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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 31, 2011

Dake Gives Us A Scare

 This morning the home health ladies had come about 7 give Dake his bath.  They had him ready to turn the water on and Dake asked for me.  One of the ladies came and got me and when I got there he tells me his side hurts and he does not feel good . (on the right side) I checked out his side and felt around to see if there is anything visible and check for anything abnormal. I must have hit the area.  He says to stop and his face and lips turn completely white.  His head is to heavy for him to hold up. He passes out for a few seconds and comes back and tries to assure me he is OK.  We put a wet wash on his head and he keeps his eyes close. He is still having trouble keeping his head up. The home health helper goes and calls their company to send a nurse immediately..The nurses were all out. Then she calls the 911 and gets an ambulance to come. While waiting on the ambulance he continues to be white and he gets really nauseated  and seems to shake a second or two.  He comes back  and says," I am fine don't call 911."   I checked his pulse and checked his blood pressure.  Blood pressure was normal and his pulse was low at 48.   We get him out of the shower chair and get him back to bed and the paramedics arrive and check him. His blood pressure is normal and vitals at this time are stable and fine. He wanted to go to sleep.  He seemed fatigued and worn out.  He is still sleeping now. I called the cardiologist and they have noted it in his chart and said to call if it happens again. 
  I told the home health ladies he was like a kid who is sick until you get them to the doctor and then as soon as the doctor comes in the kid is just fine....They both said ,"Well we know something happened."  Most of the time when he has an eposide the doctors will say we need to catch it when it happens.  They both said they would be witnesses.  Will keep you updated later.


  1. I sure hope your study goes well. I am prayig for positive outcomes and for a cure for Dake and all the others.

  2. What a scare! Sure hope it doesn't interfer with his study. Glad the nurse was there and you had witnesses! Prayers going up for Dake and all of you.