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

Monday, June 11, 2012

Family, Friends and all around a fun time :)

Yesterday Andrea and Birgit flew back home to Germany after two very busy and fun weeks here with us in Colorado.
In 14 days we laughed tears, caught up on Friends and Family and also life in Germany.
It was great to see how much more the boys picked up on their German when they wanted to communicate with them :)

It was a very busy time with very little downtime and I just hope they both can recover at home :)

In 14 days we saw and toured Cripple Creek and both Gold Mines plus the Chili Cookoff. We shopped in Castle Rock and toured the Airforce Academy, which unfortunately for us but happily for a new couple we missed the Protestant Church due to a Wedding. Then there was the day when Connor's Medi Port was removed!
We hiked the Incline in full heat at a 'late' departure of 8 am (if you know the Incline you know that is a big no no as it gets full sun with NO shade). We drove up Pikes Peak in sunny weather and drove back down in Snow and Ice. Had a breather at Bierwerks with some Radlers and BBQ. We walked around Manitou Springs as well as a tour through the Garden of the Gods. We also spend two full days at the Rocky Mountain National Park which was heavenly and also brought us to our knees in tear of laughter about the place we chose to spend the night at. A true nightmare that only our Spirits could turn into an Adventure.
Of course we also had to fit in a day at the Olympic Village :)
On our way to Estes Park they got to see Breckenridge and Frisco, as well as Golden and Boulder. On the way home we stopped at the Red Rock Amphipien Theater and enjoyed watching people excersise. I have to say we were also proud of our milage we hiked at the National Park which in two days could easily add to 10 miles of high elevation and steep climbs and drops.
Now add to this all the fun we had at home:
There was our 4 Wheeling Outings, Paper Plane Competitions, Game Nights, a Basketball Tournament, Drawing and Reading Lessons, Music Bell Lessons and of course Marshmallow roastings.
The trip was completed with a stay in Denver where we walked around 16th Street and looked at the Capitol Buildings during a 95'F heatwave that we ran away from with a visit to a very busy Hotel Pool (wonder why?).

Truly there is a gift with spending time with friends that have been a part of my life since birth and whose parents I have called Aunt and Uncle since I started talking. We grew up together and to me they are family and my cousins even if blood would proof me wrong!

I do want to Thank my Husband for giving me the freedom to be on the go for 14 days and for having to deal with a house in uproar and without schedules! Thank You so much! To be surrounded by three women who talk German nonstop is not an easy feat!!!

Now I am off to catching my breath and getting the boys back on a school schedule and the house set up for Oma and Opa's arrival in just 5 days!

No good thing however goes without some heartbreak. Due to this full packed two weeks I missed my chance to say goodbye and hug my sweet sweet friend Jennie Olson who just left Colorado for their new assignment in Kansas. How I will miss having her close!!! I do not have that many close friends and when you loose one once again to distance it just chances the dynamics BUT NEVER the connection. We will just have to make bigger efforts to see each other but there is no doubt in my mind that we will see each other again soon.
Love You Jennie! and Miss You already! What a comfort and rock solid Foundation you were for me during the last three years. Life would not have been the same and I truly love and adore you!

Hope all of you are doing well and if your summer is as busy try and catch a breath here and there!














































































Hugs,
R A C A

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