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

Friday, May 31, 2013

Color me RAD

I really neglected writing in here the last month....

I wish I had some news on my Sister In Law but sadly it is all pretty much the same. She might have added pneumonia to her list in the ICU and so far she has not been moved to the Neurology Clinic as we had hoped due to her not being stable enough to be moved.

My sister Carmen on the other hand is back working full time again and so far so good :)

I do have something new to add in regards to my family as of last week my brother in law is now in the hospital due to having water in his lungs. Right now there is no diagnosis yet but the ideas they are throwing around that could be the cause do not sound very good at all.
So this has been a hard year so far for the German side of my family and we really could use some change here...

On Connor's front we are doing great. He has been keeping steady and tomorrow he will be entering his first 5K run/walk. The boys and I signed up for this run months ago thanks to the motivation of my friend Pippi and we are so looking forward to it :)
I went on one 5K run already and it was a hoot :) Pippi, Heather, Amy and I signed up for the SHAPE Diva Dash in Boulder and it was so much fun. The best part about committing to those runs is the fact that you do feel motivated to train in-between ;)
The weather here in CO has finally shown some warmer temps and we love being outside..... Now summer break has started here in Colorado as well and it is very obvious to us in the increase of traffic we are faced with again up here in the mountains. We are back into counting Campers when on the go and so far I have seen 8 in a row and we are just warming up ;)
For my dumplings we are still in school until July but we decided to go on a lighter schedule then we are usually on. So one full day we split into half and it is working very well :) Language Arts and Social Studies one day and Math, Science and ready Set Go the next. The boys finish up each day around noon which makes them happy as they get to be outside until dinner time.

Oh and how often did I wonder if my boys would ever find a true love for reading???? Oh they read well at this point but they have never chosen to sit down and read a book that was not on the homework list.
UNTIL I brought home the book 'I survived a Shark Attack'! This book was inhaled in no time with both begging me to order more. So they anxiously awaited the Amazon Order of 5 new 'I Survived' Books and yesterday the shipment finally made it ;) Connor read 'I Survived 9/11' last night and Alexander read 'I Survived Hurricane Katrina' last night. At this pace they will be through the books in no time so if you have any recommendation in the same genre (true stories and life events) please please let me know!!!

Oh and yes I said I be talking about our fantastic Germany trip but this has to wait as I am truly way way way behind right now ;)

Wishing all of you a great start into the summer! I love summers in Colorado!

Hugs,
R A C A

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