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, December 8, 2011

How busy is a Christmas Season with 7 year olds?

VERY BUSY!

So we are entering the fray of Christmas activities starting tomorrow. Some preparations have started over a month ago with the Theater Play the boys are a part of. This performance will be shown on Saturday and is called 'A Child shall lead'. I think the boys will do great but you should see how happy they tell me they will be when it is over. They told us acting is to much work and are aiming now towards sports activities as they think they are not as much time intensive -haha

So tomorrow bright and early we are heading to Fairplay to have the boys fitted for their Snow Boarding gear. Lessons will start in January but the school wants to have all the kids set up with Ski's or Snow Boards plus all the other equipment. Connor and Alexander had the choice between Skiing and Snow Boarding but choose the later as it seems to be the more modern way to go :)

School will be out on the 21st and our dumplings will be part of another little play that Mrs. Struble is organizing. They love this one because there are no lines to learn. Connor will be a Mouse and has to snore and Alexander will be a Dad looking out the window for Santa and his Reindeer.
This Saturday before they first Play they also have German School and Nikolaus will make an appearance there as well. Then we have our weekend in Denver and sometime after Christmas I am sure we get to all sit back and relax again.

I am so so so grateful to have my parents here who are helping us so much. I am sure they think our life is very crazy right now!

As to some JM news we received a call today from CMH in Chicago and Dr. P and Dr. Curran would like for us to bring Alexander to Connor's next Appointment. It looks like they want some more lab work for the Research Study and we know Alexander will be thrilled to come along as he loves Chicago, even thought he is not a big fan about having his blood taken.

So hope all of you find some quiet time during the next couple of weeks, I know I will try my best to find some for us as well.





Hugs!

R A C A
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1 comment:

  1. SusanDecember 8, 2011 at 10:08 PM

    Anke, It sounds like you have a very busy schedule. I am sure that the plays will be very good and the boys will do a wonderful job :) I hope you do find some time to relax, if not before, then right after Christmas. I hope you all had a wonderful St. Nikolaus Day!

    Wishing you and your family a very Merry Christmas and a Happy, Healthy New Year.

    Love and Hugs,
    Susan and Dominic

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