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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, May 24, 2011

Back Home Finally

I would like to start out tonight by asking for prayers for Beth Gilliam and her family. Tomorrow she has breast surgery. This is such a wonderful family and my heart hurts for the struggles they are facing.

I have said it once and I imagine I will say many more time. "No matter how will prepared you are for a trip when traveling with a handicap individual something always goes wrong." You just get to the point you expect it. This morning we had our breakfast and get the call our shuttle would be at the hotel to take us to the airport in four minutes. I had reserved the round trip shuttle when we arrived at the airport. The lady who took our reservations saw Dake and knew because we requested a handicap vehicle for our round trip service. At 7:45 am the shuttle arrives. It is ten minutes early which made me smile. We were ready to get home. We the driver comes around to help us in he gets this surprised look on his face and said is he going? He was pointing to Dake. Of course, at this point David and I had realized it did not have a handicap lift .

After many phone calls to this service and many other services we could not find a handicap accessible van available until 10:00 am. Our plane leaves at 10:25. The lady who took our reservation must have thought Johns Hopkins was going to heal Dake between shuttle rides. I appreciate her optimism but not so lucky. We checked on later flights but none available on this airline. I began telling people what was going to be done instead of nicely asking. Knowing David was a master in these situation I let him take over on the phone. After an hour and a half a taxi arrives. It is 9:11 and we still had a 20 minute drive. David literally had to hold Dake in his chair but we arrive at the airport at 9:30. We did not check any bags but still need to get our boarding passes. We had paid extra for priority boarding so we have extra time to board the airplane. This is a common for the elderly and handicap to board early. Yes, they do charge for this now. It use to be a courteous. We rush to security and it is backed up. Soon we learned they put Dake in the wrong line. So the mother in me has him break line in the neighboring line and David follows him. The others in the line where not happy but did comply. Thank goodness. I finish thru my line and was putting on my shoes.....(note to self....don't wear toe shoes when you are in the airport and in a hurry. It is hard to get all your piggies in place.) After getting my stuff rearranged I could not find David and Dake. Baltimore is a big airport and security has about twenty lines going at once. Finally, I see them they are where I left them when we cut line. It is about 10:00 now. So I waved David down and mouthed to him I was going to the gate to tell them they were on the way. Off to the gate 21, my thought while running thru the airport was why 21 and not 1 or 2 or even 12. Arrived at the gate after running my marathon for the day and explain to the flight attendant what was going on. She shook her head as she scanned the passengers boarding passes. They were already boarding our group. Four more groups have boarded still no David and Dake. Then they are currently boarding the last group. The last group was a group of children who were very nice but were new to the flying experience and it slowed things down a bit. Thank goodness! I see Dake in high gear and David in a slight jog beside him. SIGH.... All is well...... until they are ready to take Dake's chair. The luggage man said, "We cannot fit this chair under the plane." I must admit I am in high gear at this point. I told him, "they put it on there coming to Baltimore." He said, "I am just saying I don't think it will fit. " He had been instructed already the seat did not fold forward. So he determined it would not fit. I repeated what I said again. The man said, "So, if I can get it on what do you want me to do with it?" At this point, I was ready to get up in this man's face and shake him. I thought what do you mean WHAT DO I DO WITH IT? David just says firmly, "You WILL get it on. And NOT bend the seat!"
We boarded the plane....last.....then got stuck on the run way for 20 minutes.....You just gotta laugh!
WE ARE HOME NOW.....HALLELUJAH! Dake took a long nap after getting home. And finally got all my piggies in the right place. Ha ha!
We now wait a week and find out Dake's results.

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