Our Fight - Living with Duchenne Muscular Dystrophy: April 2012

Thursday, April 19, 2012

A tear jerker

I just watched a music video on utube this morning that I got from my support group through facebook. I felt the need to share it on my blog. I have to warn you that it was a real tear jerker. The song was beautiful and truly represented alot of emotions that I felt when we initially received Logan's diagnosis. I'm sure you can understand why it was such a tear jerker for me. If you're interested click on this link: http://www.youtube.com/watch?feature=endscreen&v=azt2MdViON8&NR=1

I will be doing a medical update on Logan's April 3rd follow-up appoitment soon. After every appointment I receive a copy of the dictation from our doctor. I'm waiting on that report before I post my update.

Treatment Timeline

6/18/2012 - Jocelyn's final DNA report reads Mutation detected. A deletion in the DMD gene encompassing exon 46 was detected
5/25/2012 - Blood draw on Jocelyn for genetic testing to see if she is a carrier of Duchenne Musclar Dystrophy
5/16/2012 - EKG and Cardiac MRI done for Mom to check heart health - All tests came back normal
5/10/2012 - Echo cardiogram and first appointment with the Cardiologist
4/3/2012 - Follow-up appointment with Dr. Irina Rybalsky
12/22/2011 - Mom's final DNA report reads Mutation detected. A deletion mutation in the DMD gene encompassing exon 46 was detected
12/7/2011 - Blood draw for Mom to check if carrier of Duchenne Muscular Dystrophy
11/9/2011 - Logan recieved his nightly leg braces. Day 1 of wear
10/19/2011 - Fitted/casted for night leg braces to help prevent contractors
10/8/2011 - Started steroid Deflazacort
10/5/2011 - Had a bone age test done to check growth and to monitor bone health for Osteoporosis a side effect of the steroid
9/20/2011 - Discussed treatment plan with Dr. Irina Rybalsky. Starting Logan on the steroid Deflazacort, daily vitamin D3 suplement to ensure strong bone health, and night leg braces for flexibility and range of motion
9/13/2011 - Final DNA report reads Duchenne Muscular Dystrophy a deletion mutation in the DMD gene encompassing exon 46
8/23/2011 - Seen Dr. Brenda Wong at Cincinnati Children's Division of Pediatric Neurology diagnosed with Muscular Dystrophy. Waiting the results of the DNA blood test
8/19/2011 - CPK blood test came back elevated at 21808. Normal range is 75 - 215
June 2011 - Pediatrician referred Logan to the Neurologist for evaluation of muscle weakness
Pre-school 2010/2011 - Struggled with getting up from the floor, falling alot, and not running like his peers

Our Fight - Living with Duchenne Muscular Dystrophy

Thursday, April 19, 2012

A tear jerker

Cincinnati MDA Muscle walk March 24, 2012

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