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

Thursday, March 18, 2010

Day 50 / 30 at TCH .... our launch has started :)





Oh were to start today but with the very best news?

We are cleared to leave for home tomorrow! Blood work came back and I don't have exact numbers but CK levels are down even more and the Von Willebrand has gone back to about 350 from 455. Connor and I dropped of a big stack of prescriptions at the Walgreen's that is located right inside the hospital. This was good news for us since we use Walgreen's in WP so the refills will not be a problem :)

A few adjustments were made on his medications, for one we are going from 29.9 mg of Cyclosporine to 40 mg, and we are going from 400 units twice a day of Ergocalciferal to once a day 2000 units.

Therapy went very well and Connor was in great Spirits all around. Ron came in around eleven thirty today with some yummy KFC and I got another treat for dinner in the form of Chipotle thanks to my husband :) We will both stay here for the night and even thought everyone here is warning us about the Snow Storm that is suppose to strike Colorado starting at midnight we are not concerned. Who really thinks that snow would stand between us and finally getting home after 51 days? My husband will just show once again his driving skills from being raised no place other then Alaska.

Another highlight for Connor today was a visit from the 'Make a Wish Foundation' who came bearing gifts in the form of a Star Wars Book, Star Wars Flash Cards and a Flash Light. There even was a gift for Alexander, and after Connor shook the package he guessed it as Star Wars Lego. I guess we find out tomorrow if he was right :) The visit was wonderful and Connor was funny when for every question about what he liked Star Wars came in as an answer. It will be interesting to hear what wish will be granted for him :)

The news from Lake George today were a bit on the funny side for me but not so much for my parents. Tasha it seemed came home with a whole leg of a deer in her mouth. This would have shocked me six months ago but by now I have seen so many animal body parts thanks to our dogs that this would not have been to big a concern. However, since my Mom and Dad are still trying to figure out the girls, they were afraid to approach Tasha but also wanted to get rid of the bones. It seemed it took about one hour for them to finally chase Tasha one way so they could dispose of it. I do admit I am not a fan of our dogs finding the left overs from dead animals and for someone that grew up in a city this is still an adjustment...
My Dad, according to my Mom has also been very busy making a Welcome Home Banner for Connor that they want to hang up over the front door entrance. I am sure you will see the end results as a picture on here soon.

So Thank You all for your continuous support. This journey would have been a lonely one if not for all of you that have helped us and been there for us the whole 51 days. I am sure you all could do with a break from this blog :)

Love to all of You!

Hugs,
R A C A




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