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

Friday, May 27, 2011

About Donations!



I have wanted to post a blog about this subject for a long time but for some wicket reason I get of track each time, but finally I am sitting down to post this.

You know I am guilty of posting in the past to ask for your support of CureJM and for you to have a cause you care for. May it be Cancer, Arthritis, MS, Cerebral Palsy, AIDS etc etc. There are so many causes out there and I find that if you really listen to everyone preaching to you how important their cause is then you would go broke if you never said 'No Thank You', 'I can't' or 'I am already committed to another cause'.

NEVER should anyone feel guilty for not giving money. Let's be honest, many of us are already financially strapped and I feel at times one can feel as if there is a pressure by not giving money. We might feel as if by saying 'no' we come across as not caring. Trust me, while I make CureJM a priority it is only because I am personally impacted. Same goes to my concern about Autism as it is impacting me due to knowing and loving two little boys with Autism. Now, here is where I think you should never feel bad for NOT giving money even when asked point blank ... for one you should never over extent yourself financially, your families well being as always comes first, period. Second, there are so many ways to give and help a cause that do not include money. You can talk about the cause you care for, you can bring attention to it, run a small fundraiser like a Lemonade Stand and give the money that went over the amount the supplies cost. Those are some ideas, however, I found my greatest support for Connor in friends like you, the same friends that are reading this blog right now. Your support went above and beyond because you listened to me and you always had an open ear. You came and send cards and gifts to the boys when we were in the hospital, you came and cleaned our home and brought us food. You are being the best support by being our friends.
So follow my lead and NEVER feel guilty when asked just about everywhere around you to give. There is always a disaster somewhere, a child or adult dying somewhere. You can not give all the time. I chose a couple of causes close to my heart but even I have to say I can't give money anymore. It just makes no sense, mainly because we are in an economy right now where guilt should not impact your life style.

Please know we appreciate you all so much!

Hugs,

R A C A

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