Our Journey thru JDM and Life!: 1-11-2010 to 1-11-2012 two years with JDM

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)-

Wednesday, January 11, 2012

1-11-2010 to 1-11-2012 two years with JDM

Today is Connor's two year Anniversary of his Diagnosis with JM. By then he has already battled the symptoms for a month but until this day we had no clue what we were battling.
Of course I remember the Day so well when the Phone Call came in from Dr. Stephen Smith, Connor's Neurologist. I recall writing down the name 'Juvenile Dermatomyositis' JDM, but having no idea what those words meant.

I then recall calling and e-mailing my friend Jennie Olson, who not only has been the kind of friend you consider Family but who is also an amazing Nurse with an extremely impressive resume in Pediatrics. She knew right away what it all meant and was a world of wisdom and information for us. I know those first few weeks I would have felt lost if it had not been for someone to give us an insight. Of course down the road we found curejm.org and the amazing people that volunteer their time, money and compassion for this cause and for the mission in finding a Cure. With CureJM also came the book 'Mysositis and Me' and some sleepless nights followed after reading it and worrying about the journey ahead.

I am not going to go to far on this today because most of you have been with us on this journey from the very beginning so you know what followed.

In so many ways thinks come back into a circle and today it was again Jennie who put the last two years into a post on Facebook:

Jennie Gulde Olson

Was thinking of the email 2 years

ago today . Not only has Connor come so far, so have
you all! The incredible things you have ALL done to fight
JM. All the travel, doctors appts., emails, phone calls
, flights, mail, bills, friendships, sleepless nights, having
strangers in your home, learning about and caring for a
port, shots, meds and so much more. Hats off to you all.
Love you guys and cheers to Connor! One incredible

family!

This is the part of this journey I am the most grateful for. JM was Connor's fight BUT it brought to light the friends and family that took the news and stepped forward and were a force along with us. There are many of you and you know who you are!
There were the friends and family we thought would be there but who had no idea how to handle this challenge and who sadly moved to the background or disappeared completely. I used to be sad and angry about this but not anymore as I realize we all move in different ways and this was not a path some were able to follow.

Thank You to all of you who stood by our side. You were our eyes, voice and backbone so many times!

Love,

R A C A