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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, June 9, 2011

Explaination of the Doctor's Visit

  We immediately tried to explain all we could to Dake and Lyndsey because they heard the initial diagnoses with us. We had so many unanswered questions ourselves.   They saw the shock and the tears that accompanied with the announcement.  Seeing your parents fall apart at 5 years old and 6 years old has got to be a set up for major insecurities and fears.  We explained " Dake's muscles were sick and did not work like everybody else." We tried to reassure them as much as ourselves we were going to stick together and do whatever we wanted to do even if we had to do it differently.  We told them we cried because we were sad and cried because we did not want either one of them to be sick.  But we told them everything was going to be OK and not to worry (even though we were not sure ourselves).  We told them we had lots of doctor's visits ahead of us and lots of questions to ask.  If they had any questions just ask and if we did not know we would try to find out.
Our wide eyed babies absorbed every word of encouragement we tried to share.  We all hugged and snuggled and we all slept together that night.

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