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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.

Thursday, June 28, 2012

First  Night In New Orleans

The  first night Dake slept  very little.  So that means David and I slept very little….especially  David. Dake just could not get comfortable.  We brought  all his pillows and all the sound  machines but nothing worked.  David and I repositioned him at least 20 or more times that night. All of the above equals  very grumpy, ill people. 
Upon getting up the next morning, we had plenty of  ugly, grumpy banter  flying  around. Spirits were down  and we had not even started our day. We headed to breakfast after my we gotta get it together speech….(which usually does no good when the sleep deprived  are my audience.)  Remarkably, after  a little  food in our  bodies  and  reviewing the schedule ahead, we seemed to shape up.

New Orleans,  The Swamp Tour

Lyndsey had a swamp tour for us and had called ahead and checked the accessibility beforehand  so we would not have any unpleasant surprises.  This tour was family  owned business and the first impression  gave us that feeling of a personal touch. It felt like when you were a kid going to church camp. At least a  camp you have been to for years. It was a good warm feeling with all the familiar smells.
       We board the pontoon like boat with no problems or trials….so we were all happy and ready for the journey ahead. We were all hoping we would see an alligator and exchanging  exciting banter with each other and the other passengers.  The boat held about 20 riders.   Our tour guide was  a Louisianan  of French  decent whose family exiled  from Acadia, which is present day Canada.  His grandmother was  an Acadian  Indian and was a major part of his raising.   He was rugged and rough around the edges . His accent was as thick as the murky waters ahead.  His school career was limited  to  third grade . But we would soon  learn we  would  learn more from him than we would  ever  image…His classroom was the bayou.  He told us he was offered a job at New Orleans University as a professor In History of the bayou.  (A course I would definitely love  to  enroll.)  He turned it down because he would have to live in the city because his home is in the bayou!
As we cruised down the waters, our  new Cajun friend  calls out a name and clicks his teeth out the side of his mouth . The “call” was like the friendly request one would use  to  retrieve your  family dog. We all are looking with great anticipation . Out of the murky waters a couple of eyeballs popped up . Slowly, the eyes glide toward  the tour guide’s end of the boat to reveal her bumpy, long, rough looking  body…..
To be cont’d……

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