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, August 19, 2010

Progress for Connor, Delay for Beate and a sad day for a JDM Family

Do you remember me talking about the braces Connor received at The Children's Hospital in March?
He was fitted with braces to have his feet straightened. To make them more attractive he got to pick a style for them and he choose a Spiderman design. Well, they might be as attractive as braces can possibly be but Connor never took to them. He was suppose to wear them each night but we were lucky to have him put them on for some minutes throughout the day.
I am happy to report that Connor has been wearing both or one of them for the last three nights! His new Physical Therapist, Lynette, told him how important they were and after being told this same thing by about five different people it finally clicked. Three nights ago he wore the right one, yesterday he wore both and today he went to bed with the left one on! We are so happy about this and I will gladly take it one foot at a time! :)

It is 9:11 PM right now and we should be home with my sister but unfortunately she did not make it out of Frankfurt last night. She missed out on the Dallas and Chicago flights by just two seats. Oh, the fun Non-Rev travel can be and on top of it it is not free of charge as so many believe. We still have to pay for our tickets but of course at a cheaper rate :) Now since we are from the same gene pool my sister does not give up easily and will give it all another attempt again tonight. First it will be Dallas again and 3 1/2 hours later Chicago.
My brother In-Law in the meantime will leave Atlanta at 7:10 AM tomorrow morning flying Stand-by to Dallas and then arriving in C-Springs at 9:10 AM and if everything goes the way I want it then we should have them both with us tomorrow night.

Our Family of four was busy today applying for new passports for Connor and Alexander and when we came home we found a letter from the 'Make A Wish Foundation' that Connor is granted his wish for a Disney Cruise :):):) All we need to do is send in copies of our 'passports', Drivers Licenses and proof of Insurance. This will be such a Dream come true for both Connor and Alexander and I love the fact that Alexander will get the same joy out of Connor's wish then Connor does.
THANK YOU so very much 'Make A Wish Foundation' for bringing happiness to our children in a way that we would not have been able to!

Today I will end my blog on a very sad note however. Through our JDM Facebook Friends we found out that a boy named Cole lost his battle with JDM last night. He was diagnosed 'just' three years ago.... Any news like this take our breaths away and make us pause because as much as it hurts to think of Cole and his family at the moment of the news you automatically turn and look at your child and wonder if this could be our future?
PLEASE once again I am asking you to reach out with your prayers and thoughts to this family. I can not and never will be able to imagine the pain they must go through right now. I only know of the fear of loosing a son and I know in does not compare.

Please, Please, Please Vote and Share again tonight. If a Cure is found it will be to late for Cole and his Family but it will save others. Thank You!

Hugs,

R A C A



1 comment:

  1. Thank you Anke for the update and so happy for the boys and their trip.
    So sad for Coles family. JDM gives you a full range of emotions...
    Hugs, Sissy

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