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, March 10, 2010

Hope ..... 3-10-2010

We so fell in love with the Fuller Family and having met Hope changed our families life. Connor and I talked about Hope this morning and he is sad of course but our hope is that we will be allowed to stay in touch ...

I so hope it is okay with Hope's family that I post this message but I know so many of you that follow our blog have asked me about up-dates of Hope and so I am posting the care page I just received ..



Angel

Posted 49 minutes ago

Angel
Spend all your time waiting
for that second chance
For the break that will make it OK
There´s always some reason
to feel not good enough
And it´s hard at the end of the day
I need some distraction
or a beautiful release
Memories seep from my veins
Let me be empty
and weightless and maybe
I´ll find some peace tonight
In the arms of the Angel
far away from here
From this dark, cold hotel room,
and the endlessness that you feel
You are pulled from the wreckage
of your silent reverie
You´re in the arms of the Angel;
may you find
some comfort here
So tired of the straight line,
and everywhere you turn
There´s vultures and thieves at your back
The storm keeps on twisting,
you keep on building the lies
That make up for all that you lack
It don´t make no difference,
escape one last time
It´s easier to believe
In this sweet madness,
oh this glorious sadness
That brings me to my knees
In the arms of the Angel
far away from here
From this dark, cold hotel room,
and the endlessness that you feel
You are pulled from the wreckage
of your silent reverie
You´re in the arms of the Angel;
may you find
some comfort here
In the arms of the Angel;
may you find
some comfort here

My beautiful baby girl made it to heaven this morning officially at 2:58 a.m. I kissed her goodnight at about 11:30 and fell fast asleep. Apparently she decided to wait for me to rest before she chose to rest herself.

We are grateful for her life and find strength from your prayerful support.

Peace, Deb

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