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

Friday, January 6, 2012

First out of eight Snowboarding Lesson in Breckenridge












One could have thought our dumplings would be excited about starting their Snowboarding Lessons in Breckenridge today but nothing had us prepared to see both of them standing next to our bed at 2 am fully dressed to head to the Mountains in Breckenridge. Yes, I did have the alarm set for 5 am and that I thought would be painful enough but 2 am it was and there was no going back to sleep for our super excited boys :)

Oma, Opa, the boys and I left the house at 6 am to head to the Lake George Charter School and the School Bus pick-up, and by 6:30 am we were on our way towards Fairplay for the one stop on our way to Breck to pick up all the kids gears. The boys loved riding on the bus and we loved following in my car :)

All the little ones and helpers made it up the Mountain in Breckenridge via the Gondolas by 9 am and the children were divided into their groups and to meet their instructor for the next eight weeks.

The boys are in a group of 5 and Brad, who is teaching them has been Snowboarding for 12 years and had started at the same age all his little students are now - 7. Talk about a dream Job when you are a teen!

Here is a line-up for Connor and Alexander.
Connor was very focused but was also a bit timid. Alexander was fearless and a dare devil. I think if both trade out some of their temperaments to each other we have reached perfection. I have to say by watching them snowboard for a bit over 4 hours today they truly loved every minute of it and were so enthralled that they did not want to stop. 
On our drive home all we heard was how much they loved it and that they wish they could snowboard every day of their life!
Well, lets see how their little legs feel about this tomorrow ;) also it was so surprising they both fell asleep on the way home - NOT :)

As it was they both went to bed at 7 pm tonight after being spoiled from their Papa with yummy Papa Murphy's Pizza. Next week Ron will go with them as well and they can not wait to show off their new talent.

Thank you once again Park County, Breckenridge and the most wonderful Parent Team out there from Lake George that is making all of this possible. Everything was so organized and we even got spoiled with Hot Chocolate, which was great considering the pricing of the food was of course very fitting for a Ski Resort ;) $9:50 Hot Dogs anyone? ;)

Oh I do have to say I have always loved Breck and I am still in love with this town, maybe even more so now for Ski Season. The Lodge was wonderful, there was music and the crowd was young, vibrant and hip. My parents and I could have had a Jaegermeister out on the terrace but since we were watching over our little ones we decided to passed this time around. Maybe when Ron and I hit the slopes this will come in handy ;)

Hugs,

R A C A

2 comments:

  1. It sounds like the boys are really enjoying snowboarding :) I wish Dominic could try, but alas, he has to wait at least another year.
    Hopefully, next week the boys will sleep a little later for you. It must have been a long day for all of you.

    I look forward to hearing more about the snowboarding and the boys.

    Love and Hugs,
    Susan

    ReplyDelete
  2. Oh how I wish and hope Dominic will get to this point as well. You both are always close to my heart because Dominic and Connor had so many of the same battles initially. I am thrilled about the progress Connor is making but heartbroken when this is not the case for his JM Friends!!!

    I admit you got me in regards to asking for Doctors approval as I did not even think of it. I guess as it is not a contact sport but today they are both very sore all over so the muscles had a lot of work to do yesterday. I kept up on Connor's pain meds and are hoping for the best! Hugs sweet friend!

    ReplyDelete