Wednesday, October 12, 2011

brody's jouney: MDA appointment

Instead of rewriting a long post, I'm going to paste an email that I just sent out to our family and friends. PS...If I forgot to include you on the email, please forgive me! I knew you'd see it here anyway :)

Hopefully this email doesn't just ramble on and on. There's kind of a lot to cover so I'll try to keep it concise and easy to understand haha. Just a QUICK overview for those who are "new" to Brody's condition....

In January Brody was diagnosed with Charcot-Marie-Tooth (CMT) disease. This was discovered after we started seeing doctors and having tests done because of his leg weakness, not walking on time, continually falling down, etc. Over the last year and a half he's been in physical therapy, had 2 sets of leg braces, and been poked and prodded more than any little boy deserves. After ruling out lots of scary diseases, he was finally diagnosed with Charcot-Marie-Tooth. Quick explanation: a neurological disorder that causes damage to the peripheral nerves which causes muscle weakness and wasting, pain, tightening, loss of balance, (all things brody has) and other things that Brody hasn't shown signs of yet.

CMT falls under the Muscular Dystrophy umbrella, therefore our genetics dr referred him to the MDA clinic at Texas Children's. We had our appointment today and met with Dr. Abid. She was very knowledgable of the disease and explained more to us. The first thing she told us is that she wanted to order a panel of tests that would pinpoint which strain of CMT Brody has. (There are like 14 different kinds). However, we've already tried this and our insurance won't pay for costs more than a small car. So the team at TX Children's is working on getting letters, etc together to get the insurance to pay for this. By pinpointing the exact type of CMT Brody has, we can A) determine how progressive it will be and B) determine if Carson and Brooks will have it as well. The disease doesn't always show symptoms right away and can onset later in life. So although Carson seems perfectly fine, he could potentially show symptoms later on. However, we are praying against that!!

The next important thing we learned today is that Brody needs to still be wearing leg braces. He outgrew his last pair last winter and we were waiting for this appointment to get a new prescription. Dr. Abid explained to us how this disease requires constant maintenance. While wearing the braces for a short time can make it appear that Brody is "getting better", by not wearing them his legs go straight back to the way they were. The muscles tighten up again and his achilles tendons get tight and cause his feet to "drop." (They are pointed towards the ground more than they should be and cause him to walk stiff and trip.) Wearing the braces works on correcting this. So we learned that he has to be in leg braces until we hear otherwise..and it could be years of this. She also said he needs to be in physical therapy twice a week. Stretching and exercising work to keep his muscles strong and should prevent the disease from progressing as fast. Lack of activity will lead to muscles wasting and atrophy, causing him more severe symptoms. So although there is no cure, excercise can help keep it from getting bad as quickly.

I feel like we learned a lot more. I know I'm forgetting something. But I think this is all the vital information that I knew those who are praying for us would want to know. I think this was a wakeup call for both Matt and I. We both felt like he was getting stronger and didn't really think about how this is a lifelong battle. I think we probably wanted to block it out..if he seemed ok then maybe nothing was really wrong with him. But she made it very clear to us today that we need to constantly be aware of the treatment he needs and do whatever it takes to "maintain" his muscle strength. Some forms of CMT progress rapidly and others progress more slowly. Since we have no idea what form he has, we don't want to just assume his will never get any worse. And even with the proper therapy, there are still no guarantees it won't progress quickly. So it was somewhat overwhelming to hear that today.

How you can pray for us:
We still believe God can fully heal Brody if he chooses to, so prayer for healing is always apprectiated.
Pray for comfort for us as we process and take the next steps in getting the proper care for him.
Pray that we will not be overwhelmed with the financial burden this is going to bring. Each set of braces costs around $4000. He is growing fast and we know he'll need a new set once a year probably.We will also have to pay about $250 a month in physical therapy. We have full confidence that the Lord will provide so just pray that we will keep that confidence when circumstances may not appear to be working out like we planned.

Thank you all for caring and loving our family! We couldn't do this without all of you!

1 comment:

  1. Larra!!! You have no idea how much I have web thinking about you lately. I have not had an update about you since right after Carson was born. I had a dream about you guys last week. After that, I have been heavily praying for you guys. I am on my phone and not able to read up on everything now, but I'm so glad that Leeann posted about your blog (Brodys blog) on fb. I'll be checking in again soon. Miss you!


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