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

Tuesday, December 13, 2011

Snowboard Fittings, Play's and Denver Weekend!

So our very very busy weekend started bright and early on Friday when the boys and I headed with the Lake George Students to FairPlay for the Ski and Snowbaord fittings. It is truly wonderful of Christie Brinkley Sports to supply the equipments for all the kids! THANK YOU Park County once again for making this possible and we are so looking forward to the experience of having lessons for the boys in Breckenridge, starting January 6th until March 2nd :)
Of course Connor and Alexander were super excited about riding on a school bus for the first time in their lives. You can imagine they had ideas about how much fun it would be ... well, lets just say the excitement lasted for about 10 minutes and then I heard every two minutes for the 45 min drive at how BORED they were. Yes, can you imagine NO music to listen to, NO movies to watch ... oh what a shock for our spoiled little boys ;) I guess they will have to learn to talk to each other for the coming up trips to Breckenridge. Truly amazing how little time it took to see them appreciate the comforts of their Mom and Dad's cars - haha

On Saturday the boys got to say a Poem and sing a song to Nikolaus at their German School. It was fun to watch them and also here how much progress they are making when it comes to speaking in German to their lovely German Teacher.
After school we rushed up the Mountain to get ready for them to perform in their Christmas Play at the Florissant Grange. It was truly fun to watch all the kids and how well they all did. So much time and work went into this and all thanks to the most lovely and patient teacher ... Mrs. Carmilla Duncan. I loved the fact that I got to meet some wonderful fellow Mom's during all the weeks of practice and it was heartwarming to hear from another Mom who has 3 boys that the energy mine are putting out is still considered 'normal' - :) ;)
So, here is what we learned from this experience. The boys did well learning their lines but instead of loving the acting part were more interested in directing. They also got annoyed with Ron and i about practicing once they learned the lines but had not leaned yet when they had to say each line. Standing still and listening to others was not their favorite thing as we found out. This is were the patience factor came in. Ron and I kept enticing them about the countdown of the practice sessions and they became real happy when Ron promised them to light a fire in the fireplace outdoors after the play so they could burn their lines. This I think might have been the highlight for them. I did ask them both how they liked being on stage and having so many people there to watch the play and they both said they loved it. They were not shy at all but they also were not ready to commit to next years performance :)

Sunday morning we left right after breakfast for our get-away to Denver. Alexander still had no clue what was happening that day but he was super excited to see all the traffic once we reached Denver and seeing how many people were dressed in Orange to support the Bronco's. He begged us to drive by the Stadium so he could get a view of it and he was so happy when he saw it in the distance. We arrived at our Hotel only to see lots of Bronco and Bears fan's all over the lobby. He kept showing people the Bears Sweater he had on thanks to Grant! and he was smiling just knowing so many other people who loved football were around him. We checked in and went to our rooms to change and then when we got back to the lobby Ron handed me the two tickets to give to Alexander. I walked up to him and asked him if he was ready to go on his adventure with Papa. He said 'yes' and I told him he would need those two tickets to go. He starred at the tickets but still had no clue. I asked him if he could tell me what was on the tickets. He told me there was a Bronco's and Bears picture on it ... but he still had no clue. I then asked him if he knew where those two teams might be right now and he then looked at me and said 'At the Stadium?' after that it clicked and he squealed. He did not stop laughing and smiling for the rest of the day! Ron told me after the game that Alexander would look at him every 5 minutes and tell him how happy he was and how much he loved him. Alexander also made lot's of friends at the Stadium and even thought he was rooting for the Bears he was still happy to high five some Bronco Fan's as well.

Connor, Oma, Opa and I went on a sight seeing tour and also enjoyed the Christkindels Market in Denver. I love 16th Street and the Market did not disappoint either. We had some yummy German Foods as in a Bratwurst for Connor, Curry Wurst for my Mom and I and a Schnitzel for Papa. Connor finished up with a huge Cinnamon Pretzel that came with a warm Vanilla Sauce. We also had some Beer and Gluehwein and I was happy to know we would be walking all day ;) Right after the Christkindel Market we crossed 16th Street for some Ice Skating and it was truly lovely. We were thrilled that we met Dr. Soep at the Ice Ring who was just finishing up with her family. The day ended with some Hot Chocolate at Starbucks and then a great dinner and a Horse Carriage ride back to the Hotel. Alexander of course was able to talk even more about Football then before and I did not think this was possible! :)

We are home again and we are so grateful to Ms Lee, who looked after our home and three babies while we were gone!
Oh I do have to mention that we even scheduled in a stop a IKEA and that the experience was as always fun. The only thing I have to complain about is the hight limit that is in effect for the Children's Playroom. Can you imagine my face when I was told that Connor was fine but that Alexander could not come in due to being to tall? Well, he did get in after he took of his shoes and made the cut but truly, how ridiculous is this procedure? I think this is very unfair towards children that are tall! For one Connor and Alexander are obviously the same age and why can children that are shorter BUT older join into the fun of watching a movie but not the kids who are growing taller? I do not realize you have to be short to enjoy the movie 'The Lion King'. Knowing me this will be one recommendation I will be sending to IKEA ... the Playroom needs to be set by age and NOT by how tall you are.

Hope you all had a great weekend and now off to a good night sleep so we are rested for another busy week ahead.








Hugs,

R A C A

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