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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.

Monday, May 23, 2011

The Day of Test at Kennedy Krieger Institute

Today was full of test. We arrived at the Kennedy Krieger Institute a little early and was quickly placed in a room. They had a table which Dake laid on and was weighed. We were so glad to get an accurate weight. We had not been able to weigh him since 2008. His chair weighs 357 lbs. and plus his weight makes finding a scale to hold all this weight hard to come by.

We were greeted then by Dr. Genila Bibat, the research coordinator. She asked additional questions and had Dake sign the consent form to give his permission to do this study. The neurologist, Dr. Wagoner, came in asked additional questions and had her nurse come in and draw blood. The nurse first tried to draw blood out of his hand and had no luck. Then he tried in Dake's arm and had no luck. So back to the hand and still had no luck. Then he moved to the top of the foot and was able to get a little blood but not all he needed. (I have to admit this gave me the hee-bee-jee-bees...) The neurologist had him stop and run just the minimum test to make do.

We have never meet a neurologist who was not irrogant and honestly obnixous until today. What a wonderful surprise to meet a neurologist so down to earth and generally nice. She talked directly with Dake and explained everything about the research and the study. She eased his mind on some issues concerning him. (And David and my concerns as well.) The most exciting news she shared today was she said when this drug was administered in the dmx mouse (mouse genetically reproduced to have Duchenne Muscular Dystrophy for research) did not only held the mouse's heart stable but strengthened it....AND it strengthen all the muscles in the body because the drug when all through the body. How exciting this news was to hear!!!

Another bit of side bit news. Dake is going to be in my nephews wedding in June and he was measured for his tux. After being measured, Dake nearly went into shock when he heard his pant size and declared she must have made a mistake measuring him. All that said, the neurologist told him today she did not think all of his stomach was fat. She thought he had extra fluid there and when he gets the drug administered in the hospital she would check into it further....( I wish that would happen in my case.) He was so excited. David is always teasing Dake about his stomach so when she said this he turned to David and said, "So Dad, what's your excuse! Mine is just fluid!"

We ate quickly in the cafe at the KKI and then went into another building for the MRI of the heart. They had to inject a contrast into his veins to see the function of his veins. So this means more sticking. We explained the difficulty we had earlier so they called the best two nurses to come in and handle this....they stuck him in the arm no luck, then in the left foot no luck, then back to the right foot and 30 minutes later...... (same foot used earlier), BINGO! But not without Dake screaming like a girl! (His description, not mine. I wanted him to scream louder.)

We were told it would take about an hour. They started the MRI and after about an hour they ask me to come in and comfort him. I removed my jewelry and sat at his head. After about 20 minutes I went to cross my legs and my sandal flew and hit the end of the MRI machine. Realizing my shoes had metal in them and they were going to fly off and hit Dake in the head. I held them down until they came in to reposition him and I quickly removed them from the room. Whew! My underwire bra tingled but luckily it did not fly off and hit the end of the machine or Dake in the head. What an experience that would have been! YIKES!

They had him take a deep breath, release, and hold his breath for about 12 seconds for 20 times or more. I think I echoed his breathes each time. This exhausted him. The next hour past and they repositioned him and added the contast for the last part of the test. At this point Dake was extremely tired.

Remember the MRI was to take approximately one hour. At this point we were into the second hour. They told him only 30 more minutes. Dake makes it ok through the first 10 minutes and then he begins to panic. I try to calm him down repeatively. I tell him remember this is why you had to be stuck again and we definetely want to repeat that again. The panic attack was full blown at this time.

I so need Lyndsey at this point.....she can get up in his face and back his fears back down. Unfortunately, I could not get up in his face. I could not even slap him! Not that I would but I could not get him to focus.... They came in to check on him and said just 10 more again we tried. I rubbed his legs because he was insistant he needed them rubbed. So I rubbed and he would shake his foot and I would run back to his head and tell him to be still just 10 more minutes. Finally after 2 hours and 45 minutes the one hour MRI was over.

Dake has decide he does not want to be in a casket when he dies but rather put him in a boat an float him down the river. But please don't set him on fire.

Finally we are back at the hotel, we went to eat and he literally had to be fed tonight because he was so exhausted....he could not lift his arms.

All and all he is excited and wants to move forward with his quest!


  1. Oh my Dake! I could not have done that. I hate small spaces. You are amazing. Thanks for the updates! We are praying.
    -Heather, Brad, Ada and Vivi

  2. Dake is so BRAVE!!! I could hardly breathe just reading about the MRI. You are all in my thoughts and prayers .