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

Saturday, January 12, 2013

Goodbye Flu, still battling yucky feeling and cough for Connor and thoughts about Rick Thomas and his Family!

So Connor finished his Tamiflu medications and while his fever is gone he still feels yucky and the cough he had now for weeks and weeks is still here.
So now we are back to waiting until the 24th this time for the App with the Pulmonologist.....

Alexander, who was put on the preventive Tamiflu, as well as Ron who is on Tamiflu for prevention, are both doing well and not showing any symptoms :)
Yesterday that meant that Alexander was able to go Snowboarding with me to Breckenridge, while C Bear stayed home with Ron :)

We got some very sad news last night which prompted us to head down to C-Springs today to drop off a little Care Package for the Thomas Family. Now we never met this family but as you might realize if you work for American Airlines you are part of a huge Family. While there might be discontent between Management and the Labor Groups, the Employees over all try to stick together and look after each other. 
Rick Thomas is/was a fellow AA Pilot, an FO on the Super 80, who commuted to DFW from C-Springs. Heartbreakingly we found out through the AA Pilot Chatroom that he was diagnosed a while back with a very rare form of Kidney Cancer and that has no cure. Yesterday he was moved from the Hospital section at Penrose to the Hospice Floor. Having had two Family members in Hospice we know very well what that means ...
Now the reason I feel it is a real Heartbreak is due to the fact the Rick is still very young, early 40's with a beautiful wife and three gorgeous and young children. 
If anyone is interested in helping them or following there story you can do so on Caringbridge:

http://www.caringbridge.org/visit/rickthomas1

As to us we are hoping to stay home for the next few days as each outing we do now undertake seems to strip Connor of any energy he has....


Hugs,

R A C A

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