Our Journey thru JDM and Life!: All about Voting for CureJM....

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)-

Wednesday, July 21, 2010

All about Voting for CureJM....

Can you believe we had nothing planned for today? A Day with no schedule? Shocking :)

Of course even a day with no schedule does not translate into a day 'off'. It means I have to sit down and work my way through all our Paperwork and catch up on Bills and organizing all the Medical Documentation that comes into our House thanks to JDM. A friend of ours who has a daughter with JDM said it right today on a Facebook Post that the Insurance Companies and the Medical Billing Facilities are killing tree's left and right by sending out so much paper :(

Of course days like today are bittersweet because I so cherish a day that has no infusions or therapy scheduled but I also admit I do not like facing all the paperwork and cost factors involved in treating this horrid disease.

I want to ask you again to please keep Voting for CureJM and that we might have a shot to win this Grant that Pepsi is offering to the First and Second Placed Winners. $250,000.00 would be a dream for our Research Team's! and just think if this was the drop in the bucket that would lead to a Cure?

http://www.refresheverything.com/makejmamemory

I have downloaded 138 pictures to my Facebook Wall of Connor's Journey from Diagnosis to 51 days in the Hospital to his first day Home. I had to select from about 400 pictures and some I was a bit nervous to post because it shows Connor dealing with his Infusions, to him being hooked up to Oxygen and just feeling miserable. Most pictures will show his true Spirit however which is him smiling even when he did not feel like it. The pictures also show his twin brother Alexanders journey. He had to spend 21 days nonstop at the Hospital as well and seeing his brother so sick and age 5 and not knowing what was truly going on is not an easy thing to handle. The reason I posted all those pictures is to remind everyone of my family and friends why I am asking you to Vote every day. Thank You for being such a support!!!

I also went and typed up a one page letter trying to combine the highlights of what JDM is all about and how it affected Connor. I then e-mailed it to 5 Newspapers and 5 TV Stations around Colorado Springs and Denver. How I hope they will read through it and consider posting it on their Facebook Walls or any other medium they use to reach their readers or viewers. The more votes we can get the better. I just don't understand how it can be that we are not moving from the 12th place?

We only have 11 days left to vote so PLEASE spread the word as well.

Thank You!

R A C A