Our Journey thru JDM and Life!: First Day out of seven ... :)

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, October 15, 2010

First Day out of seven ... :)

So we are officially on the go and the boys and I just checked into the Hyatt here in Denver.

I so want to Thank everyone for their well wishes for our trip.

For one Lee Dukes is an Angel in every way to take over and watch Apple and Tasha for us and keep an eye on our Home while we are gone. She has been heaven send and it is such a comfort to have our girls staying at home while we are gone instead of having to board them.

I also want to Thank the wonderful Thorpe family for their amazing send off and for all the wonderful advice about our Disney Cruise. They are true Disney Veterans and I feel I learned so much more from my conversations with Amy then I did from the books and you all know how much I love books :) of course my boys loved to hear from them as well about the Mickey Mouse Ice Cream that will be waiting for them and they have not stopped smiling since getting the news about all the ice cream and pizza that is ready for them to eat :)

Our Day today started early 'Thanks' to my dumplings who thought we should wake up when it was still dark outside so we could leave for our adventure. They had to hold out because for one I had to add my last touches to our packing but also they still had some school left before heading to Gateway Elementary for their reading assessment. The assessment went OK but as we knew we still have quiet some catching up to do. Both, Connor and Alexander, improved from their last assessment and the best news for me was that the teacher giving the test said she will help set up a program to help us out in any way possible for them to catch up. She said there was quiet a bit the school offers in a situation like ours so I left the meeting feeling much better.

So, and now we are settling into our Hotel Room and it is just beautiful. Lot's of room and since it is the start of our vacation the boys are already watching a movie on the large flat screen TV. So far we were offered a tour of the Hotel and received a phone call to see if anything was needed. It is all very touching and 'Make A Wish' truly is making a dream come true....

I am not sure if I find time to post tomorrow and I am pretty sure I am not signing on while on the ship but as you know there will be 100's of pictures to show when we return home :)

Hugs,

R A C A