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)-

Hope

Hope

Tuesday, July 23, 2013

Santas Visit to our CureJM Kids in Chicago!

So Santa made an apereance this weeken to visit with all the kids at the CureJM Conference. He wrote an email about his experience to our Ninja Nana and here is what he said:



Was thinking about Santa's visit to the Cure JM conference Saturday. One request the children had was to sing a Christmas carol. I suggested Silent Night but was outvoted easily so we sang Rudolph the Red-nosed Reindeer.
Previously I listened to a wonderful Advent sermon series based around Rudolph. This morning my idle mind was in receive mode and I was hit with this:

Rudolph is so special now and arguably the most popular reindeer, but it wasn't always that way was it? Rudolph was different, visibly different, and that made him an easy target for the other reindeer.
They were mean, banned him from playing with them. It wasn't 'til Santa noticed the one special thing about Rudolph - his shiny red nose that others made fun of. Rudolph wasn't the strongest, not the most handsome reindeer, but he put to use his one special quality and did something that none of the others could.
The JM kids know they are different; we need to help them discover what is unique to everyone of them. They need to feel (you've heard this before somewhere) Wanted, Welcome, Useful and like Rudolph, Needed.
Santa

Now I like to add that I was told from our beloved Ninja Nana who knows Santa, that each story given by the kids put tears in Santas eyes....
She said he could not recall if it was Connor or Alexander but one of them sat on his lab and asked for Opa to come back from Heaven!

Hugs,

R A C A

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