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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 17, 2012


Dake had an appointment with the ONE pulmonologist we found in the area who had at least seen one muscular dystrophy patient. The office info us the doctor was not necessarily a Duchenne patient but at least muscular dystrophy.  So it was worth a try to see if he will work with us.
Dake and I meet Lyndsey and Brittany at Alabama A & M before his appointment. Lyndsey is looking at a couple of masters programs there.  She was like a child in a candy store.  It is a joy as a parent to see your child have a passion for something.  To know they have a desire do to something so strong and productive.
The professors were impressed with her credentials.  (Of course, my thought as her mom was if you are impressed with what is on paper wait until you get to know her!!!)

She was overflowing so much with passion she was offered a job before she had even committed to enroll.

She has many decisions to make ahead of her for her future.  But what a wonderful place to be, having choices is a blessing.

Dake and I left earlier so he could eat before his appointment.

We arrived at the new pulmonologist office an hour early.  I figured out I could get started on the mountain of paperwork I did not receive in the mail. We went into the lobby and found the location of his office. He was located close to the empty information desk in the lobby. The door had his name and the other doctor he shares the office with was also on the door.  We tried to open the door but the door was locked.  This was early afternoon time so I thought they must be at lunch.  The info desk was empty and so I thought well everyone must be at lunch.  Neighboring offices were busy with people coming in and out but I figured they had a different policy.   Five minutes till the appointment time the info desk attendant returned and informed us that the doctor had moved down the street. Really?... Seriously why not just put a sign up people!!!!  Better yet take down the doctor’s name off the door!

Extremely frustrated we rushed to the car as fast as we could with a wheelchair, waited for the one speed folding ramp to unfold, lower, wait for Dake to adjust his chair so he would bump his head, raise the ramp and wait for him to carefully drive in the van so he doesn’t give himself a scalp job, close both doors and now for me to jump in.

We arrived at the new office and repeated the above process in reverse and enter the waiting room drenched with sweat.  We explained to the receptionist our challenges.  She replied, Yeah, we moved last October.   This was our first time here. A sign would have been nice.  And the internet contact info needs a little update too. She wasn’t to compassion about our dilemma. We received the mountain of paper work and began filling them out. I was thinking, well, I guess we are the only ones with having trouble finding his new office until another man came in with a similar story.  (She did not seem to bothered about him either.)

Finally, after witnessing some waiting room drama with other patients we went back to see the doctor.

(Not getting a good feeling at this point but we will see.)

The doctor came in and was knowledgeable about Duchenne . He seems to be willing to work with us with the pulmonology issues. The thing that bothered me most was he was very negative about telling us there is no cure and he was limited in what he could do and most boys don’t live very long. (Of course we know all about Duchenne’s  and the negative sides . Dake could probably teach him a thing or two. )  I told him,  “I just wanted to know if you are willing to work with us….I KNOW you are not God. “

He agreed and that was that. He wants to do some testing after our Baltimore trip.

I just don’t want to be bombard with the negatives of the disease when our lives currently is positive with the disease. We all know this can change in a minute but let us enjoy the good while we can.  It helps anybody to say encouraging words to them.

Dake said maybe he thought we didn’t know. I said,  “Surely he did you have out lived all the ones you have known. They were almost all younger than you.  He had to know we knew the doom and gloom side because you are eight years over what the doctor’s said you would live!”

Our former pulmonologist who moved to Arizona was so encouraging and made Dake want to work at stay healthy.   I really miss him.  I think maybe I could have used a little encouragement from doctor too.

But we at least have one familiar with muscular dystrophy and we are going to focus on that!!!!

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