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

Sunday, August 14, 2011

1/2 mile Kid's Fun Run - 5K - Zip Line :)

Now this post is a real punch and fight back at JDM. I said it before that we as a Family would never give in to JDM and sit back and just feel sorry for ourselves. It is one thing to say this as the Parent but it is another when you get to look in your child or children's eyes and know they are just as determined to fight a disease with no Cure.

This weekend Connor ran his first race, one year after setting foot out of his wheelchair, which dominated his life for the eight months since he was diagnosed in January 2010. The Doctors did their part, the Medicine, the Therapies as well BUT his Spirit is what got him back on his feet as well.
We entered our names last week to be part of the 22nd Annual Woodland Park Mayor's Cup, Connor and Alexander for the 1/2 mile Kid's Fun Run and I for the 5K run. Neither of us had done a run before, granted I hike the Incline and run down Barr Trail but as Ron pointed out I never ran more then one mile on a street. The boys play around their playground but never ran a half a mile distance before.
It all was an amazing success. Alexander came in 6th and Connor was in the third part of the field. We told since last week that we are adopting our precious friend Allison Simpson's Mantra of being a Completer and not a Competer. It was all about making the finish, no matter what place we took. Connor of course did say that he was happy he finished the race but noticed that he was the last one of the 'older' kids to finish and that all the kids behind him were 'little' kids. Ron and I never noticed where or who was in front or behind because all we saw was Connor 'RUNNING'! He started walking towards the end and when Ron got next to him he ran the last 20 meter or so to the finish along side his Dad. How proud can I tell you we are???? There are not enough words!!!!!! I just wish I had the camera to take the picture of him crossing the line with Ron.
So I am still not sure what made me sign up for a 5K but I admit I was motivated to have a goal, especially when we tell Connor all the time that you never move forward if you don't try and make an effort. It would be a lie if I told you that the run was easy for me! The start went really well and I think the first mile was actually not bad at all. It went slightly downhill and through a shaded neighborhood, BUT oh my did I start feeling the pain when we turned on Kelly Rd and all I see was this looooonnnnng and steady uphill. To make matters worse I turned from Kelly to Rampart to be faced with the same view. My poor friend Caroline and her two boys barely got a smile or wave out of me when I ran/crawled passed them. They came out to support and cheer on Caroline's Husband Jeff and I tell you they were very lucky that I did not run to them and take a chair and not move again :) I do admit I was extremely motivated to see Allison and her 7 year old son Logan in front of me. It was not easy trying to stay with them and I tried to see if one can draft running as well as one can driving in a car. I don't think it worked as well as I hoped but it was worth a try. I did finish the race as I had no choice since my son's completed their run. I crossed the line at 35 min and 21 sec., being cheered on by Connor and Alexander who ran the last 20 meters along side of me! Ron was as always an amazing support and Thanks to him we have pictures to prove we did it! Allison and Logan crossed the line almost one minute ahead of me and Logan got first place in his age group!!!! Way to go!!!

So then you would think we would go home and pass out but not this family! We actually got home and got busy putting up the Zip Line Ron got the boys!!! Leave it up to my husband to figure out how we can put it up ourselves and he did an amazing job! One more wonderful addition to our Enchanted Mountain and 22 Acre Woods ;)

Tonight I do have to end with another wish however. One of our JDM Families Child is in the ER right now and the family is worried that their precious and beautiful daughter might have Aseptic Meningitis. There children are also Identical Twins and they were on their way to Washington D.C to see Dr. Rider at NIH for the Twin Research Studies. Their sweet girl has an especially hard and painful battle with JDM and to be faced with this now is more then heartbreaking. Please think of them and if you pray, pray for them. Their sweet girl will have a Spinal tap first thing in the morning.

Hugs and Thanks to all of you who have shown nothing but support to us.

Love,

R A C A













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