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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.

Sunday, May 22, 2011

Settled In Our Room

We have gotten settled in our room. The flight here was over all fairly pleasant. Dake had some comfort issues but did ok. We were placed in the back of the airplane which created some obstacles. (Usually, we are placed in the front or close to it.) The main obstacles came once we got to Baltimore. When a wheelchaired flyer, who has no mobility, the airlines will have them transfer to what it called an aisle seat. This is a narrow seat with wheels with no sides to help you get down the aisle. The fact, it has no sides is where we had problems. Dake has lost most of his core strength and needs assistance so he does not fall over if placed in new seat. Because the aisles are so narrow on the plane means no one can hold on to him. When we got to Baltimore we waited until everyone departed the plane. This young man who barely could speak understandable English came in with the chair. David placed
Dake in the aisle chair and we put the seat belt on. The seat belt for his legs did not work and Dake's legs flopped open hitting the airplane seats as he started out. David held his legs together and slowly backed out with the assistant. The young man must had a hard time understanding English or maybe Southern English because as he started to move Dake's arms would fall down causing him again to hit the seats as they moved. He kept telling Dake, "Hold your arms!, HOLD YOUR ARMS! " We tried to explain but the comprehension was not there. So I grabbed all the luggage and David alternated holding his legs and arms and we slowly departed off the plane. Poor David's back. Poor Dake.
When we finally got to his wheelchair we noticed the side lateral support was bent in and not at all where it was suppose to be. We had just purchased these and the cost was around $600.00 each. We bent it as much as we could to get him in the chair but it was causing a pinch for him under his arm. David and I think we can fix it but we need a metric allen wrench. (we normally keep one in his chair backpack but because we were going to have to go thur security we chose to keep it at home.) Knowing our transportation will be limited we will have to figure something out. After getting to the room several hours later David was able to bend it enough without having it pinch him all the time. At this point Dake is really tired.
Dake was somewhat agitated and beginning to get grumpy. (understandably so) We finally got to the room and he laid down to take a nap and was extremely restless. We were constantly adjusting and turning him. I hope that is not a reflection on the tonight's rest.
We have eaten at the hotel and returned to room hoping for a restful night..The Johns Hopkins shuttle will be here bright and early. Please pray he sleeps well because he has a full day of test tomorrow.
We heard from Gracey thru an email and she said she had had two cupcakes already and staying busy. Sounds like Galou and Pops are doing an awesome job. I am not calling her tonight because it will upset her as we get close to bedtime...I know it will upset me at least.


  1. Thank you, Lin, for keeping us updated. I am thinking about your family and praying often. Tell Dake that I say, "Hello!". We love you all! ~Sarah (Cunningham) Housley

  2. Thinking about all of you! Dake, I think you are a very brave young man to participate in this study. Thanks for sharing your experiences with us. God be with you all.
    JoAnn Burch