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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, May 20, 2011

Days Leading Up To Our Trip.

The days leading up to the trip are nothing less then total chaos.
On Thursday, Lyndsey was to fly into Birmingham to be excorted by us to Tuscaloosa for an interview. Gracey, Dake and I were only 15 minutes from the airport and I get a call from Lyndsey announcing she had missed her flight because security in the Houston Airport had detained them of over 40 minutes. This was at 11:00 and her interview was at 4:00 in Tuscaloosa, another hour away. Many flights were just canceled because of the security's actions.
So the domino effect of phone calls began....finally from work David was able to get her a flight leaving at noon but she had to get a connecting flight in New Orleans and then on to B'ham. This was to bring her in at 3:30. Interview at 4 and flight in at 3:30 and an hour drive equals OOPS....She calls the employer and they are so wonderful and told her to not stress and get here when she can.
With a slight sigh, I had to burn four and a half hours with Gracey and Dake. We shopped, we ate and we learned a valuable lesson. We were not able to find a family restroom. You know those restrooms that are far and few between that the whole family can go into all at once. These are so wonderful to the handicap population. So we find a secluded spot. This was so Dake could use his portable "ernie". (Ernie is a urinal, but we are not allowed call it a urinal because it just freaks him out. So we named it Ernie when he was in high school.)(We decided to share these intimate details so you can see us in our real settings and situations.) Lesson learned..Don't park on an incline when ernie is being used.....I will let you use your imagination for this one...

At 3:40, I had circled the airport for the last time to have Lyndsey jumped in and off to Tuscaloosa. As we make our mad dash west, Lyndsey is franticly changing her clothes and getting prepared for the interview...the phone rings....it is the employer who said they decide she might be stressed by all the events and rescheduled the interview for Friday at 9:00......Sigh the foot relaxed and life slowed down for a moment....

After arriving in Tuscaloosa and finding where her appointment would take place the next day. We start our hunt for a room for her to spend the night. After the fifth hotel of no vancancies we are becoming stressed again. Workers had come in to work on the tornado relief in the area. How wonderful but we need a room. Dake and Gracey and I had to go back to Athens because Gracey had fourth grade graduation at 8:00 on Friday. AFter a few calls we final find a room. After getting her settled the rest of us got home in Athens about 11 ish that night. What a crazy, long day. Make that an extreme long day!

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