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, May 20, 2010

In our thoughts tonight......

Today a bit out of the blue I read on Facebook from two Twin Mom's (who do not know each other but are both amazing friends) the need for some Help. So my Blog tonight is, for a change, not about Connor or us. I am asking my friends, family and those that follow our Blog to please send some prayers, positive vibes and thoughts to the following people....:

My precious friend Caroline has a friend who has stage 4 breast cancer that has spread from her breast to her liver and bones. The biggest concern right now is a large tumor on her spine. This friend of hers has 4 year old twin son's and a daughter who is in Kindergarten. The one thing I am grateful for when it comes to this Mom, that I have never met in person, is that she has one of the most amazing people on her team. My friend Caroline is the epitome of an Angel. If you believe in Angels then one of them would have her face.

The next one comes from another Twin Mommy friend, Melanie, and here is the post she left on Facebook:

Steven (my friends' son) is suffering from
non-Hodgkin's lymphoma and many complications that have arisen from it.
He needs prayers NOW!!! Just saw an update from his mom Denise that his
liver is shutting down from a Sepsis infection....its not looking good
that he will survive this without DIVINE intervention .....so that's just
whats going to happen....lets pray...


Sometimes the part that upsets me the most about myself is how oblivious I was to the pain families and children went through around me. I think it is sad for me to admit that it took Connor and his JDM to open my eyes to how much sadness there truly is all around us and how I wish I had the power to change it all...

Love,

R A C A
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