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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, July 13, 2011

Started the Day with TESTS!

Dake arrived early to Johns Hopkins.  He started the day off with tests. His first test was a pulmonary test called a Forced Vital capacity...It is when he blows with force in this instrument to check how his lungs are working. Then he did the Pincher and Grip Test. This test measures his muscle strength in his hands and arms ...then an all over physical was done as well as an all over muscle assessment. .   At 9 o' clockish he went to get a Flow Mediated Vasodilation (FMD) ...this test is an ultra sound of the main artery in his left arm going to his heart. They are checking the dialation and flow of blood in this artery.. Then the ever famous urine test was done.  Following the above test the neurologist had a CT of his abdomen to check for fluid on his stomach. This is not part of the research but the neurologist thinks his stomach maybe collecting fluid and she is checking to make sure  . David said the only thing they would find would be "hamburgers" in his stomach....

The cardiologist came in a discussed what was ahead and what he has seen so far.

We answered a several page questionaire about his daily life.  He finally was able to eat at 2:00 pm today....He was more than ready.

The very first pill was given to Dake at 2:00 pm.......It has begun.......!

Dr. Leung who is doing her fellowship in  neurology came in about 30 minutes after he took his first medication and ask how he was feeling..????  Dake replied, seriously,  "I believe I can get up and WALK!"  He said, "It works, it works!"  She does not know Dake's sense of humor....Her expression was priceless.....She finally realized he was teasing and laughed.  It was too funny. 

Now we have more waiting to make sure everything goes well.

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