Our Journey thru JDM and Life!: Day 45 / 25 at TCH

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)-

Saturday, March 13, 2010

Day 45 / 25 at TCH

The report I got from Ron today was that Connor had a great day today :)

He seemed to do really well for his first Therapy of the day OT, and then he struggled with PT but when he was done he said he loved the special tricycle that uses his arms and legs at the same time. Even thought it hurt him he wants to try it again tomorrow. I guess our mantra that he has to make an effort and get stronger if he wants to be released is working most of the time :)

Ron and Connor also had quiet an outing in the park that surrounds the hospital and Campus and I am not sure who likes it better being out in the fresh air Dad or son? ....

I am sure Connor was happy to be out and moving again after being cooped up all day yesterday :)

Here in LG we had a good day as well. We all went down to the Springs for some shopping and caught a break for lunch. I as a Mom was very pleased when my youngest son after given a choice choose Chipotle for lunch ... Am I raising my boys right or what? - and yes I gave him more then one choice since Panera Bred was in the mix as well - ha ha

Wishing all of you a great weekend and we are also happy to know that as of today all our friends we met on our journey at CMH and TCH seemed to have a 'good' day with their kids as well. Maybe there was something special in the air today!

Also in finishing we want to send some heartfelt Congratulations to one of the boys favorite Baby Sitter when we lived in TX. Auntie Jessica got married today and we are so so so happy for her and her husband :)

Love,

R A C A