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, March 6, 2012

School Reports and the Titanic

Two Blog entries in one day ... I am not sure if I have ever done this since our Hospital stays but here it is.

I am doing something today that at times annoys me and I think we as a society do to much off but I am going to brag about our Dumplings huge success when it comes to their hard work in trying to catch up on the year they lost in their education and schooling. Don't get me wrong when I say this, as I do believe they had a tremendous education in so many ways the year we were in battle mode against JDM but they did miss out on First Grade and there were so many holes that we all agreed they would be better of repeating First Grade.

One of my biggest concerns was their reading and writing skills. They did very well in Math and Science but not in the other. I got a lot of help from my wonderful friend Kim Miller who send me a box of B.o.B Books and Inbetween the Lions DVD's. I truly believe it was the part that got the boys motivated to read. We also dug into our home schooling and put in a lot of hours, 6 days a week. The boys were allowed to get one day a week off which usually was Sunday and spend in PJ's all day playing games and watching movies. I got very protective of our goal and cut back any outside distractions and activities other then the Snowboarding lessons and they kind of fell in the Park County Curriculum ;)

So to get to the end of this story, today I got 6 e-mails, three for Connor and three for Alexander. It was the notice that they Graduated from the Little Lincoln First Grade Curriculum and the Grades were as followed:
Reading - A
Writing -  A
Math -     A
for both each.
I really could have cried as I know how hard they worked for this. Yes it is just First Grade but to us it was this mountain looking ahead of us since we always felt as if we were behind.
So THANK YOU Little Lincoln and Ms Elizabeth Callen for all your help and constructive input.
THANK YOU to Mrs. Sandy Struble who truly is my Angel and has so much love for our boys. I never seen a teacher with more compassion and more wisdom then her. She gave ME hope when I doubted myself. She knows how to push the boys and ask the most of them.
So the boys got the Grades, but I think this was a huge Team effort and I am very happy and proud!

On another note, Connor and Alexander are in a huge fascination about the Titanic. We own about 4 books on this subject and they even checked out books from the school library about the Titanic. So I end up reading to them and remembering being enthralled by this historic event when I was a child and now my boys are as well. What a sad Tragedy it was!
Thank You to Kathleen Burkhardt for this amazing Book about the Titanic the boys got for Christmas!
How many of the 2,227 on the Titanic thought this Ship would sink? only 705 ended up surviving! Today we listened to a song on the way home from school about living life as if you were dying. Connor wanted to know what this means and I asked him if I told him he would die tomorrow what would he do today? and he said "Have lots of fun". Exactly! what I replied to him is that we should try and have fun each day. We still have to work but you can have fun while doing it.



Hugs,

R A C A

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