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

Thursday, November 25, 2010

Thanksgiving.. our tradition in being untraditional :)


The boys and I arrived Home about 2 1/2 hours ago and our trip has been magical. I have to say that traveling on an actual holiday is truly a pleasure. No lines and everyone was in a good and pleasant mood. The boys and I received our Standby seats even before boarding began and we all sat together in row eight :) I am jumping ahead however because I want to say how much fun we had as a family in Texas yesterday.
I admit I was a bit nervous about heading to Texas for just one day right after an Infusion plus traveling so close to our trip to Germany had me worried about feeling to rushed. However it was such a fun day that I am really glad we went.
Ron has been flying a lot this year trying to keep our heads over water with all the additional expenses we are facing and so finding time to do something just as a family has been sparse. We were of coursed blessed to get the Make A Wish trip and now being so close to our annual and traditional vacation to Germany but never less to have no interruptions and just be the four of us is very precious for us. We ended up going to the Grapevine Mills Mall which is such a fun place considering it is a Mall. I have such great memories off spending time with the boys there when they were small and still in their twin stroller. Ron had not seen the movie Megamind yet and so the boys, who have seen it already, surprised Ron with tickets for the 3D version of it. I have to say I used to be sceptical about 3 D until I saw the same movie now in the regular version and the 3 D version. 3 D truly was the better experience :) We ate lunch and had Coffee and Cake at the Mall and then headed back for an early night since wake-up arrived at 5:30 am for all of us. We all headed to the airport with the boys and I heading home and Ron heading on his next 3 day trip.

I am so looking forward to Tuesday now when we are heading to Germany but I am not to excited about the next four days because I feel so far behind. I want to mail some Christmas Boxes and our Christmas Cards, I need to pay bills :(, pick up and sort all of Connor's Medication so we will be covered for the next two weeks and then clean the house so we won't have to come home to a mess - haha. Plus of course I need to pack ... I am really good at packing for three day trips but the one to two week trips keep me on my toes :)

So, we might have skipped a Traditional Thanksgiving but I am thankful never less! I am always so grateful for the amazing family I have, starting with a husband who is and always has been my Rock. I am so Thankful for all the amazing and supportive friends I have and this year I am especially thankful to Connor's amazing Doctor's, Nurses and Therapists!
So and last but not least I am thankful each and every day to have the honor of being in the presence of our boys. Never will I be able to put into words how much I love them and how much the have changed who I am....

So Happy Thanksgiving to all of you!

Hugs,

R A C A


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