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

Wednesday, August 22, 2012

Therapy Evaluation

Trying to find our rhythm again after this long summer break is not always easy but we are trying :)

This morning Alexander and I went for a run again and then had about one hour left after breakfast to get some Lincoln Interactive School time in before we had to leave the house for Cottage School (Alexander) and Connor's PT Evaluation.

We arrived about 10 minutes early at school (no surprise for my friends who know we are always early :). I was lucky to be able to meet with the Nurse and Principal to hand in my Letter to the School in regards to Connor's newest health challenges.
It was good to hear that both supported a 504, however, since Connor is not a full time Student at Gateway and does not receive Grades for the extra classes he takes there as in Music, PE and Art, they were not sure how it could be implemented. Now I did tell them I was more worried about his attendance record then anything else as I am confident he will keep up academically. That's why we love Lincoln Interactive so much!
Today was a great example for this as the Therapy Center did not give me any leeway in regards to the Evaluation which they told me could only be done today at 1 pm. So sadly for Connor he ended up missing his second day back to school.
The Evaluation, however, went very well. It was of course very exhausting for Connor but it gave them there a very good picture of all the things that need to be addressed. Connor got a new script for Braces and to see an Orthopedic Doctor. Lucky for us we love the ones TCH has ;)
We also hit the jackpot when the Evaluation was done and I stared asking the Therapist about his thoughts of Water Therapy. He was very supportive of it and told us he would check the schedule.
This is when I got nervous again as I used to always get the early morning slots before. I did tell him I needed Tuesdays and Wednesdays off limits due to Cottage School and that I would highly prefer an afternoon appointment.
Well, he said he would be unavailable then as he is only available on Wednesdays BUT that he will check other schedules.
The great news is Connor got a slot for Thursdays at 1:45 pm!!!!! This is a huge win for us as I will be able to keep school at home on our normal schedule as well. Thank goodness for this gift!

Connor fell asleep as soon as we got in the car and his muscles have been hurting him since the Evaluation as he had to try and make many movements that have been hard on him. He was also sad to hear that in order for him to keep riding his bike he should go back on training wheels. This was probably a great sentence for Connor as he is a fighter and does NOT want training wheels ever again ... talk about a motivational kick to work hard in Connor's language- haha

We made it back to WP with 15 minutes to spear before Alexander was done with school. Perfect timing.

Thank You for the beautiful txt messages today from our beloved Jaja and Alia.
















Hugs,

R A C A

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