Our Journey thru JDM and Life!: 20 January 1934

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)-

Thursday, June 27, 2013

20 January 1934 - 8 Juni 2013 💔

To this point in my life there had been only one date before June 8, 2013 that caused me pain and fear. That was January 11, 2010, when the word and world Juvenille Myositis entered our life and changed the course of Connors life.

Now I have to add June 8, 2013, as a date that changed my life again and caused me pain I had never known before. I admit I was always afraid of the day I would have to face this but nothing could ever have prepared me.

June 8, 2013, just 4 days after my parents 58 Wedding Anniversary my so beloved Papa, my hero my strength passed away.

If you look at the title of this blog entry you might see he was 79 years old. A good age as we have been told many times that just does not ring true for me. 79 years and about 50 years to short for me!

I admit I have always been a stubborn child, tne youngest of 5 children who always voiced as a child into Adulthood how unfair I found that I would get the least amount of time with my parents due to the age disadvantage.

As a teenager I told with a huge confidence that I do not wish to outlive my parents as I knew then that their death would not be something I could deal with. So I lived life to the fullest and never feared death which I admit only changed when I had my own family. All of a sudden I was faced with fact that I have responsibilities and need to be there for others as well....

Now looking back I wish I had spend more time with them and had come to Germany more then once a year. Even in the hospital during my Dads last few days he told every nurse, doctor, patient how he needed to get better do he coud continue to fly to the US and see us there. Just three days more and he would have gotten a new Heart Valve.....

Tears are a constant companion during the night but I know that during the day I need to be strong for my Mom.

I hope everyone knows this kind of love that I received from my parents all my life!

Hugs,

Anke 💔