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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.

Friday, May 27, 2011

Visit from the Social Worker

    Today Dake's social worker came for her monthly visit.  She comes to check if the home health groups are doing their jobs to his liking and if there is any changes that need to be made.  We actually have two home health groups. Two ladies come with each group. When we first started to try to get help through the state with Medicaid and we were turned down repetitively.  It was very frustrating and physically exhausting for David and me.  Dake, Phillip, Gracey and myself went to Montgomery and fought the state and finally won.

 When I am by myself  I lift Dake to use the commode but the problem comes in when trying to lift him and pull his pants up at the same time. When he was a senior in high school he stopped being able to put weight on his legs. So from then on we were working with dead weight. In high school, he barely weighed 100 lbs. and we were constantly trying to entice his appetite.  He was on a cancer drug for appetite for about 3 years.....then after 3 years and stopping the drug the weight came....he added about 75 lbs to his already 100 lbs and new problems arose.  Home Health was insistant they were only sending one person. I said, "It cannot be done. This is why were were asking for help in the first place....I cannot do it alone." They assured me they were professionals and could do it.  After about two tries home health understood what I had been trying to say and started implementing two workers. The social worker set us up with two different groups because to bathe Dake and get him ready in the morning is extremely physical  and stress on the body even with hoyer lift and shower chair.  The two groups have been a good idea and I am thankful the social worker thought of it at the beginning.

For the times, I am by myself and he needs to visit his friend "John", I will call my mother who lives across the street to come help me. Or,  if Gracey is here she can help.   Poor Dake he has to schedule an appointment just to visit "John".  My mother has been so wonderful to plan her schedule and live around our needs.  She has been a saving grace for us.

 When Dake was in high school he had fallen out of his chair while in class. He was in driver's education with a bunch of football players.  Lyndsey had walked by going to her next class and saw where he had fallen out of his chair. The football players had worked and stuggled to try to get him back in his chair with no luck. Lyndsey, still in conversation with a friend just stopped picked him up and plopped him back in his chair and left still talking to her friend.  The football guys just stood there with their mouths open in awe. It was great!

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