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

Thursday, September 13, 2012

Infusion # 3 since the Flare ....

Today was Connor's third week of getting his Solumedrol Infusion, plus the Methrotrexate (Chemo).
He actually did very very well even thought the IV hook-up was not going as smoothly again. He told his Nurse he does not mind the blood but wanted to make sure that I share the pictures I took.
We also had a hiccup again with the Infusion itself as the Nurse also forgot to get it switched over and therefor we ran a good hour late.
Connor's treat was, as is our tradition, to pick out where he wants to have lunch  and today's choice was Chinese.

After lunch and a quick stop at the Audi Dealership to pick something up for Ron we headed home and I am beat!

Last night was very rough as it is hard getting any sleep when the last news of the day are how AA is trying to make the life's of it's Employees pure misery. The new Contract they are putting out if painful on so many levels.
Ron would love to retire asap, but our handicap is our health care coverage. The irony is that Ron and I would get affordable coverage but NOT the boys. The plan that is offered is $2300 a month through COBRA for the boys and I am scared as I know we are very lucky right now with the setup we have with United Health care.
As it stands, would Ron retire I would need to enter the work field so I can get some Medical Coverage that takes care of the boys.
Now this would mean a huge shift and change in our Family dynamites as it would obviously mean changed positions in our Home. Ron would have to become the stay at home Dad that Homeschools, watches over the house and takes care of Connor's medical needs. I would need to find a job that would fit me and my needs as it stands I would want to keep some of my sanity. So times are scary right now and I am going to just focus on one day at a time.
We slightly touched the conversation of moving to another Country if things really fall apart and of course our focus then would be Europe. As I said, step by step and day by day. First priority is the safety and care for the boys and we won't compromise on this one.

So be warned the pictures below will have some bloody images but as Connor said, this is a side of JDM/JM and why should we hide it? You have most likely seen more blood in a movie and this below is actually Connor's World and has been for most of the 3 years since he was diagnosed.
Oh and as of last night Pikes Peak has snow! The Aspen Tree's are all changing and golden already so yes it is officially fall in Colorado!















Hugs,

R A C A

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