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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 30, 2011

Memorial Day 2011

Today is the day of remembering and honoring those who have fought for our freedom.  What a wonderful legacy  to give your friends and family to know your efforts allowed this amazing thing we called freedom.  In my own family I have so many to thank but also outside of my family...To all who have served and are serving now.....please accept my humble thank you.

  David, Dake and I cooked out. We invited mom and dad over. 
Dake had called another friend who was not home. We enjoyed a nice meal and conversation. I really enjoy having Mom and Dad  in the same town. Most of our married life my Mom and Dad have lived 12 to 15 hours away.  So the fact we can do these things now is the best.
Early this morning, 3:00 a.m. to be exact, we get a phone call. You know that phone call that wakes you up out of a dead sleep and your heart jumps to your throat.  It rang once and  I was up on my feet standing next the night stand. I could have just reached over but because of the shock of the ring  I jumped up. It was silent and them this precious little voice says "momma?" My heart is pounding. She tells me her legs and arm are hurting and wants to know what to do.  Knowing the only phones at camp are available  about 300 yards from her cabin, I ask if she is by herself. (She is the child of mine that would have ventured out by herself to call me. She is a determined little girl. ) She said her counselor was with her.(SIGH) I told her she would have to go to the nurse because I had left the medicine with her. I asked her if she was OK....she replied in a matter a fact way, "yeah, momma!"
Later in the day I called the camp director to find out if she was OK. He said she was fine and went right to sleep after her medicine. I must admit. David and I did not go right back to sleep. Ugggh.

Dake said to me right before he went to bed last night, "Mom did you remember to take Gracey's medicine for her legs?" He was missing her too and trying to remember if we got everything she needed. (Gracey has leg pain when she over extends her joints. She has had problem with it since she was a baby but at least now she can verbalize it now. The doctor's thought she might have Juvenile Arthritis. But thankfully she tested negatively for it. Nonetheless, she does have pain often.)
Dake did say it was quite around the house today. He and Gracey has  their routine of listening to music together or watching movies together. Gracey pops microwave popcorn and gets them some Kool Aid and pulls a stool up next to him and they watch a movie. He started this with her when she was small and now it is a regular tradition. Dake will watch usually what she wants and enjoys these moments with her. She does definitely know how to push his buttons and vice versa but they do have some really sweet moments too.

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