Monday, May 10, 2010

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

6 comments:

Amy Edwards said...

Just wanted you to know that Chanch and I are praying for your sweet family and we've asked our small group at church to pray too! I'm so thankful that the Lord worked out a way for Garrett to get in early at Vanderbilt. What an answer to prayer and confirmation of His will for you!

We will continue to trust God for His best for Garrett!

Robyn said...

Praying for 1 in 1000 and a negative for Charlotte!!

Me said...

Shawn and I are praying.
Love,
Heather

mama said...

We will never give up praying for healing.

Shelley said...

We are praying with you!

PattyDawn said...

I am still praying for you all! As a mother, my heart is broken for you! I cannot imagine the fears and apprehensions that you must be feeling! Keep trusting in God - He sees it on the BIG screen!