Monday, October 4, 2010

The Journey Continues

This past Friday, Oct 1, we went back to Temple for our first follow up appointment with Dr. Blazo, the genetics doctor. On the drive over, Brody kept practicing her name. It was so cute. He wanted to be able to say "Hi" to her when she came in the room. So at 11am when she walked in the room, he stopped playing with the cars and excitedly said "Hi Dr. Blazo!" He was so proud of himself.

We talked first with Dr. Blazo about the results of the tests they had done at our appointment 2 months ago. I can't believe how fast that time flew by. In the last post I didn't go into detail about they tested for. But, since both test results came back NEGATIVE here's what they were: Spinal Muscular Atrophy (SMA) and Charco-Marie-Tooth, 2 types of nerve diseases (as we understand it). We were overjoyed to hear that the SMA test came back negative. That one seemed to be more of a serious condition. And of course we were still relieved to hear that the CMT was negative as well, although that one seemed to not be as serious.

So although we had good news, we were left with no answers. And Dr. Blazo even said this. "I have to be honest with you. I don't know what is going on and think he needs to be seen by a neuro muscular disease specialist." She said that there are specialists who only work on diagnosing patients with rare neuro muscular diseases that aren't showing up on the usual blood tests, which seems to be what may be going on with our Brody. She said she wanted to get on the phone with the neurologist and talk some options over with her since we didn't have an appointment with her that day.

We waited for a while in the room and she came back with good news. She said that Scott and White had actually just hired the exact specialist we needed and we would not have to go to Houston, unless this doctor recommended it. She also said that she and the neurologist agreed on some other testing that he needed. Testing that they were trying to avoid. An invasive painful procedure that will require sedation. But doing this test should tell them what area to focus on, either the nerves or the muscles.

The test will send electricity through Brody's arms and legs, and based on the way the nerves react, they would know if its a nerve problem. And if the muscles react a certain way, they'll know its a muscle problem. It seems that since the last 2 tests were negative, they feel this is the best way to send us in the right direction. Without it, we could waste a lot of time (& money) testing for the wrong things. And seeing how long it takes to get results, we don't really want to waste that time.

While he is sedated, they are also going to do a spinal MRI to make sure there isn't anything blocking the signals from being sent from his spine to his legs.

AND...they want to do an echocardiogram on him to make sure that his heart looks fine. If its a muscular problem, there is a chance that it could affect his heart since his heart is a muscle. So although is heart sounds great, they don't want to overlook anything. We are setting this up locally with Dr. Ransom.

So over the next month, our little guy is going to go through a lot. Lots of testing. Lots of things he doesn't understand. He has been such a trooper through all of it. I can't even imagine having to wear these uncomfortable leg braces, constantly going to doctor appointments, having people poking and prodding at me constantly. But he takes it in stride.

There's more to this exciting part. We talked about therapy with Dr. Blazo as well. She said he needs to be in some sort of therapy at least once a week, even though we have no diagnosis. She highly recommended hippotherapy, also know as therapeutic horseback riding. I've always heard of special needs children riding horses, partly for physical rehabilitation and also for the peaceful side of it. But I never thought of it being something that would help Brody. Dr. Blazo explained how it requires them to use their hips to balance and they have to use their legs to squeeze, kick, etc. I rode horses a lot when I was younger so it all made sense to me.

So we're checking into a couple of places around town that provide riding lessons as well as work with him as therapy. We know that he's going to be scared at first. He likes big animals from afar, but up close he's not a huge fan. But I really think that if he would give it a chance he would really enjoy it. A lot more than the physical therapy we attempted.

So these are the next steps. Hopefully we're getting closer to learning what is going on with our Brody Boy. We are continuing to pray for complete healing and we know that God can do anything. We know he is going to use this for His glory, whatever the test results show.

1 comment:

  1. Sweet Larra, we'll continue to pray! What a precious boy he is! Thanks for the update. We love you guys!


Thanks for leaving us a note! We love hearing from you!