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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 26, 2011

Early To Bed....Early To Rise...

    One out of two ain't bad.  
    Tomorrow morning Gracey and I will leave Athens and head to Houston.  We will leave our house about 4:30 a.m. and drive to Nashville with a lay over in Memphis and then on to Houston.  Lyndsey has nice agenda planned  for a girl's long weekend out. ( I hope we have time to pack her.) We are excited to meet some of the people she works with and to see her apartment.  It's bad that we are just now able to see her apartment the same weekend she is moving out of it.
      We have not traveled by van in the last year because Dake was having trouble traveling that far. So to simplify things we would fly Lyndsey here for special times together.  This is why we have not seen her place for the last year.
     I think I have all my ducks in a row for Dake. Mimi and GaLou (grandmothers) have graciously agreed to stay and help with Dake. Neither one nor should they lift Dake so Eli has agreed to be on call for them in case he needs to be lifted after the home health ladies leave in the morning.  David works in Scottboro now and is an hour and a half away. If Dake needed to be lifted for some reason he could not get to him immediately.  Thanks so much Eli this makes leaving so much easier.
    I have his meds separated and labeled for Dake.  He has three doses a day. I got the emergency numbers posted on the cabinet door. All the home health ladies are on ready. Thursday we will be minus one girl but it is taken care of and should not  be a burden on the grandmothers. All his clothes have been washed and dried.  I know am forgetting something but hopefully everything will work out just fine.
     Dake had something happen today that has never had happen before.  His hands were swollen and puffy. Not sure what caused this and he instructed me not to worry.  His grandmothers instructed him he had to behave and not get sick while I was away. It could be the heat, maybe or the new medicine for the study....not sure but will definitely be watching it. He has had a headache the last two days as well. 
         It is nice of him to make me worry right before I leave. haha.
He told me not worry but he did ask me in private later if I thought it was OK. I jokingly said, "You are not to worry." in the same way he told me.
Lyndsey will come home to continue her new job search. We have several in our family who have finished college and started the hunt. Hoping they all find there dream jobs soon.
Must go to bed now!

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