Our Journey thru JDM and Life!: Vacation Time with Friends and Back to School Mode ...

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)-

Monday, August 9, 2010

Vacation Time with Friends and Back to School Mode ...

I had to read up on my last post where I left off and I guess I skipped a couple of days again...

The Tossell Family arrived in record time and it is amazing how a family of four which includes six year old twin boys can make the drive from Keller, TX, to Lake George, CO, in 12 hours without any problems....:) but the most impressive part is that they do this with a most beautiful car, the Jetta Sportswagon TDI that has no DVD player in it. Now to all you parents out there I want to hear how many of you would brave a 12 to 14 hour drive with six year old twin boys and 'no' movies? Dylan and Ryan are just beyond amazing! :)

Ron had to leave on a trip the next morning which went form a three day trip to a four day trip by now. We just found out that he got reassigned to Aruba tonight for a 15 hour layover. He spend last night in St. Thomas and was suppose to end up in Miami tonight and come home tomorrow but now we will be lucky to have him home sometime Wednesday afternoon :( Airline life at it's best ... NOT....

Yesterday I had the pleasure to meet Davids Parents and Heidi's In-Laws, Gary and Sherrie, and we spend a nice relaxing afternoon here at Home together before heading out to a yummy Mexican Dinner in Woodland Park.

Connor and Alexander are both doing really well those last few days and of course they are very happy and over excited to have Dylan and Ryan here. How many times I have now heard that they are 'our bestes, bestes Friends forever' I can not tell you :) They are a match made in heaven and this is of course not to say that they don't have their issues with each other but they have the same energy which is something rare to find :)

Tomorrow we are gearing up for an early morning of OT and Speech Therapy and if the weather hold a trip to the Zoo afterwards.

Can you believe that we now had 18 days of afternoon Rain Storms in a row here in Lake George. Our Smokey Bear Sign in town has been on 'Low' for a few weeks running and I have never seen this during a summer in Colorado. Our Driveway is of course suffering from all this rain but on the bright side we are not worrying about any wild fires in our area anytime soon :) Wish we could send some of this rain to Russia since they could need a break!

I am going to end today with a note again to remind you to please Vote and Share the link through e-mail or Facebook. We are currently in the 6th position. The link to Vote is as always on the right hand side of this page.

Thank You! Danke!

Hugs,

R A C A