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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.



Monday, June 6, 2011

Shoes for Dake

         We went to find Dake a pair of black shoes.  Actually, these shoes are back up shoes for the wedding. Dakes feet are really hard to fit. I am afraid the tuxedo company shoes will not fit him. His feet are extremely flat and wide.
    When he was in the fifth grade, Dake starting walked on his toes because his heel cords became so tight. We did physical therapy with him everyday sometimes more than once a day to prevent the tightening.  The therapy really does not prevent the heel cords tightening but hopefully slows it down.  
    At age 12, he had an operation to release his heel cords to help him walk again on his feet. Dake did great with the surgery and even with walking cast for six weeks. But when the casts came off he did not do like most boys after this surgery.  Dake had extreme difficulty walking after this surgery. Dake said his legs felt like jello.
   David and I attended a Parent Project Conference for DMD in Pittsburgh, Philadelphia.(This conference were set up to hear researchers and doctors discuss research and obstacles in finding a cure for Duchenne.) I was fortunate to talk to a doctor from Beth-Israel Hospital. This orthopedist who did this procedure regularly on Duchenne boys. He explained that about 1 in 1,000 boys re-act like Dake. He said they do not know why, but that it does happen some. (In regrettable hind sight, we would have just left him walking on his toes instead of this alternative. But we were trying to do what we thought was best for him.) (Parenting is hard especially when you have a sick child.)
     Dake did continue to walk some with braces (but seldom without) and he was using a scooter on and off after this time. The scooter was becoming increasingly easier.  We tried to prolong the use of the scooter as much as possible because once he stop using a muscle he would lose it forever....so we were trying to put off using the scooter constantly to keep his muscles working.
   We found a cheap pair of shoes that will fit but they are definitely only if we have to use them kinda shoes.  It will be better than black socks.

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