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

Saturday, June 4, 2011

A get Free Card for Family & Friends :) NOT JDM related ....

Our Day at Home today was very successful as in getting some work around the house done. The boys did an amazing job cleaning up their room and the living room. They earned themselves an Orange Cream Popsicle and some playtime on the iPad. I earned back some Tickets from the boys who in turn each paid 30 Tickets for that precious iPad time. So all in all a great deal for me :)
I got some Laundry done and with the help of Alexander even a Garbage run on the 4Wheeler. My dumplings really are growing up as Alexander went and drove the 4Wheeler back up the hill pulling the Trailer. Before you gasp, 'yes' I was sitting behind him and helped with the steering. He was in complete control of the speed but I had my hand on the brake. I did not have to use the break at all however and he drove very careful and watched after the girls who were running next to us.
After all that I had the joy to work on our Bills and Reconcile Bank Statements. Joy oh Joy :)

This is what reminded me however of a message I wanted to send to our Family and close Friends. So you are getting it in a blog post now but you are getting it :)

If you remember we never had a Birthday party for the boys last year since Connor had just gotten out of the Hospital and we did not feel like planning a Party. Well, the year went on and Ron and I had many discussions how we went of track when it came to a focus on Materialistic things. One of them was gift givings and the fact that Birthday Parties were getting bigger and bigger. For one we both grew up with the classic approach that for your Birthday you should be surrounded by family, have a nice Dinner and enjoy each others company. Now this year we told the boys that we will celebrate their Birthday with their immediate family (Oma, Opa, Papa & Mama). We had coffee and cake, went to the movies and had Dinner. It was nice and relaxing and did not break the bank.
I think his is how I would like to see us as a family approach all the Birthdays and Holidays from now on.
For our friends I am telling you now it would be great to skype on Birthdays and Christmas and maybe have the kids color pictures or arts and crafts they made and possibly mail photos of the memories we made with each other throughout the year. Please do not go through the expense anymore of buying Gifts for either Birthdays or Christmas! Trust me when I tell you all four of us have enough 'toys' and do not need anymore. We get more pleasure out of it if you give money to a cause that matters to you, go to dinner with the money you would spend on us, or even better use the money to pay of a bill or buy something you have a need of.
My fellow twin mom's probably understand that to buy gifts for twins you are out each time over $50, just by spending $25 per child (if you can find something for $25!!!), then add the wrapping and Cards and shipping.....
I admit I am once again being honest that it would help us as well to get away from the amount of money spend for Gifts. We all have families we are buying for already and my question sometimes is when is a day I am not shopping for someone? Please know this is not me trying to be cheap but this is me trying to make a new budget work. I always loved the joy of giving and there will still be the time when I see something that reminds me of someone and I will buy it. My husband is even better at that one as he always finds gifts and trinkets when on the road. This however takes the immediate pressure off on buying something for specific days in the year.

So here is your get Free Card! Do not buy anything for us anymore and also please do not feel left out if we are not having a Party anymore. This releases you from feeling that you might have to invite us! None of this makes the Friendships we have, or our kids have, any less. I do not want my kids to grow up remembering people by what toys they gave ... and truth be told, I want them to remember people by spending time with them!
So your true Gift to us will be your time :)

Thank You!



Love,

R A C A

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