Read more

Carrie Anne - The Beginning of the Story

So, I’ve been trying to sort out how to start this story. It’s been difficult to articulate. Difficult to pick which details to share, and which to hold close. But it’s a story too good, too beautiful, not to share – so here goes! When Matt and I first became parents, we thought our family was complete. We envisioned raising Ethan surrounded by loving friends and family – just the two of us. Given all that we had gone through to finally become parents, we felt content with just the one child. The most adorable boy in the whole wide world. Our Ethan was the apple of our eyes – the most amazing gift. We marveled at all of his accomplishments, soaked up all his love and personality, and celebrated the joy of parenthood at every exhausting, wonderful turn. Along the way, we’ve built a strong and loving relationship with Ethan’s birthmother. We visit yearly, and stay in close contact with pictures, emails, and texts. I have attempted to describe my feelings for her many times over the...
1 comment
Read more