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, June 23, 2012

Oma and Opa :) Wildfires and more ....

As always and with much repeating on my part 'boredom ' is truly not a word in our vocabulary. 

Oma and Opa arrived without any incidents in Denver, well the only small hiccup was the closing of DIA for a bit due to Lightning and that made LH and other planes circle for a while but they did land with only a small delay.
This time my parents took advantage of the Wheel Chair service which both were in need of. My Dad has a very hard time walking at this stage and my Mom hurt her lover back a couple of months ago which in turn pinches a nerve that radiates down her left leg and makes it hard for her to walk as well.

We knew we would take it easy and stay home for a while so they could settle in and get used to the high altitude again. This is always easier for my Mom then my Dad. My Dad has a harder time keeping his oxygen levels up so we measure them very frequently.
Sunday, Fathers Day, started out beautifully. We had breakfast on the Back Deck with sunny blue skies. Then we settled in for a noon Soccer Game of Germany playing against Denmark. At around noon we heard a loud noise as in people shooting at the Range again back towards Eleven Mile Canyon, but we did not think any of it. However a couple of hours later I got a msg from my sweet friend Pippi about a new fire that broke out in Eleven Mile Canyon. Now this one is a lot closer to us as we are only about 3 minutes drive from there. I went outside to look and the view we had from our house kind of took my breath away. Now luckily I had a wonderful news hot line through texting and FB messages from Pippi, Heather and Jennie. I went and started packing up and staging all our important belongings in the hallway. This included all our important Papers (Passports, Birth Certificates etc), Photos, Videos and Clothing's. I was very worried about where I could take our four legged babies but even there I was truly humbled by getting the offer of boarding them with a classmate to the body parents in Woodland Park. So we sat all prepared for the possible evacuation notice an the waiting game started.....
It was hard going to sleep Sunday Night as we had to keep all the windows closed due to the smoke but it was so warm that it really was not pleasant either way. 
On Monday morning I woke up to a txt that we most likely have to evacuate and that a Sheriff would come to the house to notify us.
So I backed up the cars to the house for easy loading and we sat back to wait again. I admit i was sitting there hoping we would have until noon so Ron would make it home from Alaska and could help us pack up plus add an extra car to load up.
The great news is that once again the Fire Fighters came through and it is now Saturday and we are still in our house!!!! I am still packed up to some degree because I figure we are in June now and we are looking at two to three more months of possible fires in our area. Lake George is a huge draw for campers due to the Canyon and its Fly Fishing haven as well as Eleven Mile Reservoir. I know this might sound discriminating but I am not sure how much I trust some of the vacationers that come out here from the Cities. We are super dry and it seems the fire ban does not stop people from building camp fires or from smoking and dropping their cigarette butts wherever they like.
The rumor is that this latest fire was started by someone doing recreational shooting and hitting a Propane Tank by accident!
So now not all was bad this week as we as a family still know how to have fun. On Sunday night we went to Lake George Pizza and sat on the back deck to watch all the Fire Fighting activities and still have a yummy dinner. We also enjoyed the live music entertainment and loved singing with the whole Restaurant occupants John Denver's song, Country Roads, take me home :)
We also tried to get away from the smoke as much as we could by enjoying some fresher air in WP and visiting Bierwerks as well as Denny's for Dinner.

I admit after living in a packed up home for a week I started thinking we might as well go somewhere if we do live out of suitcases anyway. So my dream was us driving to Alaska to be there for the birth of my second Grand Daughter and seeing Niki and Harlow. My plan was leaving Monday and taking four days to get there (I think it is a 40 to 50 hour drive), then we would meet up with Ron on Friday who has a flight up to ANC and leave again for home on Sunday. Well, I must have been the only one that thought this was a great idea as I was getting this 'You are crazy' look more then once. On the end I had to scrape my plans due to my Dad's health who was battling some Allergic reaction and had a rash all over his body plus swollen legs and feet. Ron convinced me that sitting in a car for that long was not a smart move so I did back down. The happy news is that we got the allergy under complete control with Benadryl Pills and Cortisone Creams!
I sat back and with Ron's help refocused into a getaway that was closer in range and my eyes landed on the map of South Dakota. So off we go for a four night stay in Custer, SD....

I am sad to not be able to see Niki but even I have to admit this would be a long haul with my 78 year old parents and two eight year old boys. Still doable but maybe not as easy as I thought ....

Thank you so much to all of my Colorado, Oklahoma, Kansas and Texas Peeps who opened their hearts to us and offered their help if we had to evacuate. I truly had so much comfort during this week due to this. I knew as long as all the people and animals I love are safe we would be fine. A house is just a house and while I love my home it is not important to my happiness and life. 







Hugs,

R A C A

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