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

Wednesday, February 6, 2013

A Funeral...

Today we went to the Memorial Service for Rick Thomas who passed away last week.

It was very hard to go, as selfishly each Funeral I attend in the last couple of years brings me face to face with my biggest fears.
It was so touching to hear all the stories about his life from his best friends and his sister and my heart broke when I looked at his Parents. I know I am on a different level in many ways when it comes to Religion but no matter what your believes are there is something fundamentally wrong when Parents outlive their Children!
the first time I was faced with this fear was in February 2010 when I met Hope's Family and when we lived on the Oncology Floor for almost 4 weeks. 
To imagine the pain and the loss is truly something that makes me sick to my stomach ... I knew if I was faced by this my heart would break to a point that was not repairable anymore. Yes, life goes on but I believe only a shadow of your formal self will go on ...
Then there were the children ... three beautiful children that Rick left behind, who will not grow up with a Father on their side and of course they be told about him and what an amazing person he was ... however, in my eyes, no stories will replace the Father they lost. 

Which brought me to my second biggest fear: Loosing my Parents!
Now you say' "Well that is the nature of things." Especially what I just wrote above and I would agree BUT not in my heart......
I am the baby of the family and I truly can not picture or imagine not having my parents here. I am who I am because of them and I start getting tears in my eyes just thinking that they would not be just one call away or a 10 our flight away. 
Before I became a parent I always hoped to NOT outlive them so I would not have to deal with the loss, and I lived life in my teens and twenties that pushed the limits often and I felt as if I had nothing to loose and loved the thrills of pushing life to its limits.
That all changed when I became a Mom and in my world everything shifted. Now I was not just responsible for myself but I need to be there, watch over and protect my babies....

So this was a hard day but nothing compared to what the Thomas family is facing right now!

Hugs,

R A C A

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