Our Journey thru JDM and Life!: Happy Mothers Day!!!

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)-

Monday, May 10, 2010

Happy Mothers Day!!!

How can I truly explain that this years Mothers Day was hands down the best I ever had? Granted I always thought the 'first' one would be the most memorable one and it still is but this year how could I not look at our boys and be so deeply deeply grateful that we did not loose Connor in January. How can I put in words how much more I cherish each day with my kids and NEVER take another day for granted!

The one part of Mother's Day I could have done without was being bit by a Spider while the boys treated me to a two hour nap :( wicked bite that put me on Antibiotics for a few days plus some potent cream to stop the burning and itching. So from now on we do not sing 'Itsy Bitsy Spider' at our home ... we have free hunting season now - ha ha

Connor is making progress each and every day and it is amazing how ambitious he is and how much he pushes himself. I was told so many times now that it is important for him to go slow and not to stress his muscles but I am faced with a huge obstacle of trying to slow him down. We are still taking the Wheel Chair everywhere but he truly tries to make the best effort to walk as much as he can.

Ron bought the boys a 14 foot Tepee as a surprise and we decided to put it up this last weekend. We told the boys they could play in the forest around the playground as long as Apple and Tasha were always close by. The only limitation we gave Connor was not to climb up on the Playground House that leads to the Slide. Well can you guess where we found him within 15 min of starting our project? I know I am pointing out now how well he listens to me but truly he has no idea how to stop doing the things he so loves and has not been able to do for months now.

Alexander has been a sweetheart as well but it is still a challenge to get him to focus most of the time. He seems to be making more of an effort when we have school. I am now debating to have school throughout the summer since we missed a couple of months when we were in the hospital plus I am aiming to stay away from crowds as it is. I know I repeat myself BUT it is so important to not expose Connor and it is already hard enough to try and keep the immediate family healthy that I can not picture taking the boys to to many public places once school is out.

I did receive a couple e-mails from the Lady that is working on Connor's Make a Wish come true. I think we might be looking at a possible trip for late summer or early fall :):):)

I hope that all of you had a wonderful, peaceful but Fun Mothers Day Weekend! This was the first one we stayed home the entire day and I enjoyed every minute of it.....

Love,

R A C A