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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.

Thursday, August 11, 2011

Fifth Grade

      Tonight was Gracey's fifth grade orientation. I cannot believe my baby is going to fifth grade. The fifth grade is a big year and she will begin by starting to go to a new school. She will have a locker and change classes for the first time. Lots of new and exciting stuff.
    My fifth grade year was one of my worst in my school career. My teacher lost her mother and husband both in that year . Children and grieving do not always mix. 
    Fifth grade was a transitional time for Dake.  It was when he got his first scooter. He always told us after his diagnosis that he would NEVER go to a wheelchair.  As the time started to approach that some intervention of help with walking was needed I knew I needed  to give him permission or reassurance it was OK to go to a wheelchair.  He had echoed the statement he would never have to use a wheelchair so much because he was constantly staying positive. But honestly I think he was trying to protect us by denying  inevitable.
      In the fifth grade the time had dreadfully come. He needed some help walking long distances and  maneuvering in the hallways. He could easily get knocked down if he was bumped by someone in the hall or classroom.  He was not emotionally ready for a full wheelchair and honestly I was not either. (I hated
 the first scooter... but relieved to have it at the same time.) We talked about how cool his new cart was and how fun it would be. He adjusted well and was relieved to have the stress of walking the halls lifted.  Mrs. Tucker was an amazing teacher and she was very adjusting too. Luckily his best friend Phillip was in the same room that year. Phillip was fascinated by the mechanics of it all.  They were planning to "soup" up his ride on a 10 year old level.
 All in all Dake had a very successful happy fifth grade year.

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