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

Tuesday, August 21, 2012

A MUCH better Day :)

Today was such an improvement to yesterday and I feel bad for taking you all with us on this Roller Coaster ride! You must be getting annoyed at me for posting all these up and downs!

We started this morning with a wake up call at 7 am so Alexander and I could start our back to school and Fall tradition of going on a run. Now our run is just a 1 mile loop around 'our Mountain' but if you have been to our home you know there is not one flat surface to be found. So you either go down or up. A great workout in fresh Mountain Air. It does wonders to calm down our youngest for school and to get me energized for the day :) I do have to tell you however that it was a very crisp 46'F! yesterday we actually were in the 60's during the day and the tree's are changing colors so Fall is right around the corner here in the Rockies!

This am Connor got his Methrotrexate Show from me and it went very smoothly. We timed the Lidocane to 35 min and then he was watching the UTube Video of Nancy Sinatra 'These Boots are made for Walking' and he did not even realize when I poked him! Huge success :)

We finished some school at home and left the house by 10:30 am for Cottage School.
Everything at Cottage went smoothly and my dumplings showed such amazing behavior that I wanted to pinch myself. Polite, Quiet and very supportive and helpful to the new Kindergarten Kids addition to the Class Room. Gosh, we have so many new adorable 5 years old's it was pure fun.
There will be a couple who will keep this school year interesting BUT not in a bad way but in a pure funny, stay on our toes way :)
I had to hold back a laugh when Alexander finished his Sweden Country Report and was asking if anyone had any question. One child raised his hand and said he did not have a question but he knew that God died in Sweden. I think there was pure silence for about 3 seconds ..... CUTE!
There also is a new Music Teacher that my little ones LOVE. When i asked them what her name was they said she told them to call her Miss Music but that they don't think this is her real name - haha

I was lucky to have a short visit with Alia and even see Elizabeth. Her little sister is now in Cottage School and I tell you there is something about this family that you just want to hug them all the time!

We are home now and so far Connor is still doing well and we are now looking forward to the PT Evaluation tomorrow.








Hugs,

R A C A

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