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, December 14, 2012

How life can change in just seconds!

As a Home Schooler you worry about so many things....

Am I teaching my boys all they need to know?
Am I overloading them with the things I think they need to know PLUS the things that they need to know to pass the State Exams?
Am I pushing them to hard or to little?
Am I smothering them by us being together 24/7?
Am I stealing away a certain part of their independence by us always being together? (this one is hard for me to believe as I have the two most outgoing eight year olds I know).
There is one thing I know that is harder for my kids to do then others their age, and that is following the lead or listening as well to other Adults as they are to us as they truly are very used to taking their cues from me or Ron.

This morning when the news broke about the Shooting at the Elementary School in Connecticut I was sitting at my Computer paying bills. I read the first news reports and looked up at my boys, who were sitting at their school desks writing quietly in their school books just three feet away from me, with this huge sense of pain for the families and this sense of how lucky I am to be with my boys almost most of their times. Yes, to others our life might be crazy and you can say there is no way to protect them from everything BUT here is where I take my comfort now ... They are so little and while yes they need independence they also need protection in this very twisted world. You can hardly know anymore who one can trust or how stable someone's mind is and right now I am comforted that I am the one person that stands guard over my boys almost all the time, because to hurt them one would have to take me down first and that I know will not be an easy task to accomplish.

Huge heartbreak today in my family for the families that are suffering the most gruesome pain one can imagine in my mind: Loosing your child!

So I know all of us with kids will hug them a lot tighter again tonight and just what needs to happen to stop all this insanity is beyond me.

Hugs,

R A C A

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