Wednesday, March 9, 2011

Brody Update

Its been a while since I've updated about the latest with Brody. The last thing I mentioned here was the MRI back in November. Since then we've definitely gotten closer to an answer.

In January we went in for a  Nerve Conduction Study and Electromyography (EMG), as well as a brain MRI. This was the scary test that I was dreading for him. The NCS and EMG were tests that sent electricity through his body to test the response of the nerves and muscles. Fortunately he was sedated again and had no idea what was going on. The EMG, which tested the muscles, was normal; meaning the muscles are functioning properly.

The NCS, however, showed reduced nerve response, meaning that he has a neuropathy, a disease of the peripheral nerves. So this test ruled out all muscular problems and narrowed it down to a nerve problem. However, since the nerves tell the body what to do, the muscles in his legs are weak because the nerves aren't sending the signals fast enough to tell his legs how to step and function correctly. (Have I completely lost you yet? Believe me, it has taken us MONTHS to really comprehend all this stuff!)

Having this information really helps the genetics doctor know what direction to head in the testing. Early on we did a test to rule out the general form of Charcot-Marie-Toothe, the common name for most neuropathies. However, there are 14 kinds of CMT. We met with her today to discuss the next step in testing and she explained the ones she'll be testing for next. Of course, the testing is extremely expensive so she will be getting letters from other doctors to persuade the insurance company to pay for the tests. Nothing is ever easy.

Her next recommendation is visiting the Muscular Dystrophy Association clinic at Texas Children's in Houston. They have specialists in pediatrics who deal with these type of cases who will be able to work specifically with Brody's condition and help get us on a therapy regimen that can continue to strengthen his legs.

There is no cure for any form of CMT. It's something that Brody will have to live with his entire life unless the Lord chooses to take the disease away. However, it is not life threatening and ultimately, that's all we needed to hear. We can help him get stronger. We can overcome obstacles. He may not run as fast as others. He may not be able to do everything other people can do. But that's ok. We are going to do all we can to help him overcome this disorder and have a full life.

Because this is a genetic disorder, there is a 50/50 chance of passing it to our other children. So far, Carson has no signs. And we're praying for the new baby not to have this as well. But if so, we'll be prepared and believe God has a reason for everything.

We don't know what the future will look like on this journey.  I'm praying that God will strengthen us through this and will use us to bless and encourage others who may face something similar.


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