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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, May 25, 2011

A Day to Chill OUT

Today my thoughts and heart were constantly with the Gilliams and Jim Waltrous. We continue to pray for their recovery.

Today was a day to relax and get caught up. Of course, to unpack and get everything back in order, one of my least favorite things to do. Dake rested really well last night and David said he had to turn him only once. This is a rarity. But we will take it for sure. Nothing like being in your own bed.

This morning the ladies from home health came and told me his blood pressure was extremely low. I went to check him and he was still wanting to get up. So we had him get up and bathe and rechecked him. Once he was up and going he did fine. He has had a couple of episodes of passing out in the last 3 months and we are not for sure what is going on. He has had a couple of nurses check him out and 2 doctors but they are not sure what is exactly going on. This is during the time we got the report about his heart function not doing as well. We wonder if this is the problem but unless the doctors and nurses can actually catch it as it happens then they cannot completely find the problem. Nonetheless, today was fortunately NOT one of those days and we are thankful.

I think the travel and all caught up with David and me today. We both seemed to be dragging a bit.

Gracey surprised us with a cake she and GaLou had bake us. Gracey had decorated it with the words, WELCOME HOME! Gracey also gave each of us a special handmade card with a sweet message in them. She made Dake's with a drawing of a MRI machine. Dake was afraid to open it. But the note was encouraging inside. We heard from Lyndsey on the phone. She has had a hard time not being with us during this time. It was good as always hearing from her.

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