Our Journey thru JDM and Life!: CureJM Conference and the Social Aspect....

Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips

MRI of his spine

X-ray of his chest

CAT Scan of his brain

CAT Scan of his chest

MRI of his chest

MRI of his hips

Numerous Blood Work

Spinal Tap

and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010

-Juvenile Dermatomyositis (JDM)-

Sunday, July 28, 2013

CureJM Conference and the Social Aspect....

There were many factors as to why we wanted to go to the Conference so much this year! For one missing it now for the last two years in a row after attempting to be there had been frustrating but also it brought us back to Chicago, the one place that brought us HOPE when Connor got sick...

I pointed out the medical news and seeing our beloved Doctors in another post and it really was a most wonderful part of this conference. Then of course there was the race part which was so much fun and really brought home how far Connor has come since December 2009!

However the one part that really was the heart and core of it all at the Conference was the social aspect... To finally hug and talk face to face with friends I had through CureJM and Facebook was absolutely a huge highlight for me and the boys. I wish I could list names but there are so many and I feel horrid to forget one or two. If you talked to me while we were in Chicago then know I mean you! You made me laugh, think and cry this weekend and I left more motivated thanks to you all.

I so wish everyone could experience this at least once but I know we will try to make the next Conference as well. As it looks it might be, but is NOT confirmed, in San Jose, CA in October next year :)

Hugs,

R A C A