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, May 22, 2012

Country Reports and May Fest 2012

Before I skip back and talk about the last week I want to tell you that my dumplings slept a total of 13 1/2 hours last night. can we say they were
a bit exhausted from our AK trip? - haha

Now I want tell you about some events that went on at Gateway Elementary/ Cottage School last week to finish up the School year.

First the boys class went on a Field Trip to the Wildlife Experience in Denver on Tuesday. It was a fun outing and they loved the exhibits and the 3D Shark IMAX movie. I definitely want to go back and walk through it at a slower pace. When you go with a big group it seems the kids ae more focused on how fast you can move through a building then actually look at some of the lessons - haha

On Wednesday all of the Cottage and Online Students presented their wonderful Country Reports. I was so impressed and all the work the kids put in and how I loved learning little tibits about other Countries. I admit i had no clue that Okinawa, Japan was the Japanese version of our Hawaii where the population loves to travel to for their vacations.
The came one of my favorite parts, the sampling of all the foods from around the world. The list of Countries and food selection was wonderful. I truly was in food heaven and I can tell you I ate only one German dish and it was the one that came from another German Report and Family ... very yummy. The boys brought German Pretzels, Russian Bred Cookies and a selection of German Sweets and I was happy to see they were all gone.
The whole event ran about one hour past the official school bell ending and it was really a fun time visiting and talking to other parents and watch all the kids talk and visit with each other.
Then we had one day 'off' on Thursday and of course it was anything but an off day for us as we had a lot of school work to catch up with that we had been neglecting this past week. So we pushed in at did two days worth of school. It was not easy and the focus was not always there after all the excitement from the previous two days but we got it done :)
So we headed into Friday and the schools May Fest with a lot of excitements and what a great and inspiring day it was!
The school had each class room make a banner and then walk out in the fashion of the Olympics Opening Ceremony. Then there was this amazingly talented little boy that was singing the National Anthem. Such a clear voice that had everyone mesmerized. The part that really touched my heart was the time when Mrs. Struble asked the kids to find a Buddy from the older kids at Cottage who would help them around all the Field Events and Games that were set up around the school. Grace, a very sweet girl which Connor and Alexander love and Adore chose to take on the 'twin's and stay with them for the next three hours. Never have I seen a more composed and organized little girl. I shadowed them around the school but tried to stay out of the way as much as possible as I figured I would step in if the boys became to much to handle for Grace but surprisingly some of her calmness transferred over and they were one of the few groups that finished and completed each and every event. The reward was some Ice Cream for the whole class room :)
After some snacks we all lined up again to head to the High School Auditorium to watch the Talent Show that was prepared by some Elementary Kids as well as a final performance of all the Staff and Teachers.
All I can say was that I was so impressed at the Talent we have at Gateway! There was singing, dancing - Hip Hop, Irish and Ballet. There were Magicians and Poem readings as well as two Piano plays. Then came the Final and all the kids were on their feet when the Staff and teachers performed a hip Hop routine to the song Dynamite. Perfection!!! What great personalities this school has. it made me to happy and proud to be a part of this school system :)
Now my only job to do during this summer break is convince the Bailey Family that they need to return next year to Cottage School! I would miss them so much and they made this past school year so much better for me in every way!

I hope all of you with kids had a great ending to the year and that you all get the well deserved break now!

















Hugs,

R A C A

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