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

Wednesday, February 6, 2013

Connor's wish and huge success on the Incline :)

Since Connor was diagnosed 3 years ago one of his biggest heartbreaks has been his limitation on what he can physically accomplish.
Now I keep telling him how far he has come since then ... he is Snowboarding which I know is a rare thing to see for kids with JDM!
However, on his wish and dream list has been going on the Incline with me!

I admit I did not believe this would happen for two reasons! 
One was the fact that the Incline is one of the hardest things I have ever done physically myself and it is a huge strain on a body that is not functioning at 100%, and second was that fact that it was illegal until last Friday! 'Yes', it was probably the most broken law in history here in Colorado as you could find lots of people passing that 'No Trespassing' sign each and every day. I would see the Military use the Incline as a workout and we all knew there were plenty of Olympic Athletes using the Incline, as well as all us crazy 'normal' people.
It is one thing for me to trespass but I was not going to teach this to my two dumplings ;)

So, since four property owners and even the President of the USA signed off to make this climb legal I had no more argument on this end...
The second was Connor's physical possibilities and in his mind there was no limit to it. 
I did figure I would take up Alexander first as he is my crazy little Athlete but as the dice fell it turned out Connor was the first to join me ...

I told him we would only go up half the hike as the complete hike would be one mile up, 2800 railroad ties. 2000 feet vertical and a four mile hike back down the Barr Trail.
He was fine with this and so we left at 8:30 am on Tuesday morning for our adventure....
Now, we were lucky to find a great parking place and went to join the row of fellow 'hikers'. 
I tell you that within 10 minutes into the hike I was already wondering if Connor's over excitement of energy would wear off fast or if it was me that had to struggle keeping up with him.
From the get go Connor started almost running up the steps and I would have to slow him down about every 3 minutes as he would be ahead by 15 to 20 steps!!!
Now truly I figured he would wear himself out but not so!!!
He sailed up to the halfway point easily and it was me that had a much harder time keeping up with him!
I was and am so so so proud of him! What I saw was a very happy fighter and warrior and he had the biggest smile on his face the whole day. He loved talking to fellow hikers and loved the compliments he got as he was sailing past adults left and right.
This truly is huge and I felt another battle against JDM was won yesterday. Connor proved his body could rally and so could his mind! 

We celebrated in going to a store in Manitou Springs were he bought a T-Shirt that reads, "If you can't get up the Incline you are to old." and he bought a Coffee Mug with a picture of the Incline on it :)





Hugs,

R A C A

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