Our Journey thru JDM and Life!: Home again and on the go.....

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, December 12, 2012

Home again and on the go.....

We made it home yesterday late afternoon after a good three day drive home with a stop in Boise ID and Salt Lake City UT. The boys have started a new travel game in as how many State Capitols they can see in their lifetime as they spend each a night now in two of them :)

The Salt Lake City UT was a special treat for us to see Temple Square. I have been to Salt Lake before but never downtown. Oh how absolutely beautiful it was ... Truly gorgeous and what a great timing to tour this area during the Christmas Season!
We ended the night with a walk downtown, "a very cold walk Downtown" ;) to have a final dinner out at the Cheesecake Factory. To finish a great meal with an Oreo Cookie Cheesecake for three and a Capuchino was heavenly.
The trip ended at 4:30 pm at the Lake George Pizzeria with our traditional coming home from a trip lunch or dinner :) as always the service was very very friendly and the food very yummy.

Today we had to get up bright and early so I could take the boys in for the MAPS State Testing.
Oh and we also learned that we had a nail in one of our tired and had this fixed this am... Driving all this way and realizing now how lucky we were to not end up with a flat tire on the side of the road.

Tomorrow will be even an earlier wakeup call as we have three doctor appointments looking at is :( two for Connor and one for Alexander. It will make for a loooonnnnng day :(
I went in to see the doctor today and are now on one of the same medications Connor takes every morning. Luckily I have to take the Prednisone (Steroid) for only three days while Connor has been on this now for three years! Crazy!

Have a good week and I be back in touch again soon as I am hoping to stay put for a while now :)

Hugs,

R A C A