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

Saturday, August 18, 2012

Saying Goodbyes .... ;'(

As many times in the past we had to prepare and enjoy our last week with 'Oma and Opa', this time was hard on our emotions as well.
We are such a selfish bunch but getting ready to send them back home to Germany is never any fun for us!

Yesterday was the day of doom when we first said our Goodbyes to the Miller Family who was heading back into the direction of their home State, followed by a few minutes later loading up the Sequoia with Suitcases, Connor, Alexander, Oma and Opa and I for our drive to Denver.
Now we did not head straight to DIA but had to stop at The Children's Hospital first for some more Labs to be taken from Connor.
This process when super fast and Connor was such a Champ as they do not use any Lidocane or Icy Spray there but go straight at it with that little needle. No worries however for my JM warrior who only had a few tears but was so composed!
After this we decided to give Oma the one treat we had not been able to uphold until then: Eat some Seafood! Now we are in Denver and far away from the Ocean but we knew we could count on some decent food and fun at Joe's Crab Shack. It was a lovely day so we got to sit outside and talk while the boys played in the Beach Playground attached to the Back Deck. It was a relaxing time and we had a hard time getting up to head to the Airport.
Well, I have to admit we actually ended up with more time at lunch as the departure time my Mom had first given me of 16:30 was wrong as we were looking at a 17:50 departure :)

When we were getting ready to leave I saw I had an e-mail from Dr. Soep and the great news is that while Connor's Labs are not normal yet they are indeed heading into the right direction!!! I have also had some great interaction this past week with both Dr. Soep and Dr. Curran, who both have been in touch about Connor. So if you ever hear me refer to 'The Dream Team' then envision them as this is what Connor and I think they are :)

At the Airport all went smoothly. Oma and Opa were checked in in no time and they were set up for Wheel Chair assistance. We had time for one more stop to sit and Drink some Soda's and People Watch ... oh how I love this activities. We had some very interesting characters to watch for and so time flew while we all took turns making up stories about fellow traveler ;)
Then the part we dread the most came. Hugging and saying Goodbye! Connor completely fell apart ... he cried and sobbed from the time of the last hug until we reached Castle Rock on our drive home ... so close to 45 minutes when you include time to get to the car and out of the Airport. Alexander's last parting words to Oma and Opa were to please not die while they are gone from us!
I of course always have a hard time to say Goodbye to the two people who mean the world to me. 20 years in this country and the biggest heartbreak for me is always seeing them leave for home. 

The good news is we talked to them this morning and they arrived save and sound back in Weinheim. They are having some hot temps there and I am guessing they will miss the cool Rocky Mountains soon enough once they go to bed :)

Now here are some adventures we had since my last post and before we had to split ways:
On Thursday was Kim's youngest son's Birthday so after some high emotions in the am we all headed to the Cave of the Winds for some fun adventures. The Birthday Party included the Cave Discovery Tour (which was fun again as the last time the boys and I went there was with Oma and Opa 5 years ago!), very educational and my heart goes out to all those poor white nosed Bat's in the East. While I am very sad for them I hope they keep it in the East and keep our Western Bats safe here!
We then rode on the Bat-Line, the Zip Line that was put in I believe this summer. Fun, Fun, Fun ... unlimited rides and while everyone went twice I got somehow lucky to go three times ;)
Then we went on the Wind Walker Challenge. Now that was quiet an experience as you are put into a harness and then walk tight robes up and above the Canyon. All here went well other then Alexander freezing at one point in the middle of the robe course. Good thing they had great Employees who knew how to make kids and adults relax and have fun. I think we will be going for the Season Pass on this one next year as it was a great exercise that focuses on balance and coordination :)
The kids also got to look for more Gem's and Fossils and over all it was a Birthday Party to remember.
We ended with a very tasty lunch at 'Hell's Kitchen' Pizza in Manitou Springs where we all had the 666 deal. One Slice, three knots and one drink ... YUMMY!
You would think with my hurt hand from the Devils Playground I would stay away from anything that has the word 'Hell' written in it BUT since the Gentleman, who's son we took down Pikes Peak from Altitude Sickness send me a beautiful e-mail to Thank me and calling me ... yup me!!!! a Saint! I figured I was save. And I was right as I did not get sick or develop food poisoning ;)

Kim and her boys then headed to a Rockies Game in Denver while the boys and I met up with Ron, Oma and Opa for a going away BBQ Dinner. Finally after 9 weeks here they got their wish of BBQ Baby Back Ribs. It was a nice and quiet dinner and the only thing that stays a concern is Ron's recovery. He was in a lot of pain and still is.

So off to a new Chapter in our life and the trying to get back into a routine and school schedule.
Today the boys did a wonderful job writing those long due Thank You Cards and also working on their last Book report for this summer ... part of their punishment from some of the behaviours they exhibited last week will make this report a 50 sentence long master piece. I would be lying if I told you they were thrilled about this but then neither was I about some of the lost manners and acting up behaviors they brought to the surface last week.

I baked a Cake today and are looking forward to a normal day to day schedule. 

This is a very long post but I don't want to end without saying 'Happy 60's Birthday Kathleen Burkhardt' You are such a inspiration and how I will always cherish the e-mails and support you have send me throughout our fights against JM. Not only is she smart as a whip but she has a huge heart and adopted the boys in her circle of Family. You already know that anyone who 'gets' my dumplings has my heart!

Also a HUGE Thank You for the Carpenter Family who send those gorgeous and already very much loved Quilts to the boys. The smile Alexander has when he realized he was also getting a gift was priceless. The letters to the boys from a fellow JM and Twin Family were so touching and the message was right to the point: JM KIDS ROCK!!!!

























Hugs,

R A C A

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