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

Friday, September 3, 2010

Assessments and the usual :)

Today my two dumplings had a reading assessment done for the beginning of this year and it will be repeated in the middle and end of the school year to follow the progress they made.

Well, all I can say it was very confusing to me. Maybe because I grew up in a very different school system but the whole phonics program is throwing me and I guess my boys for a loop.
One of the tests given, was them looking at words and needing to sound them out letter by letter. Both my boys independently reacted the same way. When shown the word 'cat' they read 'cat' the teacher then said 'no, you need to sound out each letter separately'. So here I am behind a divider listening and thinking 'why do they need to sound it out if they know the word?'. Then the word 'toy' was sounded out to Alexander and he was suppose to make a sound for each letter. Instead I heard him tell her 'toy is spelled t o y' but to the frustration of this test none of those answers were correct because my boys did not sound out any word shown to them. They did however both do wonderful at making sentences when given just one word. Connor as a matter of fact was going on and on making a whole story so she had to keep stopping him.
Are you as confused at this as I am? I know in order to get this at mid year we better back track and sound out each letter.....
I do have to say however that even thought my boys handwriting is beautiful in my opinion, the reading and writing part is their least favorite of all the school subjects. They love math and science (oh, the cliche's when it comes to boys) and they love anything that has to do with art. Painting, coloring, sculptures, music, dancing ... you name it and they love it. We are even making great progress in Geography and History. So if we can get a hold on phonics we should have smooth sailings - haha

Other then this we had a very busy day running errands and both Connor and Alexander were in great spirits all day so maybe the sleep aid did the trick or the Infusions yesterday made a fast impact again. Connor does still complain about pain in his legs so I definitely need to talk to his PT and see if we can scale back a bit on his therapy.

I also had forgotten about the long holiday weekend and the traffic in little Woodland Park today was very interesting. I think I counted about 30 travel trailers heading west through town with us :) and it was fun to see how busy our new Brewery 'Bierwerks' in town was. It looked like all the outdoor tables were occupied when we drove by :)

Wishing all of you a fun and relaxing weekend. I am looking forward to Ron coming home tomorrow, followed by Beate and Rainer on Sunday.

Now I am almost ready to head to bed along with my two babies. I can tell you I will miss the nights when they think they are to old to sleep in our bed when Ron is gone. How I love to have two warm little bodies snoring next to me.

Hugs,

R A C A




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