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, March 10, 2013

Switch Day .....

If you have kids do you ever hear how they can't wait to grow up? and how easy they think us Parents have it? We hear this A LOT and no matter how often I tell them to enjoy being kids they just don't believe me.....

Well, last week my husband decided that we should have a Sunday where we switch roles. They boys will be the Parents and we will be the kids :)

Today was the day and it actually started last night with us having to move to the boys rooms and the boys taking over our bedroom. 
We were promptly put to bed at 8 pm and that's when the fun started.... we bugged them each a few times about being thirsty and being hungry and that lasted until about 10 pm. Luckily both Ron and I were able to sneak in our iPads so we were each in one of the boys bedrooms watching Netflix ;)
I also sneaked up twice to get snacks and funnily they never caught me as they were both busy laying in our bed watching TV.

I do have to give them credit that they kept coming down frequently to check on us and when they finally went to bed at 1 am they each came down and gave us kisses on the forehead as they thought as asleep already. I am good at faking this one - lol

The ones that were the most confused about this change up were out cats! They usually sleep in our bed and so last night they both decided to sleep with me in Alexander's bed ... a small bed with two stretched out cats made not for a comfortable sleep for me!
At 8:30 am we were woken up and then the whole fun started. We were served Breakfast which entailed Nutella Bred, Oranges and Parsley for me and scrambled eggs with Ham and Mushrooms for Ron. The boys fed the Cats and Dogs, started a fire (under our supervision) and were shocked how much work it took to cook and get everything on the table at the same time plus the clean up afterwards.
Today also included having to stock up the Firewood and strip our bedding to be washed.
While our 'parents' kept very busy I had fun playing with LEGO in Alexander's room while Ron was reading in Connor's room.
We were then served lunch (Sandwiches) at noon and afterwards I was told I had to work out with 'Mom' Connor. He made me run one mile on the Treadmill, followed by some weights and then a 5K on the Stationary Bike. After this I got to play more LEGO until it was time for Coffee and Cake.
By then the boys had some more work to do with cleaning up the kitchen and pick up around the Living room.
Now they are watching a movie while I got to paint on a canvas and now the only job they have ahead of them is dinner and cleanup.
Funny as Connor has been taking this very seriously and has been working hard but Alexander is complaint about it being soooooo much work and him not getting enough playtime. I can't count on how often they begged me to play LEGO with me - lol

As of now we think we might do this once a month! It is a real eyeopener for them that even on an 'off' day like a Sunday there is still work for Parents....
I on the other hand is having a ball just playing all day (and of course supervising the kitchen adventures).















Hugs,

R A C A

2 comments:

  1. That was a great post. I will have to remember this when my girls get older. I bet they do this with their kids someday. That is when you will have the best and easiest job. Grandma, you can just hang out and watch the fun. LOL

    Lori Nicholas

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  2. I love your workout outfit by the way. LOL

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