Surreal

The appointment at Vanderbilt itself went pretty well. We were very calm, Garrett was very quiet and still, and the neurologist was very kind and as down-to-earth as neurologists can be! There was so much information to take in, that we took a recorder and recorded the audio of the whole session. Some information we already knew and some really blind-sided us!

We will know more specifically in about 3 weeks about the DNA issues. The doc said that 999 times out of 1000 boys that present like Garrett do in fact have Duchenne's. If a diagnosis is confirmed, Charlotte and I have to be tested to see if we are carriers. If so, then there is a 50/50 chance she and I could develop serious heart issues. If Charlotte is a carrier, that also means her children would have a 50/50 chance of also having the disease (if they are boys) and be carriers (if they are girls)! Also, if we had more children, there would be a 50/50 chance of them having it as well. The fun never stops around this place! A disease that affects generation after generation is sickening to me!

All this was hard to hear, as I'm sure you can imagine. Its hard as a mother not to feel completely responsible for passing this along to them; that's one of the hardest parts for me right now. I keep thinking that we are going to wake up and none of this will be real. We still are praying that he will be that 1/1000 that do not have it, but are also realistic.

We will be in the process shortly of ordering Garrett a type of hard ankle brace for him to sleep in at night in order to help maintain his feet in a good position for walking.

How you can pray with us:

• Obviously, we still pray for a miracle! That Garrett will be healed and no evidence of disease will be found in the labs
• If my CK blood test is positive, pray that Charlotte's will be negative.
• Pray for the research that is currently going on with this disease. They have a pretty good handle on what is physiologically wrong in the DNA and have developed meds to treat various parts of it. The problem is the mechanism of delivery: they cannot find a means to get the meds where they need it to go in the body.

I'm not exactly where Paul was in his journey yet, but:

"And He has said to me, "My grace is sufficient for you, for power is perfected in weakness " Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong."
II Corinthians 12:9-10