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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.

Friday, July 8, 2011

Family time and Visiting...

Nick, Dake's first cousin, from Savannah, Georgia is here visiting for a few days. They have hibernated in their own world with technology and have enjoyed each other. Every now and then Gracey will join the mix.  I will hear them occasionally laughing at some funny youtube they have discovered.

Yesterday, we got out of the house and went shopping at Bridge Street Outdoor Mall.  The day looked perfect weather wise then we came out of one store and it was pouring down rain. Luckily we had some umbrellas in the car.   Dake is usually miserable if he gets wet but his electric wheelchair does not mix with the rain at all.  The sun played peek a boo and we were able to enjoy our day.  We did make a mistake of going into the Mac store.  Dake has been wanting a Mac for three years.....but now our Christmas list has already grown....very cool place.

Today we will go to Mimi's (David's Mom) house in Tennessee.  We have family from Cincinnati coming to visit and spend a few days.  We will see the new addition to the family for the first time, Lucas, he is child number 7 in his immediate family.  We are a excited as always to see everyone and play with the new baby.

This month is full with travel.  On the 12th we will return to Baltimore for Dake to start the medication for the treatment of the heart.  Then on the 27th, Gracey and I are flying to Houston to move Lyndsey here after her 3 year apprenticeship under a master chefs at the Houston Country Club. We are excited to have her closer. The job hunt is on....still waiting on the instructor job in Tuscaloosa.  Mrs. Weatherford and my mom will hold down the fort here with Dake.  I am concerned if there is a situation that Dake will need to be lifted in the day hours because David is an hour and a half away during the day.  Phillip is interning at Browns Ferry but does not have transporation and he does not drive.  Pray no needs to lift him will come up during this time. It is an unperdictable situation for sure.

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