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, June 25, 2010

.... summer time ...

Everything about today has and is lovely. We all woke up in a good mood and the weather promised to be beautiful sunny with just enough clouds to give us some shade and a slight breeze where you just crave spending time outdoors.
All of this got me motivated to wash all the bedding's throughout the house and then go on a little run and I say 'little' because I am so out of shape it is not funny. I ran to the end of our property and back and I was getting worried about my breathing until I realized that Tasha and Apple were breathing just as hard as I was :) to their defense I have to admit they have been playing and running all morning, thought :)

The boys and I also were able to do some 'Yoga', thanks to the instructions we received at the Therapy Evaluation yesterday. Maybe I am brave enough to add a Video of the three of us one day to show what it looks like when we are all attempting the 'bridge' 10 times for 10 seconds each. I am sure it makes for a funny sight :)

After we all got a little nap time in we spend the afternoon sitting outside on the Back-Deck for Coffee & Cake while listening to the thunder roll in. There were just a couple of lightnings but the view of the clouds moving and the air just slightly cooling of was just heavenly. Everything was so harmonious about today and I wish I could bottle up the feelings. Ron got some work done as well cutting down three tree's so he can widen the driveway to the backyard and after this we sat outside reading books while it rained :) Yes, we sat under the porch :) and what started out with just Ron and I ended up with the four of us 'reading' outdoors in the rain.

What I also cherished today was the recognition that our boys are getting to experience some of the freedom Ron and I had as kids. This morning they both took off playing outdoors in the playground and forest in front of the house and other then me looking outside the kitchen window once in a while they had complete freedom. I have a huge comfort of course due to the dogs being with them and it is liberating to know that they are getting some of the freedom to play unsupervised in a way just like I did when I took of at their age playing at the lake with my friends and only coming home to eat :) I think this art is being lost because there are so many thinks to worry about now and truly if we lived in town or in a city I would never allow them to have this much freedom at their age. Having a drive-up alarm and Video surveillance of course lets us control their freedom but they don't know that :):):). So today it was brought back to my memory why this move to Colorado was so important. We moved out here so our boys can grow up with a sense of freedom and confidence that might have been harder to teach in a City. Of course there is Street Smarts as well and I hope they get that from our travelings :)

Okay, I am back to cooking dinner now and hope that your Friday was as peaceful as ours was :)

Love,

R A C A

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