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

Sunday, February 7, 2010

Praying for 'Hope' (this is not about Connor or anyone of us)

You all have been so amazing in your support for Connor and all of us as a family that I want to ask you for a favor tonight to put some of your positive vibes, thoughts and prayers in the direction of a little 12 year old girl called 'Hope' and her family. Hope is living on the same floor as Connor and pretty much right across the hallway from us. She was diagnosed with Brain Stem Tumor last July I believe (2009). It is inoperable and the tumor we were explained is like a grass root. It stretches all across her brain and even if they could remove some strains of it they would not be able to get it all.
Last Tuesday her brain started to bleed and the whole family has been here watching over her 24/7 since they were told that she is close to the end and that she will not last much longer. Hope has also been adopted but from Korea.

It really is heartbreaking living on this floor but it made us all grow up in different ways. Connor made the sweetest picture for Hope and was told from Hopes family that she loved it and that it made her smile which made Connor so happy....

So please send some thoughts of peace to this wonderful family who is in so much pain right now....
I know we have the best friends all around and i am now willing to share you :)

Thank You!
Hugs,
R A C A
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2 comments:

  1. txmomof2February 7, 2010 at 7:49 PM

    I will add Hope and her family to my prayers.

    ReplyDelete
  2. Lynn CFebruary 10, 2010 at 8:49 AM

    Hard as it is we all must remember that god has his reasons for calling his little sparrows home. I think he has a special place for them in his kingdom and will of course keep them safe. My prayers are for the familys who have to endure life without then, but hope they remember they will be together again in eternal life.

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