Total Pageviews

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, June 8, 2011

Remembering the Day We'll Never Forget...August 29, 1990

    In early 1990,  I remember thanking God for my family and the fact that they were healthy and happy. I tell you this to illustrate how deceiving Duchenne Muscular Dystrophy is.  I knew Dake moved slower than his sister, who was 15 months younger, but honestly his personality was a more laid back kind of personality.  His sister came out of the womb ready to conquer the world and conquering it by being the best. I definitely had two wonderful extremes to nourish and nurture.  Dake moved slower but not enough to worry something was horribly wrong. 
    As a young boy, he had such a big heart and was so compassionate.  He was quiet and only talked in public when he had too. (at home he was not quiet)  He still laughs because when he was in kindergarten and got in trouble for talking, I was so excited he talked.  We went to McDonald's to celebrate!


      At the end of his previous school year, the school had screened the children for scoliosis. Dake's report came back saying he had a slight 6% curve. I consulted a physical therapist friend that encouraged me to watch it but not to worry.  I went to the library  and read up on all the information related on subject.   Little did I know I was reading about my future. I came across a little blue box in the scoliosis section. It  said "sometimes when children that are diagnosed with scoliosis and have large calves sometimes have Muscular Dystrophy." Dake had big beautiful calves.
    At that point my heart started pounding and I sat down in the middle of the aisle at the library. Muscular Dystrophy meant no more than the Jerry Lewis Telethon to me.  I looked up muscular dystrophy in medical encyclopedia type book.  It said that muscular dystrophy was a genetic and inherited disease. I closed the book and was able to take a breath and said, "Thank God", (out loud).... we did not have muscular dystrophy anywhere in my family or David's family. I returned to my feet and left and did not think about that little blue box again ........ at least for awhile.
    
      School started in 1990 and he went to the first day of school. He got up that morning with a cramp in his calf, in his leg.  It was extremely tight (this had never happened before). I gave him some tylenol and rubbed it and was sure it would help thinking his day should be fine.  Dake had beautiful legs and his calves looked so muscular.  He was often asked if he biked all the time or if he played soccer all time with those  muscular legs? (Another deception of this disease.)
     School concluded that day and much to my surprise Dake's calf was still hard and cramping.  He did not complain too much but I know it had to hurt. I called the doctor and took him right in. Worrying, I asked the doctor about that little blue box.  He assured me  I was over reacting.  He said, "Dake was premature and because of that his muscles are slightly delayed but he was constantly catching up. But he is fine." (And he was right. He was continually getting stronger. Another deception of this disease.)  But I asked him what would it involve to just check for M.D.? He said a blood test.  I said please just run it and make me feel better.  He did.
    It was August 29, 1990, the doctor called and ask if David and I would come in after the last appointment.  My heart sank. I called David and his heart sank.
   We walked into the doctor's office of silence.  It was not like it was when we usually visited. Our kids are with us. The doctor said he could not believe it. He even ran the test again in case of error but Dake had Muscular Dystrophy.  He did not know what type just that he did have it and we were to go to Children's Hospital tomorrow and see the neurologist. The doctor cried with us. The kids did not know what was wrong. As we walked out, we were handed our bill for our visit....(what a final touch for a horrible day!)
   We had dinner plans with friends that evening. We were already late.  On the way home, David began hitting the steering wheel repeating "NO, NO, NO!  I tried to get him to pull over but he did not even hear me. I was trying to calm him down and the kids down.  Honestly, I am surprised that the steering wheel wasn't bent.  We made it home and our friends, volunteered to take the kids and give us a moment.  I did not want them out of my sight. I just wanted to hug my family and never let them go.  Lyndsey would not go but Dake did.  Lyndsey would not leave my side. At this point, Dake knew he was sick but he did not see what the big deal was because he felt fine. Dake honestly still carries this kind of attitude till this day.
    David and I knew we had to have answers right away because the doctor told us in from of him and Lyndsey.


More later, not easy to relieve some of this stuff so I am going to take a break.

No comments:

Post a Comment