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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.

Thursday, January 5, 2012

Back To School and a Whirlwind of Activities for January

      Gracey goes back to school tomorrow. I am never ready for my kids to go back to school. I love hanging out with them and enjoy time with them. 
      This month will be busy for us. Dake and Lyndsey have Gulf Coast Getaway in Panama City. I usually go and take Gracey and drive our group. This year Gracey has a gymnastic meet in the opposite direction.(Gracey is not happy she has to miss too.) I love going to hear Randy Harris. But the amazing singing is worth going to hear alone. Not to mention the experience of the ocean and beach during the off season. It feels like your own personal beach.  Dake, Lyndsey, Phillip, Evan, and Miranda are for sure going and others are still pending.  I know they will have an amazing time.
         I am a little worry about Dake and his breathing.  This winter has definitely been different.  He has had to have more breathing treatments in November and December of 2011 then all his treatments in the years past combined. Also our pulmonologist we have been going to for the past few years is moving to Arizona. I am happy for him but sad for us because I really wanted to have a "relationship" built with the pulmonologist before needing him or her on a regular basis.
   So far we have had only one scary situation with Dake and his breathing. Dake had a treatment right before bed. He then woke David up about 2 AM unable to get air in.  He was scared and his eyes fully expressed it.  We repeated his treatment. I knew if this did not work we would have to call an ambulance.  Luckily it did work.....Thank God! 
Before heading to GCG the group above will all be instructed on how to help with the breathing machine. 
 This is the first time I have felt the breathing machine should travel with him.

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