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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, July 13, 2011

We finally Made it to Baltimore

We left Huntsville in a crazy rain storm.  When we took off as the rain was pouring down and lighting was in the distance. Soon we were in the middle of the clouds then in the middle of our air time we climbed up above the clouds and the sky was so amazing... the beauty of the sky was awesome. The sun highlighted the clouds and it made you feel like you touched a piece of heaven.....

   Getting on the plane went well and not any trouble. The beautiful sky gave me lots of hope all was going to go well.  Then we landed.........Dake told us prior to landing  he had a major" wedgie'. We could not help him until we landed without looking like we were molesting him.  We couldn't get up and move him because we had to stay in our seats most of the way because of the storm and turberlance. The warning  signs turned off and we were finally able to  relieve him . We landed.  Everyone emptied off the plane and we patiently waited for the exiting aisle chair to arrive. We waited and waited and waited...the time for our handicap shuttle (which I triple reminded them to have a handicap accessible vehicle because of our last trip)to pick us up came and went and we waited and waited.  Let's just say this is the part where the "straw broke the camel's back."  The good news is David got to spend the night with Dake and I in the hotel. The bad news is David almost had to spend the night in jail. Surely, we are not the only people who ever traveled with a motorized wheelchair but from the reaction of the airlines you would think so.

We finally made it to the hotel....all three of us. It was around 9:30 pm and we were starving....we had not eaten since breakfast.  I found this four star hotel online in  package deal with the airline tickets cheaper than a 2 star hotel. The hotel is historical and gorgeous.  The man at the front desk told us the restaurant would be open until 10:00 pm. This gave us about 30 minutes to get in our room and back down to the restaurant. When we got to this beautiful restaurant, the waiter was friendly and went to seat us.  I was leading our group to the seat the waiter had appointed for us. He gave us wonderful table overlooking the entrance. On the way to our table, I saw a little mouse scurry across the floor right by our table. (ok....beside the fact, we were in an eating establishment  and we saw a mouse ......mice are my least favorite things on the earth. Ok, honestly,  I am kinda scared of the furry things uggggh)....We told the waiter and he laughed and said yeah I saw it too......NOT GOOD!
 ( But I did not scream at least....)

Tomorrow is a new day.....right?

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