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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.

Wednesday, June 22, 2011

The Monthly Visit from Adiba!

  Each month Dake's social worker comes and makes sure all the services he has are going well and she makes sure his life suits his needs.  This visits gets rather redundant but I am so thankful for the help we finally receive.   It looked very doubtful that we would get any help after being turned down repeatively for home health thru Dake's Medicaid.   Finally after much frustration, we went to  fight for Dake's case in Montgomery in front of a panel of officials representing home health in the state.  We pled our case and one look at Dake and we received appologies and immediate services. So it was definitely worth the trip. But back to today.....The social worker, Adiba, came again today and asked the same questions and we gave the same answers Dake signed off  and off she went. There is so much red tape to constantly do to keep up these services.

   I must admit I could not don't handle Dake by myself very easily or possibly at all anymore.  My body was beginning to break down and hurt constantly.  It started 1998,  in eighth grade Dake weighed about 80 ish pounds. I would carry him everywhere that was not accessible and in tranferring him.  He had a scooter but we did not have a van that was accessible.  We were saving to purchase a van but at the time we were not there yet. The doctor said I need to stop carrying him so much because my heel bone was a wearing down the heel pad on the bottom of my foot. I continued until it became impossible.

     I have shared with you that David turns Dake all the time, every night.  At one time I was able to help David with Dake and we would take turns turning Dake.  Around 2004, Dake grew and finally  started to gain weight after a long battle of being extremely thin and having no appetite for most of his high school years. When he did begin to gain weight and grow taller is when it became harder and harder for me to turn him. He was getting taller, heavier and at this point lost any strength to help.  I usually tell him he has bricks in his bum.  I would go to turn him and lift him from a lying position and separate my shoulders or it would cause the disk in my neck to bulge or rupture. These incidents would happen on and off.  I would not have surgery per my doctor's request because I did not have a time to heal before needing to lift him again.  I would take anti inflammatory drugs and pain relief. Bless Dake because he would try his best not to have to flip unless he was absolutely hurting.   Sometimes Phillip was able to help out until I recovered somewhat. Thanks a million times to Phillip for coming to our rescue.  I had to have a bladder surgery a couple of years ago because the doctor said the way I picked Dake up I would have so much pressure on my abdomen I literally blew out part of my bladder. Since he is taller than I am I will lean him on my body and over extend my back backwards to pick him up from a sitting position. I tend to compress my spine because of this lifting this way  too.  Only problem with surgery was a six weeks of not lifting anything heavier than a milk carton.  After getting to the point of no turning back my amazing family and Phillip once again helped me back to where I can help again.  I still struggle with my shoulders and neck occasionally still if I lift him and pull wrong.  David leaves the house at 4:20 a.m. and I will help him in the morning during the next three hours until home health gets here. And I lift him during the day when it is necessary. We have a hoyer lift but most of the time this lift does not meet his needs.
  Please do not misunderstand me at all. I would not change anything about helping Dake other than make me stronger than an ox to be able to help him better. I am very thankful to be able to take care of Dake at home.

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