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

Sunday, November 13, 2011

My love for Sundays!

I have never appreciated Sundays as much as I have for the last month or so. This past week was way to busy for my taste and I was happy to see it come to an end. I know I said it before and I repeat myself but for a Stay at Home Mom who is Home Schooling I was in my car way to much this week. We were on the go from Monday to Saturday adding way to much milage to my precious car and today I promised I would not even step out of my PJ's and as of 2:30 pm that still holds true ;)

I wish I could list all the things we did this week but it was such a blur that I can hardly recall the beginning of the week and since I completely changed everything to iCloud on my computer and iPad last night I now find myself faced with a Calendar that has been erased. This is almost funny as I my heart used to sink looking at our busy schedule ahead and now I am looking at clear weeks ahead with nothing planned. Not seeing my old schedule should have me upset but instead I find myself laughing because I love the freedom I see even if it is a deception. However, should I miss any event I was suppose to make an appearance at then I am hoping you got to read this blog and you know why I am a no show :)

One thing I do remember about last week was the boy's Sankt Martin's Parade with their German School on Friday night and it was very precious. It was actually a very big turn out and we walked the streets in Old Colorado City between 6 pm and 7 pm with lots of different home made Lanterns and singing four different German Songs. I actually had to laugh then as well, as I pictured what the people in the neighborhood must have been thinking seeing so many Kids and Adults walking through the dark, singing songs in a language they probably did not understand. At one point my mind got the best of me when we stopped and sang a song and the light in the house next to us came on. I was counting down the minutes to see if someone with a gun drawn would jump out and think they got invaded by Germans ... I know I have a sick sense of humor but knowing how gun happy people can be I was a bit anxious at times. However all went safe and sound and it was fun. The four of us ended the night with Dinner out and a late night to bed when we had to face an early morning for another drive down the Mountain for the boys Saturday School.

So I am  hoping all is well with all of you and we are keeping once again some kids in our minds who we care so much about. May the MRI for Grant bring answers tomorrow in a good way! and also sending hugs to little Ren who is facing another surgery for her Adnoids.

Now that my schedule is clear even if it might be only in my mind, my MacBook Pro and iPad ... I might run with it and start with a new slate of focusing on school here at home, shipping some promised boxes and getting this house cleaned. Yes, I will remember to take the boys to school on Tuesday, Wednesday and Saturday and to Theater Practice on Friday but that's it ... hey, wait ... looks like I am booked once again for 4 days out of my 6 day work week ... I better stop while I am ahead and feel the guilt to add more.... Haha!

Hugs!



R A C A


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