Total Pageviews

Welcome to Dake's Blog

This blog is designed to give you updates on Dake as he enters his journey to Johns Hopkins/Kennedy Krieger Institue Center in Baltimore, Maryland. This is a clinical trial in research focusing on the heart of Duchenne Muscular Dystrophy patients. This is not a treatment, it is research. Dake chose to participate in hopes for himself and for those who unfortunately follow behind him.

I will also share a little into our lives. Dake wants his story told....

The good, the bad and the ugly......

For more information on the research at Johns Hopkins on Duchenne Muscular Dystrophy scroll to bottom of the blog.

Thursday, October 13, 2011

Fender Bender....AND....and....

We started our journey to Johns Hopkins today.  We flew out early  and landed in Baltimore to discover the airlines managed to crack and chip the fiberglass body of Dake's wheelchair base. We brought it to the clerks attention and she said we had to go to baggage claim and file a claim at the baggage office. I knew we were on a limit time schedule but also knew it had to be filed immediately if we had hope of getting it fixed. We were able to get it filed  fairly fast and we were told we would have to wait for the central office to call. (This code for it might get looked at but it might take a year.)

We had a little panic moment with the shuttle when the man told us they canceled the van for a handicap rider.  We said no we made a reservation days prior to flying....He rechecked and found he had overlooked our reservation.  Sigh! Whew! and all those relief sounds one makes.

We made our appointment and the doctor wanted Dake's weight. They have this special table that we lie Dake on and it weighs him lying down.  Phillip put Dake on the table and the it registered Dake had a 22 lb weight deficit. Phillip and I looked at each other and we simultaneously looked at Dake and all laughed. The nurse insisted the reading was right.  Phillip and I, who lifts Dake regularly, both said, "Uhhh...NO Way!"  After weighing him again on the same scale and got the same reading we insisted it had to be wrong. Finally they took him to another scale and the result was he had lost 4.5 lbs....which sounded more like it.  Dake said he liked the first result better but I was very proud of him with his 4.5 loss. 
   The doctors continued their evaluation.  At the beginning of this study, 3 months ago all the test were done as a baseline. One test they perform  is a hand grip test. The test is measured on a number scale with the highest number means  more strength involved.  Three months ago Dake's right hand grip test was 4.6 and today his right hand measured 5.8!  His left hand 3 months ago measured 3.8 and today his left hand measured 5.0!  The doctors were so pleased but it did not compare to the joy we all felt.  This is showing a growth in strength after 3 months.  Dake's strength difference is too small for us to see yet in our daily lives with but shows the future has amazing possibilities......We can not even begin to express the first hope we have had in years. Thank you God!
It has truly been an awesome day!!!!!

No comments:

Post a Comment