Our Journey thru JDM and Life!: Day 31 / 11 at TCH includes OT Video

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)-

Saturday, February 27, 2010

Day 31 / 11 at TCH includes OT Video

In Chicago we always considered Saturday and Sunday our 'off' days since not much happened on either of those two days. Here however Connor still has some therapy on the weekend but it is not on a time schedule so we never know when someone shows up.

Last night went well as Connor got another sleep-aid at 8 PM and at 8:10 PM he was asleep. He woke up once during the night and then even thought our night nurse told him she would let him sleep in today he was still up at 7 AM. Hospital habits might be hard to break.....

Today I will try to add a video that I took when Connor had OT. In Occupational Therapy the Therapist try to get him to move independably which means trying to get in and out of bed, getting himself dresses and able to eat by himself. The Video shows him trying to put his house shoes on. If I am able to add it, it will show below this post.

Connor's and my highlights of today were at first a very anticipated visit from Ron and Alexander. I went to pick them up from the DEN Airport and Connor even talked his nurse into taking him to the lobby to wait for us but then started to go back when it took to long in his own words. Ron met up with him in the elevator and we all ended up with a nice lunch at the cafeteria. It was wonderful having the four of us together again even if it was for just one hour. I can say both looked happy so I know the trip to Alaska must have been just wonderful.

The second visit came as a surprise when Matt, Mark and a friend stopped by with yummy Pizza's from Mark's Restaurant 'The Denver Pizza Company'. Connor loved it so much he ate a whole slice and asked for more and especially loved all the meatballs that came on it. I had s slice and it was Divine :)

Connor had on top of his OT also PT and two Speech Therapy sessions today. The news is that it is expected for Connor to leave the hospital without a wheel chair. I do not want to be pessimistic but I can not imagine him walking fair distances within two weeks but I am open to be positively surprised.

Hugs,

R A C A