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, January 23, 2014

Family

When I read about life (and how I love to read!) then I realize more and more what a win in the lottery it seems to be if you have a truly amazing family all around. It really seems rare in the big picture, but I am not sure if it is…..

Out trip to Germany for my Mom's 80th Birthday Party was truly wonderful! The flights all went off without a hitch (not always an easy feat when traveling Standby) and the crews we met where truly some of the best at AA. Attentive, kind and FUNNY. The boys were adored and my heart was so proud once again.
In Germany my Sister Elke had pulled of an amazing and fun Party. There was food to feed about 100 people and the Party itself was about 60 people strong. My Nephew Lukas had prepared a bar that served yummy Non and Alcoholic Drinks all night long (until 4am).
The best part of it all however was being able to visit with Cousins, Aunts, Uncles, Neighbors and Friends. 60 People that mean and meant so much to me growing up and are still a force in my life now. It hit me at one point that this is truly the greatest legacy we are giving our boys. A network of people that show and teach them that kindness, compassion and acceptance are still common and should be something that exists everywhere.
A patchwork of people that come from all different backgrounds, political believes and religion.

Another observation I made for myself is that people tend to be kind and polite towards each other in life if they are face to face. So I am wondering if access to a keypad and touch screen really changes how we interact. There are the moments we feel the need to critique each others political opinions, religions that are present or absent, we brag about our kids and how we all have that perfect family, kids, spouses, life. People will call each other names so easily but I wonder if they had to stand in front of a crowd and call someone a hateful name would they still do it? I doubt it ;)

I remember how long ago, 1996 to be correct, I entered an elevator in a high-rise in Miami. A man was already in it and I said as usually 'Hello, how are you today?'. His responds was not what I expected as instead of smiling and saying 'Fine, Thank You, how are you?', he instead started crying and told me that the love of his life had just left him. Back then I was in my early twenties and was not truly equipped in giving him counsel in any form. I told him I was sorry.
If he had posted his heartbreak on FB nowadays I bet he would get countless replies from friends and acquaintances within minutes. 

Today I wondered about my integrity as I was upset to find a Van stuck in our driveway this morning. We had an appointment with a company who told us they be out today to replace both our car windshields this morning. Then they show up with a two wheel drive van that had pretty much bare tires as in hardly any thread left on them. I posted it on FB as I just don't understand why any business or person who lives up here and works up here does not own a reliable 4 wheel or front wheel drive vehicle that has good tires. It bothers me because I see it as a safety issue. It shouldn't as it does not impact my life but I do not want people hurt or stuck somewhere in the Mountains when it is cold and often no cell phone reception is available. In our case we had a clean driveway and Ron was able to pull them up.
 So when they were done I told them that I worry about them driving this van. Both of them were young men, much younger then me for sure, and I was actuality surprised to see them ask me for driving advice (yes they looked serious!) So here I was telling them about how important it is to downshift on a downhill pass or slope, and how they would have made it up the driveway if they had kept up the speed in their van. I know having a good car is an expense and investment, but I believe it is an important factor for us here in the Rocky Mountains.
I admit I did not expect for them to listen to my advice as I find men especially are sensitive when it comes to cars and driving. I love cars and I love to drive.

So I guess when I reaxamine what I say to people and what I post online then I am truly feel I am honest. I look at what I post, may it how I feel about things, how I stand politically or in my believe and I know for a fact I say the same words to people just the way I type them. No guessing for anyone where I stand :)

I think that is a good thing. So back to having a great Family. I think it is possible for most if one agrees to disagree. So does the PERFECT Family exist? NO, do great Families show respect towards each other? YES

Hugs,

R A C A



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