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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.

Tuesday, January 17, 2012

Dake and his friends get a way for a weekend.

Lyndsey and Dake and their friends, (Perry, Phillip, Evan, Miranda and Clint) headed to the beach for the Gulf Coast Getaway in Panama City Beach. It is a yearly thing on MLKing weekend. Dake looks forward to this trip all year long. It is a Christian retreat for young adults.
This year he was all ready to go but he had to put a hold on his plans. On Tuesday before they were to leave on Friday Dake had to go to his pulmonologist because he was having a cough making it hard for him to breath. He was having to do more breathing treatments to be comfortable and his cough was not getting better. He asked to go....(This never happens and usually begs me to hold off when I suggest going).Dake up to this point has not had any pulmonology issues.  The doctor was definitely concerned and gave him a steroid shot immediately and ordered a chest xray. He also said if the xray was not clear he could not go. He had reservation about him going without a nurse or doctor traveling anyway. I told him about the people going and he agreed if the xray was OK he could go as long as he had responsible adults who know how to handle his situations accompanying him.
    The next day we found out his xray was clear and he could go. He was so excited. He packed two days early. Plans were still own and now mom need to learn to breath. David and I were headed in a different direction with Gracey to a a gymnastic meet.  I must admit I drove everyone crazy who had a phone checking on him. Everyone was nice and said it was fine but I know I was a nuance.  This trip was hard on momma being away.
They had a wonderul time.  He had to had treatments every night but everyone handle the situations beautifully.  Wonderful friends are awesome.

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