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, January 18, 2013

New Year Paper Organizations & Tax Season .... :-O

Every year I seem to fall into the same pattern. I know we are spending a lot of time and money on medical matters but I never have a true concept until I go thru all the files to clean out the 'old' year and make room for the 'new' years paper trails. Some of the files and documents are needed for the tax season and as always it can be a very sad and sobering feeling....

This past year we drove about 4600 miles just to cover Medical Trips.
Our Medical Out of Pocket expenses for 2012 were around $8000. Now this number I should be happy about as it is lower then the previous years but I guess it is hard to be happy about any expense that I feel should never be when one is insure and has a great coverage .....

On to better things ...
Connor is up and moving again and had his first Therapy in the year 2013 yesterday. He decided to have his PT in the pool again and loved it.
The cough is still there and still continuously so we had some stares in the Waiting Room but we know it is not contagious and had nothing to do with the flu so we just have to grin and bare it when we are out in public. I truly can not wait for the Appointment with the Pulmonolgist next week! Luckily we will also get to see Dr. Soep and her Nurse Michelle, who squeezed Connor in so they can take a look as well when they heard we will be at TCH :)

Today we had our third Snowboarding Session in Breckenridge and the boys loved it. The day was beautiful weather wise as well. Sunny, clear skies and NO wind. The temps read 37'F on Peak 8 which seemed so warm with the sun reflecting off the snow. I wish I could have had skis and hit those slopes as well :)
Instead I relaxed and read a book :)

I am glad the weekend is almost there. Of course for us Saturdays are also School Days but that's okay :)

I have no current news on the Thomas Family but had one e-mail a couple of days ago that he is in a great deal of pain at this time.

Hugs,

R A C A 


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