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

Tuesday, November 9, 2010

Therapies again and again plus Show and Tell

Am I really impacted this badly by this getting up early in the morning for Therapy due to me getting older or just because we are getting so exhausted from the constant Therapy Sessions Connor has?
Now do not get me wrong that I am really grateful he gets all this attention to help him get better without any argument from our Insurance! but those three hours in a row and having to leave at 6:45 AM is really painful for the boys and I :) Alexander actually slept in until 10 AM a few days ago!!!

So far Connor is still doing really well in OT and Speech. In PT he is making small improvements and today he walked for 10 minutes on a Treadmill with his feet pointed straight, he also tried to talk Miss Janette into giving him a better number in regards to his feet but she can only push so much and there really was no change from last week even thought he wears his braces religiously now...

So if you are one of my rare friends who is superstitious here is a little curve ball for you. Last year in early November both our boys came down with a cold and a fever about four days apart. By mid November Connor pointed out a tiny little plantar ward on the ball of his foot. By the end of November he complained that his foot hurt to walk on, then his knees and legs and by the end of December he was not walking anymore.
Well, I am NOT superstitious per say but here is Alexander sick from some kind of bug for the last week, he just showed me a little plantar ward on the ball of one of his feet .............. I better do not hear him say that his foot hurts, his knees start hurting and his legs are giving out! I am actually really happy we are heading to D.C on Sunday!!!!!

After Therapy we made a very fast run to COSTCO to see Jennie and shop a little for our trip to Germany and when this was done we rushed up the hill for Connor and Alexanders Show and Tell at Mrs. Struble's Cottage School. The boys got to talk about our Make A Wish trip and I got to explain a little bit what JDM is and what it can do to a body. The kids were all wonderful and very attentive. It really was fun and I am still hoping that maybe next year the boys can be a part of it again for two days a week.

So and right now we are home resting a bit until we have to leave to pick up Ron and Colorado Weather is giving us quiet a show. We came home three hours ago and it was in the high 60's and now it is almost 30! Winter Snow Storm is predicted to hit today and I saw some news that Larkspur is getting snow already. So I am guessing I will be leaving the house in one hour for our drive while snow starts falling. Happy once again that I have a husband who always makes sure I have a great car to drive no matter what weather is thrown our way.....

Before I finish I am sending some thoughts of support to a friend of mine who is going through a very difficult time right now!!!
Hugs,

R A C A

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