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

Monday, February 7, 2011

New week, new challenges ....

I am wondering if I should trust the weather forecasts in Colorado. Here we got covered in snow the last two days but if I looked at weather.com it said clear sky's with a possible of 10% chance of snow. I was reading this while we had a very heavy snowfall. My friend Monica had a great responds to my question on FB. She said she would like a job where you can be wrong most of the time and still get payed over and over. Can someone reading this please tell me where I might apply? we could use some extra income and if it came with great Healthcare Benefits, even better!
The forecast for the next two days is very cold (20' to 30' drop) while two Cold Fronts collied over CO. Quiet a bit of snowfall starting tonight and lasting until tomorrow night. However, they also promised that by Saturday we will have temperatures in the 60's!!! wow ....

Do you know that I actually went to a 'Weather' School in Minneapolis, MN in 1993? I used to work for Northwest Airlink (now Mesaba) as a CSR and we did not have a Weather Station so we had to read the temperature and swing the Dew Point Ball for a reading :) We would walk out on the ramp and look at the sky to take a visibility reading and guess at the height of the cloud cover. I can tell you in a place like Rhinelander, WI, with ton's of snowfall each winter, lots of Fog (make that lots of ground Fog!) almost all year, it made for some interesting weather reports. Once we had to turn back a plane calling in for two days in a row because the visibility was so poor, so on day three when I was answering the radio I was yelled at by one of our younger Pilots to please give him a good reading because he was not turning back to MSP and spend one more night in the same outfit / underwear. Gosh, memories of a long ago life!

This morning the boys did very well in school again and the atmosphere between the boys and I was so good that I wanted to freeze it. There is so much uncertainty in our life's right now and ending the day paying bills did not help with the fear that nothing is for certain and me wondering if there will be a time I look back on my life and remember the times when life was good? Will I ever look back and wish I could have changed certain paths? or is our life really laid out already and I worry for nothing? that life is just life and I might not like each path it takes and some roads taken will be painful but I should always look back with no regrets?

I feel like I repeat this over and over but I have to because I don't want to say I did not tell everyone how much I appreciate all the support given and all the little postings I get that bring a smile on my Face.
What keeps me going when I feel like quiting is family and friends that show me love, especially when I do not feel lovable!

Hugs,

R A C A


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2 comments:

  1. SusanFebruary 7, 2011 at 7:01 PM

    I don't know about anyone else, but I think you are loveable all of the time. You are a super strong mom and wife trying to maintain sanity in a world of uncertain challenges.

    I am so glad to hear that the boys are doing well. I love to hear when you post about them outside playing with the girls :) I often wish after one of those posts that we had room for Dominic to run free and play with Dakota. But, we are in the middle of the city and that is not possible.

    Hugs to you all,
    Susan

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  2. ILoveLucyLouFebruary 7, 2011 at 7:14 PM

    See Susan! That's exactly what I mean. You posting something sweet that makes me feel good! I so so so wish we lived closer so our boys could play and run together. It is the one part I love about living in the Mountains because it gives them this kind of freedom. There are times I have questioned living where we are because it takes me 2 1/2 hours to The Children's Hospital ... I guess no matter what there is the good and bad in all. Hugs to you sweet friend!

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