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, March 31, 2014

Recovery and two determined warriors :)

I know every parents is convinced their kids are the greatest and I have to say that I know for a fact that my two dumplings are one of the bravest and courageous souls out there.

It has been one week today since the surgeries and as of now they are off pain meds and have been back in school since Thursday (at home on the sofa with their feet propped up). They are both getting much more confident on their crutches and the most amazing part is that there is no complaining at all!
I admit that I am super grateful about them walking on their crutches now. Carrying 27 kg heavy kids around has been hard and getting up every two hours for medications and bathroom breaks made me feel as if we were back to the Mommy stage of having 'little' kids.

It has been absolute heaven having 'Oma' here as well. To have the help on things that are not elated to the boys care has been the greatest gift.
 YAY for family!

As smooth as most of it went I still keep my fingers crossed that by some miracle we could get around having the same surgery done on their left feet's!

Oh and here is a funny anecdote that made me laugh. When Connor had his worst pain he said he wanted for me to go and get him a white needle for his homemade Voodoo Doll he had made after our trip to Nola last year. I told him I don't have one for him but I could put one in the Doll that I had bought and that came with a white and black needle. Now we had never used the dolls for that regard as it was meant as decoration of sorts. So I took the white needle and inserted it into the right ankle. According to both my dumplings they said they have been pain free since that night… Well, whatever works and I think that little doll might be put to work more often now ;)




Hugs and thank you all so much for checking in 

R A C A

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