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

Wednesday, June 30, 2010

A Family of Four :)


A Wonderful Day in every way because Ron is home for two days and we enjoy having all four of us together. All three of my men went and got haircuts today and I have to say I was shocked when Connor asked to have a different cut then his brother this time around and actually asked to have it all shaved off. Now we let him get his way 'almost', we compromised with him having at least a little bit of hair left on his head :) At first their looks changed from identical twins due to Connor's JDM and now it is changing with them hitting and Independence streak from each other. They are brothers right now but you could not see the twin factor at this time :)

After the haircut and some shopping (Ron got some sleeping Cots so that in the near future there might be a sleepover in the Teepee for the boys and Tasha & Apple - NOT me ;-) we went to the Chicken Man Place to eat and it was a fun place and the food was good as well. The only down side in our boys eyes was the fact that the Chicken man himself was not present :) They did ask me if he loves eating Chicken here and I told them that I hope not since the idea would be a little bit to cannibalistic - haha.

I also have a confession to make that I broke a rule or statement I have made since I became a Mom to our boys. As you know I love to read and I always said I want our boys to read certain books before they get to watch the movie. One of them is the 'Lord of the Rings' and the other was 'Harry Potter'. Well ....... I broke down last night and choose our movie for the night as 'Harry Potter'. There are really three reasons why I changed my mind and one was the fact that Connor and Alexander have been asking to watch it for many months, ever since Connor got to watch about 15 minutes of it on his Ambulance Ride to the Airport in Chicago and since I started reading to them the first book, the second reason came when I decided I was tired of the selection we had and wanted to watch at least one kids movie we had at home that might keep my interest :) and the third but most important at all .... one thing I learned for sure since Connor got JDM is that we never know what will happen in the future and if they like to watch it now then why stop them? there will me more books out for them to read and I am sure they will not stop to develop a love for reading just because they did not read Harry Potter. So why hold of for a few years when they can love and enjoy the story now? We are also reading the book so in a way it was a compromise - haha

Now what I just wrote will explain why this whole day revolved around Harry Potter (Alexander), Ron Weasley (Connor) and a couple of Dragon's (Apple and Tasha). Ron said it was refreshing to hear some other characters running through the house and the playground that did not sound like Star Wars :)

Hope Your Day went as well as ours!

Hugs,

R A C A

P.S. The beds are set up in our Teepee as well so if one of you wants to come over for a sleepover we have 4 extra beds now :):):)


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