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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.

Tuesday, July 24, 2012

Going Home Ever Sweet Home

The Cardiac MRI was run today on Dake but they were not able to get all the details they needed. 
 Dake was worn out from the manual chair and not being in his own bed.
The doctor told us they were able to get the core of the information needed for the research. Woohoo.  Home here we come.
 The test was run at 7:30 this morning but we would not be able to fly out until 8:25 tonight. This was  the earliest flight we could get. We were still hoping the new joystick might arrive today so we would not have to push the 357lb wheelchair thru the airport.  Especially since the wheelchair was not wanting to move easily.

We were also told this morning we may not get reinbursied for our hotel, flight, food and wheelchair that we had to purchase while waiting on the piece of equipment that never did get repaired.
This went over about like a lead balloon.
They had reassured us this was not going to be a problem before we agreed to even stayed.
The main doctor who wrote the research had given his word on the phone that it would be taken care of if we stayed.
 Needless to say we were not happy.
 We will hopefully find out for sure soon.

Dake, Lyndsey, Gracey and I went to see Brave.   The movie theater is next to our hotel.  David was waiting in the lobby
for the UPS man to walk thru with the new joystick that we all had anticipated on.
At 2:37 the UPS man came thru carrying several packages. In those packages was
 the well awaited joystick. HOORAY!
David and the very nice bellhop worked and worked on the chair until finally the familar click sounded and the chair could move.
A special thank you to Mike Provines with AAA Home Health was our hero.  If you ever need wheelchairs or other home health needs Mike is your man....we highly recommend him. He is with AAA Home Health out of Huntsville.
You would think if you are at Johns Hopkins Hospital, you would not have a need to call Alabama for help.

As we are loading up the van provided to take us to the airport a mother with a son in a wheelchair, about 14 years old,  was pushing and tugging his electric chair thru the doors of the same hotel.  I totally recognized the frustration.  We were getting our luggage out of baggage claim at the hotel so we did not have to lug our luggage around all day.
The bell hop who help David was helping this family as well. They were speaking Spanish.  I went over to ask if they needed help in English. The young man said his back wheels on his chair( that was just like Dake's )were not balanced. He would turn on the joystick and only one wheel would make contact with the floor and the other wheel would just spin. He was traveling with two women. One was his mother and maybe an aunt.
When it looked like it was not a quick fix I gave them the wheelchair we had purchased to help them until they could figure their problem out on his chair.
The were very appreciative. I explained it had saved us during a rough time and we hope it would help them.

We are currently at the airport waiting on the time for our flight.....


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