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

Monday, September 24, 2012

Landshark Race # 2 and a very lovely Day!

So many things went well today :)

This morning we started school around 8:30 am and we were DONE at 11 am! The boys just rocked and were focused and before we knew it they finished their videos, sailed through their Lincoln Pages, plus Cursive and even added one Art Lesson. We were so motivated (well me more then them) that I talked them into cleaning out their bedrooms,. Which we did in an amazing fashion. Right now Connor asked to have all the Playmobil, his Costume Box and his Stuffed Animals and Alexander claimed all the LEGO, his Costume Box, Stuffed Animals and some Action Figurines. Everything else went out. Well, again some will go into the Attic and some will find it's way to Mrs. Strubles Classroom and the Ducky Bag :)

After this it was free time for all of us and then heading out early for the Races so we could stop and run some errands. I seem to always run out of Printing Ink :( the good part was me picking up some ingredients for some yummy recipes that Pippi gave me the ideas for on her Cooking FB Page. Pippi is a Vegan and a huge inspiration for me as she is a very healthy person and I am in need to get healthier.
I figure if I start out my family with one Vegan food a week maybe we can make a change in a little way that has some impact. I am even attempting to make my own Ketchup this week ;) 

I am in a very happy mental stage right now and I know it has to do with me being active this past weekend and realizing that I have to overcome the need to step back and close the doors when things seem very dark and scary, and instead trust the people around me that love and like me to make me forget for a bit about the worries and just to be silly and laugh for a while.

Tonight I want to thank all those amazing Mommy Friends who hugged me and who made me laugh and be silly during Alexander's Landshark Race. You know who you are and THANK YOU is truly not enough.
Connor was in amazing spirit and was running and laughing the whole time. He was a huge fan to Alexander, little Hannah, Blake and Joseph, and that made me happy as well.
No I am not on any happy pills right now, even thought this post must invoke that feeling. I think just moving and interacting has been a great Therapy.

Alexander got hurt yesterday and cut his thumb which was bleeding quiet a bit so that I told him if he did not feel up to it he would not have to race. Of course he wanted to and had his sight set on beating his record of 10 min and 11 seconds from last week.
He took of fast and came in at 10 min and 9 seconds. He ended the race falling to the ground and being as white as a sheet. I truly thought he would throw up but he held it together. It turns out he was really pushing himself as he told me he had to go and pee during the race. He said he ran of to some bushes and peed and then got back in the race. So truly he must have been going fast as I know my little ones bladder can hold a lot and he does not go pee in a fast way ;)

Sorry the pictures are out of focus but i did not realize I had the Camera set on Video instead of pictures.










Hugs,

R A C A

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