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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, July 23, 2012

Still waiting and Lyndsey's birthday

            Today is Lyndsey’s birthday (27) and we are still waiting on the cardiac MRI equipment to be fixed. It has been a bummer kinda of day waiting and hoping we could get called with good news. They only calls have been “not yet” or “can’t get it fixed” .

 The new used joystick is on it’s way and should be here around 2 ish toomorrow. Pray this works.  Getting the 357 lb chair to the airport will be a major challenge. We currently have Dake in a chair we bought at a Rite Aid drug store for $220.00. Dake’s poor body is having a hard time adjusting from a $36,000.00 wheelchair to a $220.00 wheelchair. He is sore and has no control so his spirits are low. (At least we are thankful it is only temporary.)

The last call was from the research coordinator saying they have found another place to do the cardiac MRI at 7:30 in the morning. Woo Hoo….at this point we would go at 3:00 in the morning if need be.

 The only flight we can take is at 8:25 pm tomorrow night. So we will be here a little longer but home is at least in sight.

We all need Snow White and the Seven Dwarves  t-shirts  labeled “Grumpy”. Attitude adjustments needed.

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