Our Journey thru JDM and Life!: A Day at Home, receiving a gift of love and a great Ending :)

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)-

Wednesday, July 28, 2010

A Day at Home, receiving a gift of love and a great Ending :)

This should be a shorter Blog Entry then my usual ramblings :)

Today was a good Day that we got to spend at Home with just one quick trip to the Post Office to get our mail.

There was a small package in the mail from one of my best friends Mom who send a very precious and meaningful gift to Connor and Alexander. You know of the fascination Connor and Alexander have with Star Wars so you can imagine their eyes when we opened the package and there were two gorgeous Necklaces, one with R2D2 and one with C3PO. There was also a Darth Vader Pendant as well. This gift brought once again tears to my eyes because it shows once again it is not the value of money that this gift has but the meaning it has. Those two necklaces used to belong to Brian Scott, a Son and a Brother who as a boy loved Star Wars and then as a young man joined the Army to serve his country. He was killed in Action during Dessert Storm and this family lost so much that day. It is a tremendous honor to us as a family and our boys to be entrusted with those precious Necklaces because there is so much meaning to them and also so many memories connected as well.... So THANK YOU to the lovely Scott Family who has adopted me when I came to the USA 17 years ago. You took care of me then and you are still treating me as family which means so much knowing that it is not always easy to love crazy me :)

We had a wonderful finish to the Day because after being in Santiago, Chile for over 42 hours my husband and Connor and Alexanders Papa came home. He has been so busy flying that we cherish everyday we get to have him with us. This time he will be home for 2 days before leaving for 5 days. This kind of schedule is not necessarily normal since this is a bit of a catch up from the days he had off earlier this month when we went to Steamboat Springs for a break.

Hope your Day went well and please keep Voting for CureJM for us. If I don't say enough how much I appreciate it then I am sorry! I know I have been bothering you all month and I will have to bother you more the coming month since it seems we will be moving on to August as being in the top 20 but not the top 2 spots.

http://www.refresheverything.com/makejmamemory

Thank You!

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R A C A