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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 2, 2011

Change of Plans for Baltimore

      OK, we have a change of plans for going to Baltimore. At first, we were suppose to go June 20st and June 21st but we made a request to change it for a little later. We have had so much come at us at once we need a little recovery time. Luckily the research team was able to accommodate us and let us go later..New dates are July 13th and July 14th.  This will allow us to kinda catch our breath physically and financially.  Lots of time you do not have a choice if you are participating in a research study but we are thankful they were able to help us out.

Dake and my mom helped me set up for my art show in Franklin at "The Factory"....This is such an awesome place....kinda like an artist mall with cool places full of culinary temptations.  And some businesses but art related like lawyers for the creative world.... so cool.  I am in love.

Lyndsey did not hear anything today from her interview....so we continue to wait. She called but no one answered so she left a message. Maybe tomorrow! Keep your fingers crossed!

Gracey comes home tomorrow.....YAY! I am so excited! 
David will pick her up from camp and the bring her to the art show. I am so disappointed I can not go with him to pick her up....it will be so hard to wait until she gets there...

Dake does not know if he wants to drive and ride for 3 1/2 to get Gracey (he has really missed Gracey, too but he may not admit it) and 3 1/2 hrs. back or stay at the art show with me.  Decisions,  decisions.....

Dake is still having pain in his side.  He still refuses to go to the doctor but promises to go Monday, if he is not better.  He even said it in front of his grandmother, so I have a witness in case he tries to back out of it on Monday.

1 comment:

  1. I love reading about your family's comings & goings. Bet your show is a big hit!! Sounds like it's a wonderful setting. I know your family is so very proud of you. Happy reunion to you all. Dake, where's the pain in your side & how bad is it on a scale of 1-10? And how long have you had it? Is it like an ache or a pain? Sharp or dull? Any temperature? Has it gotten better or worse during the time you've had it? If it's worsened, don't mess around. Go see the dr., ok? Take care...

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