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, April 14, 2010

Day 27 at Home .... All about Honesty :)

It is already Thursday and I am really starting to slack of on writing in my blog.

Maybe we are entering the 'Groundhog Day' movie area. It feels like each week is falling into a rhythm of repetition. Connor is still getting Therapy, PT, OT and this week he got his first In Home Care Speech. So maybe we are not quiet in a repetition but getting there.
When it comes to Connor moving he is truly making improvements. The one therapy that did not sound as promising was Speech. To me he sounds so much better but according to his Therapist he has quiet some work ahead of him. This must be the obstacle about being the parent when to yourself your kids of course are perfect. I am still, after five years worrying a bit however if I am the handicap when it comes to their speech due to English being my second language and knowing I don't pronounce everything right either ....

Usually you all have to wait for Sundays when I throw out what has been on my mind :) but this week you get a treat on a Thursday - ha ha :)
When I first started flying with AA in 1996 I was based in Miami and shared a Studio Apartment on South Beach with my class mate Stacey. I found myself one day on my way to work faced with something that rings a bell for me know, 14 years later. I had entered an elevator that was occupied by a young man. I asked when I got in 'How are you?' and was taken back when instead of him telling me 'Fine, Thank you, How are you?' he started to cry and said he was feeling badly because his partner had just broken up with him and that he just was heartbroken. I have to admit that I was not sure how to respond so just told him how sorry I was and that I hope things will work out. I felt strange because I was still fairly new to the country and knowing that 'How are you' is what everyone says, you also always got the response 'I am fine'. Never before had someone taken it literally!

Now for the first time I am confronted, Thanks to our journey with JDM, how washed out it sounds when people out of habit say they are fine. A lot of friends we meet can honestly say to us now that they are not fine and that life is not all one happy day after another BUT they can't say it to friends or people around them that are not touched by some tragic event because for one they don't want to face the truth that you might not be doing well and second because it makes people uncomfortable, just like I was 14 years ago in an elevator faced with a strangers heartbreak.

So from what I have experienced recently I have to say looking back I prefer the honesty I got when faced with my question 14 years ago. I think I much prefer to hear the truth from someone then the customary 'I am Fine'. Granted in the big picture we might all be 'fine' since there is always someone worse of then us but why can I not love my life but still have an off day???

From now on I think we should only ask 'How are You' if we are prepared to listen to the answer and if we rather not then a friendly 'Hello' will do just as well :):):)

Hope your week is going well!

Hugs,

R A C A

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