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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.



Saturday, June 11, 2011

The Dry Run....Rehersal Day June 10th

Friday we went to get Dake's tux fitted. . Prior to Dake's fitting his great aunt who stands all of five foot one and cute as a bug made a deal with Dake.  She teased and agreed to stand in for Dake if he really, really could not be in the wedding for whatever reason.  Dake tucked her info in the back of his mind.
     We entered the store and got his pre ordered tux.  The nice lady instructed him to go try it on in the dressing room to the left. David and Dake moved in that direction and I asked if they need me...David with big eyes and a raised brow quickly answered, "Yes!" So we all three entered a small 3x3 closet. Inside this small square Dake has his chair and I am squished up against a wall on my tip toes, David is hovered over Dake but can not move an inch. We look like a bunch of clowns in a telephone booth. Now we actually have to move. Lyndsey is waiting patiently outside the door in a waitng area. If there were room she would have been ask to come in and help. In the meantime another customer comes in and goes in the neighboring closet to try on his tux.  So David and I begin the process of the pulling and tugging of dressing and undressing. We get his pants on and they pull up slightly below his chin. I roll them three times to his waist, calming down with each roll.   We are bumping and knocking the walls and echoing grunts of pain as Dake says, "I don't bend that way."  We exit our cozy fitting room at the same time our neighbor makes his entrance wearing his new tux. He glances quick as we singly files out of our space.  I see he has glanced our way and I smile and say, "You look really nice in your tux too and smile cordially." He acknowledged me with a nodded but gave me the strange look.  We finished up and left. Lyndsey starts to tell us how neighbor must have perceived the noises coming from our side of the dressing rooms.  The grunts and moans and comments could have been translated in a whole different light if you did not see us go in. The clerk even got tickled. 
     Dake looked so handsome in his tux but he said it was too much work and he thought he would just have Aunt Carolyn stand in for him.  He was joking of course but funny at the time because David and I looked like we had been put in a washing machine on the spin cycle.
(P.S. The shoes fit....YAY!!!!)

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