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, September 4, 2012

A beautiful Morning/Day :)

There are Days when everything just falls in place beautifully and this morning was just like this :)

I woke up at 8 am to find my youngest just crawling out of his bed and my oldest announcing that he had already done his school videos and finished most of his pages, including a scan-it page.
So I had one very rested child and one that was happy with his accomplishments and an all around happy mood.

Connor even went ahead and reminded me that today was his shot day ... that part is almost unheard off as he keeps hoping each week that I will forget about it ;) It went very well as he was researching things to do in Colorado on the iPad while I gave him his shot. It looks like Dinosaur Ridge is on our future Field Trip Plans :)

We are still all very sick with the cold and are once again supporting the Kleenex Company successfully. I am thinking how happy they must be at Kimberly-Clark Global Sales, LLC, Office when Cold and Flue Season comes around. At least we are making someone happy, right?

Colorado is treating us with a beautiful day again today so we were counting on a little nature outing on our mountain later on for some coloring or Nature Sketching and picnic with the boys.

Fingers crossed again about school tomorrow. Connor said out of the blue this morning at breakfast that he wants to stay at home tomorrow. So we see how this plays out.
I did leave a message with Dr. Maynards Office since he mentioned to Dr. Soep that he had a resource for someone that could help Connor cope with his pain and life with a chronic disease. I am happy to say that I got a call back from him in person and he gave me a number to call and have Connor scheduled.

We aso started a new little adventure called 'Cooking on a Stick'. Yesterday we had the traditinol Sausgage on a Stick and today we are braving backing bred on a Stick as long as Papa is up making another fire tonight. I am somewhat adventures but I am leaving the fire making things to my husband :)

I love Fall in the Rockies and as long as Winter keeps holding back for a while I be happy. Of course if you ask my dumplings the snow can not arrive soon enough. They are ready for Snow Boarding Season but truly want to start Bobsledding, thanks to the movie 'Cool Running's'. Good luck in finding that around here - haha
and that shows me that Connor is projecting ahead that he will be snowboarding and having fun in the snow. Mindset is part of the battle, right? :)

Oh and to make the Day as good as perfect I was able to take a nap with Max today :)


















Hugs,

R A C A

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