Our Journey thru JDM and Life!: Our Adventure to the movies :) 01-22-2010

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)-

Friday, January 22, 2010

Our Adventure to the movies :) 01-22-2010

Trust me when I tell you I will NOT post everyday!!!

Today however I will post because it was an important day in our little life's. Ron left today for his first trip heading to Vancouver, Canada and it will be strange not having him home after being spoiled for over a month of having him with us. I know I will love the day when he retires! And second we also did our first real outing since Connor got sick about 1 1/2 months ago. He kept asking to go to the movies and I figured there is no way in knowing how it will go unless we give it a try.
I was lucky however that my friend Jennie and her boys humored my short notice txt to come and go see the movie with us. It sure made it easier having an extra hand :)
Overall it went really well. Connor walked around the inside of the theater a bit and I carried him up and down the stairs. He also is quiet a negotiater when he tried to get Popcorn (which was not going to happen due to his difficulty swallowing). He told me it was okay as long as he got either Cotton Candy or Ice Cream since he would have no problem eating that. So ice cream it was for both my dumplings.

Also some good news is that starting tomorrow Connor will get liquid Prednisone so we do not have to crush up pills anymore and he won't get the bitter taste of pills mixed with Apple Sauce.
There also was a fax waiting for us at home from his doctor that said we can apply for a Handicap Card for our car. Never thought we would get the privilege of getting to park in the handicap spots but it sure will make it easier not having to carry him across the parking lots anymore.

Alexander loved playing with Zach and David for the short time before and after the movie and it was fun watching him run and play. Oh, and we did see the Chipmunks movie.... I tried my best to get into Avatar 3D but it did not work out :( JUST KIDDING :)