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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.

Wednesday, November 30, 2011

Thanksgiving has come and gone....2011

Our Thanksgiving came and  wonderful family came with it. Most of the family was able to come except for few who were missed dearly.
 . My daughters and nieces and I strategically conquered "Black Friday"! We started at midnight and went on though till late morning on Friday.. We watched the sunrise from' Michaels' parking lot..( awesome) I loved spending mad crazy time with all the girls. Fun!  You must only tackle Black Friday with a team....
Dake's little cousins enjoyed riding around on his foot pedal of his chair. Gracey use to ride all the time but seems to have outgrown it. Dake enjoyed Adelaide and Vivienne bringing back the fun. We played the old favorite games like 'Scrabble' and 'Apples to Apples'.  These are a traditional ritual with our family. We added a new game (at least for us)...'Buzzword' mix. With the movies, conversations, games and eating, Dake held up fairly well with our family of night owls.  After having a few breathing incidents that happened a few days before I was concern he would wear out faster.
      Dake had back to back breathing treatments just days before Thanksgiving. The Tuesday
    before the Thanksgiving Dake had a moment before bedtime he could not catch his breath.   
    We gave him a breathing treatment with his nebulizer and he seemed to be relieved. He wanted   
    to immediately go to bed because he had worked so had to breath well he had tired himself. He
    went on to bed and around 1:00 a.m. David came and got me and said Dake could not breathe. 
    I could not get the medicine in the machine fast enough. Dake's eyes still haunt me. Thank God
    the treatment eased him and he was able to breath. He was ready to go back to bed as soon as   
    he felt better. I must say going back to sleep was harder for David and me,

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