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)-

Hope

Hope

Tuesday, July 13, 2010

Steamboat Springs & Aspen Get Away ...












My lovely husband surprised me in the beginning of July by booking a weekend
get-away to Steamboat Springs and I can tell you in all honesty that we as a family have traveled to many countries but never have I looked forward to a vacation as much as this one. It was just three days but the need for us to get away as a family and to just have fun was never as important as this time.

By now you know how involved and pulled in we as a family became when Connor got sick with a disease that limits everything what we used to know and used to do as a family. We had to adjust in so many ways because the life we had for the last six months has very little comparison to what we considered normal to us before December 20009 and JDM. To the outside world I know that Connor looks so well now and only when you look close you might see his 'handicap' at this point. We are lucky (I know some of you don't like this term but it fits how I feel perfectly) in regards to Connor's progress compared to the other families we meet who have children with JDM. I also know to be cautious because I heard from other families who's children made great progress initially and then faced a flare-up that threw them back to the beginning. Of course you know me by now that I am still somewhere inside believing that this will 'not be us'!!!

We had three beautiful days in Steamboat Springs, visiting the 36th Annual Arts Festival, getting up bright and early the next day at 5:30 AM to watch the 30th Annual Hot Air Balloon Rodeo and of course we enjoyed to explore Steamboat Springs by way of Gondola, Pool Time and some great local Dinning experiences :) It was just what our little family needed and I am so glad we got this time together to recharge :)

I have to admit I was entering this summer with some depressive moods due to hearing all the travel plans from friends and seeing pictures of some wonderful family vacations friends of ours went on. Oh, do not think for a minute that I was not happy for them but I also had this voice inside of me that kept bugging me as to why can't we go somewhere for more than one night and have some fun as well?
Ron and I talked about this earlier this summer at how amazing it is to live in a State that is a huge travel designation to so many people in the Winter and Summer and how can we disregard that we live in one of the most beautiful places and only have to go in the car for a couple of hours while others have to drive long distances or fly here? So I am in a real Colorado set of mind right now and have to say it is wonderful to check off all the places I wanted to get to know. We have so far explored Durango, Pagosa Springs, Silverton, Ouray, Denver, Breckenridge, Vail, Avon (Beaver Creek), Steamboat Springs and Aspen, and I wish I could tell you which one I prefer. I loved each one of them for different reasons, so if you like to hear my opinion on all of them just e-mail me :)
We came home through Independence Pass which for those of you that have used this Pass before know it is just GORGEOUS! we took so many pictures and pulled over so many times - it truly shows Colorado in such a beautiful picture :)

Connor did really well on this trip and we didn't even bring his Wheel Chair with us. We figured we would not push it at all and that we would take plenty of breaks along the way. The only times he complained was when he got bored :) This is when he asked to be carried and instead we told him to sit and rest for a while. So over all we are getting the hang of going places and being mobile with his medications as long as we take our trips in between infusions and Injections :)

We took about 400 pictures on our trip and we are happy to be home now so the boys can go to Camp this week and also to spend some precious time with Ron's Sister Sam and her husband Ron. They are on their way to move to Ohio and I am hoping this means that in the future I get to set foot into one State I have never been to .... :)

I do have some anxious news today but really have no idea yet what the prognosis is until I talk to my Mom tomorrow. My Dad was admitted to the hospital today and tomorrow at 8 AM he will go into surgery for his Prostate, if we are lucky. The Doctor mentioned to my Mom today that he is concerned about my Dad's Bladder and asked to have permission to take out a tumor if he finds one. It does not help our mental serenity that my Dad's roommate is there due to Bladder Cancer.

How I wish I could be in Germany right now to be there as some support for my Mom and Dad and of course knowing what the next three weeks look like due to Connor's medical schedule I am feeling a bit helpless .....

Tomorrow I will write about the boys Camp experience so far and all I am going to say now is that Day One seemed to have been a success :)

Hugs,

R A C A

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