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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.

Sunday, August 14, 2011

One Month Passed!

  Tomorrow Dake goes to the doctor locally for his first month's check up since he started the research program.  We were able to work with Johns Hopkins to have a few of his check ups done locally so we did not have to fly to Baltimore every month. This will help us so much physically and financially.  I have to remember to take all the paper work and info because Johns Hopkins covers all the charges even here at the local doctor. I tried to call ahead and let them know the situation with billing but that is like speaking a foreign language when I try to explain everything.  So I am going in and try again face to face.....I know I can draw picture if needed.

 The symptoms I want to check out most is his headaches and swelling of hands. Both symptoms are better but need to have them documented. And against Dake's wishes, I will feel better just having him checked out for those things. Dake would rather just skip that part and not mention it.  But sorry Dake...Mom Rules on this one.
He has a pulmonologist appointment on Wednesday. This is going to be a busy week. School, Doctor, Gymnastic, etc.....Whirlwind....Crazy!

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