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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, June 27, 2012

Catching Up!

It has been awhile and it is time to catch up……..

In May we decide to take a quit break and we headed to New Orleans. My niece Brittany joined us which is always fun having her on our adventures. I booked the hotel but  Lyndsey  planned all the events and adventures which made it so nice for David and me.  We stayed in the Arts District which was a happy surprise for me. When I booked the place, I did not realize it was in the Arts District…(honest). We stayed at the Embassy Suites to get a room with extra sofa bed. This should add to the comfort and easement of the stay.  We arrived and a bell hop meet us as thou he was expecting us personally.  He stayed with us as we were getting our room keys. He notice we did not have a handicap room. (Rarely do handicap rooms come with two beds but one and of course we need two beds and the sofa bed so we figured we would figure it out when we saw how things were laid out.) He told the desk clerk that we definitely need a handicap room and fix it right away. WOW, never ever has anything like that happened to us. That someone other than our group make a point to help with the handicap details. Of course ,we knew the answer but the effort on his behave made me want to hug  the big  African  American New Orleans native. When the clerk replied the only ones available were  single beds he  insisted a chair for the bathtub be brought a.s.a.p. to our room. Whoa…..I am in the twilight zone…..We always have to go buy a chair when we are at a hotel for Dake  to be able to bath even if it was a handicap shower.  ( Dake ‘s core strength is so limited  he has to have a plastic  chair with arms or he will not be able to hold himself up.)  We barely got in the door of the room and the chair was delivered.  I was still in shock. It was like little  fairies  were two steps in front of us rolling out the red carpet.  I was ready to take up residence forever
........Stay tuned more updates  on the trip and life to continue soon.......

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