Our Journey thru JDM and Life!: So Thankful....

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, November 30, 2013

So Thankful....

This year was the first time I really enjoyed November and the whole thanksgiving season.

I admit I was often the German Grinch who felt that Thsnksgiving was a speed bump for me into getting into tne swing of the Christmas Season.

However something happened to me and it made it all very very different and while I do to know what caused this change I love it!

It started all with me feeling the need to clean out our Home. We drove trunk loads after trunk loads to Goodwill. Our Bedroom and Closet alone donated about 1000 Books and 15 huge black bags of clothing. Our Office donated lots of educational materials, books, Computers and Cameras.

Out of the downstairs Play and Gameroom came games, sewing machines, DVD's and video games.

This part took about two to three weeks and I can not tell you enough how liberating it felt. We still have ways to go with the attic but just starting it all was such a happy feeling.

Then came the FB Tradition of saying 'Thanks' each day for something in your life. That alone is so eyeopening as you start realizing how good life really is, not perfect but good!

Then came another very happy compromise :) I did start downloading my favorite Christmas songs to my Computer and syncing it with my iPad and iPhone. 333 songs that I have been listening to since about November 15. No I did not feel guilty as I love them and they make me feel happy and also grateful and that is what Thanksgiving is all about, right? I was validated as one of my Sattelite station switched to 'Holly' at the same time :) I also started to work on Christmas Cards and gifts, because taking stress away from December is also a good thing in my eyes.

So in the end it was my merging and being able to enjoy both that made this such a great month.

I think we all need to stop being critical towards each other in how is the right way to celebrate this season. After all aren't Thanksgiving and Christmas close to the same feelings? We are grateful and we should focus on giving and helping those less fortunate. So to me it does not bother me to see Christmas Trees go up or hearing Christmas Music. If it brings joy to someone it can not be wrong and truly it hurts no one....

I loved November, even the snow that it brought us so very early, and I am now going to dive into my beloved Christmas Season. No Season is more magical once you have kids! Connor and Alexander are truly the two people that made me believe again and my creativity and imagination goes back into high gear thanks to two little people that still BELIEVE ❤️💙❤️

Grateful to each of one of you!

Love,

R A C A