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

Sunday, July 1, 2012

More Wildfires and a much needed Escape to South Dakota!



The biggest news for this past week has been the Birth of our newest Granddaughter sweet sweet Cadynce Lynn. She was born at 10:17 am on June 25 and was 6lb5oz big :)
I am so proud of my beautiful daughter Niki who has been so strong through the last few months! I wish I could have headed up to AK but for now I am happy Ron was able to head up and see them this weekend.

 So many of you have followed the news about the Waldo Canyon Fire that broke out right after my last Blog entry on Saturday 23, 2012, near the Garden of the Gods in Colorado Springs.
It has been absolutely heartbreaking how fast and furious this fire has been! Within hours there were evacuations in a grand scale. My so beloved Manitou Springs was included in the evacuations by Sunday ...
So far two life's have been lost and about 350 Houses have been destroyed and the pictures that are posted everyday and the Video footage is indescribable.
As sad as those numbers are you have to be here to realize how much worse it could have been if not due to the Hero's we have here in our Fire Fighters. The unrelenting fight they are facing and the horrid conditions is truly awe-inspiring. I have always loved Colorado, even before it became our home but now I am completely in love with the people living here. The love and outpouring of support is second to none. I am very proud to be a 'Coloradian' and nothing shows the strength of people more then when faced with a battle and coming out on top.

Now, having said all this I am going to tell you that after the Springer Fire here in Lake George, and living in a packed up house ready for the call to Evacuate we were ready to leave Colorado behind for a while to find some fresher air that was not smoke infused. So we sat down and planned a trip to South Dakota. Four nights and 3 full days of fun adventures sounded like the exact distraction we craved for. I admit while we where gone there were times I felt guilty to have left Colorado and my friends, especially when Woodland Park was evacuated. Ron had the week off but stayed home to take care of our home and sweet Apple, Tasha, Bella and Max. Lake George was not in any danger from the Waldo Canyon Fire but the air quality was still not the best so overall I was happy we were gone and my parents were able to breath better in a lower altitude and smoke free air.

We left early Monday Morning at 4:20 am and arrived in Custer, SD around 1 pm. This drive we stopped in Fort Collins for a yummy Breakfast at the Egg and I and it was sad watching the High Park Fire on our drive out of Colorado. Can you believe there were 10 fires burning in Colorado when we left? one person poignantly said that Colorado was burning up.
We stayed at the Bavarian In in Custer, SD and it was lovely. It offered two pools, one indoor and one outdoor, a Tennis Court and a hiking/running trail loop. There was a German Restaurant on the premisses which we tried out on our first night there. Now that first afternoon we played Tennis, swam in the pool and ran on the trail ... it was a needed burn off on energy after 9 hours in the car. The dinner at night was not up to our expectations as the food was the typical 'German' fare you find in the US but that has little to do with true German cooking. HOWEVER the German Beer (in a bottle) and the German Wine were excellent ;)
Day 1 of our SD adventures included us sleeping in a bit and then heading out to tour Crazy Horse Memorial and Mount Rushmore. The afternoon was spend at the Pool and then we headed out for a Chuck Wagon Supper at the Circle B Ranch in Hill City. The boys had a most wonderful time riding Ponies, Shooting 'real' guns, hunting down the Biscuit Thief, running through Sprinklers, having their Caricature Picture drawn and listening to good old Cowboy Music.

Now my favorite part of this trip came on Day 2. Custer State Park! We spend the whole day in the Park and it is truly  a beautiful place. We saw the 1300 + Buffalo Herd and had to drive right through them. There were so many Calfs you could not start counting. We saw and petted a Donkey Herd, rowed a boat across Sylvian Lake. We had a yummy lunch at the Lake Lodge and drove the beautiful Needle's Highway. There was a lot of rock climbing for the boys as well and some wading in cool creeks. I wish we had packed swim suits as there was a beautiful beach for swimming as well. on my checklist for our next trip there :) The only sad part for me was going back home and finding out that the camera had no pictures of our trip to Custer State Park. I am not sure what happened as all the other from the previous days and the days after pictures were there when I uploaded them after returning home.
Back to the Inn we unfortunately had a run in with some very rude and drunken Bikers who thought they could camp out in front of our room (we had a downstairs room with a deck that faced the Pool). They took our chairs and when I complained they became extremely obnoxious. Knowing my German heritage you can imagine that I was ready for a face off and of course would not back down. The thing escalated where the Boss of the Inn  came and yelled at them and send them away while I finished filling a report against them with a very nice Police Deputy. I 'might' have let the whole thing slide BUT not when bad language and low class manner was used in front of my baby boys and my parents. If you think I am a Mommy Bear then think twice when I am in protective mode for my PARENTS and BABIES! I am happy to say we did not see them again and when we came back from Dinner they had cleared out and all the bikes were gone! WIN once again for this Mommy :)

Day 3 started with a trip to Bear Country USA, followed with a visit to the Cosmos Mystery Area and then a drive to Wall, SD for lunch. What a fun little town and while some write ups on Yelp and Foursquare called it kitschy we loved it :)
The Day ended with us returning to Mount Rushmore to see the Presentation and lighting of the Mountain and some Dinner. It was gorgeous! the icing of it all was us seeing a Mountain Goat Family with three kids right next to the road. We got out and were able to watch them only four feet away with the supervision of a Park Ranger who stopped at the same time to look at them as well.

Day 4 was us heading back home and as much fun as our vacation was we were happy to pull into our driveway and sleep in our own beds again. The drive to and from SD took a bit longer then the 8 hours mapquest had mapped out due to the closure of HWY 24 since the fire broke out.
It has been over a week now with 24 being closed and it a huge change to our normal lives. It took Ron 2 1/2 hours to get to the Airport and of course all our shopping in C-Springs has come to a halt. We did miss all the closings in Woodland Park due to being gone and the evacuation was lifted last night so I am hoping to get some groceries there tomorrow. As I am typing right now I heard that HWY 24 has opened up again as of 1 pm today. So I think we will check it out tomorrow.

Connor and Alexander were absolutely thrilled about seeing Mount Rushmore as this had been on their wish list for over a year now. It was also a very educational trip so I felt good about them learning some history while having fun. I decided that we will keep school going when we are home but adding some fun features to this summer as in keeping up the Country Reports. They each will pick a country to learn about each week and at the end of the week each of my dumplings has to pick a food item that they will shop for and then prepare. This week Alexander picked Sweden and Connor picked France. I can't wait to see what we will be eating by Friday/Saturday :)

Hoping your summer is going well and you are all able to stay cool! The heats seems to be the challenge all over the US ...










































Hugs,

R A C A

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