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

Wednesday, January 1, 2014

Happy New Year 2014

So last night I had the joy to party at home with two 9 year olds and one beautiful 80 year old until 1 am.

Next I know I wake up at 8 am, truly at 7 the first time thanks to Bella, but I did manage to get out of bed by 8 am. I feel as if I have a hangover even thought no alcohol was served last night ;) is this the side effect of getting older??? At 42 I now have the joy of feeling slugish without even getting the joy of having a drink? 
So that makes me wonder if I have a drink or glass of wine but go to bed on time (have I mentioned my body needs 10 hours of sleep?) would I feel the same? I am getting out of practice here as my new comfort drink is just Sparkling Water. Which brings me to another point... Why can my beloved Sparkling Water be almost as expensive as liquor???
As a child growing up in Germany we always laughed at the fact that Beer and some Wine was much cheaper to order in a a Restaurant then Coke or Soda. Which explains why many of us prefer Beer or Wine - lol

Anyway, looking around me right now I see a wide awake and spunky 80 year old (my Mom) and of course very awake 9 year old dumplings moving about. I am the only one that wants to just curl up and not move. Strange setup as I am usually the one that seems to be the one motivating the others...

So after my pitty party yesterday afternoon about saying happily goodby to 2013 I am now ready to give 2014 a chance to deliver the year I dream of. A Cure for JM, and other then that no highs or lows. I want a a Vanilla kind of year that in retrospect will go down in the books as uneventful.

I did pick a word to guide me this year (thanks for the idea to my friend Kim) and my word that I want to focus on is ACT. I want to try and act more before I have to react. To be a step ahead and not always feel like trying to catch up would be huge for me. 

Hugs to all of you my beloved Family and a Friends. May 2014 be the year for you!

R A C A


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