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

Sunday, January 12, 2014

Super Powers over the ages :)

Since I have boys the conversation about wanting to be Super Hero's comes up often, as in daily, in our home. So after asking me over and over which Super Power I would like to have I had to sit down and tell the boys that they actually change with age.
I know in my teens my wish was to ace every test and make teachers I hated disappear. No worries, as far as I know my super powers did not work and they are all still alive and breathing, plus I did not ace every test ;)  However there was the one teacher that kept telling me if looks could kill he would have dropped dead.
On to my 20's, that was my naive kind of years when I followed my dream and got a job I loved and believed with all my heart that my magic power was kindness. Kill them all with kindness and if I am sweet and nice they will all like and love me. Well, I left that behind in my 30's when my super power dream was to know every language spoken in this world and to understand very code ever developed. I figured if I had this then I would be set in life. Can you imagine the job possibilities? ;)
Truly looking back all my so wished for powers were truly always focused on how to make my 
Iive easier and no it did not change much in my 40's.
So moving on to motherhood and coming face to face with JM. Now I always figured there were limitations to Super Powers as in not being able to ask to find cures and save life's. After all that game was left for the highest power. To give and take life.
So what other gift could I give to people? By now you realized my mind can be, and most of the time is, the most unexpected. So for my 40's I would like to be a kind of Angel of Death. NO not the one that delivers death but the kind that could look at others and see in there eyes the day they will die and how.
I think this would be a tremendous gift, even thought life insurance companies would hate me!
If I could tell those that would like to know, when and how they will die that would give in my eyes pure freedom. If you know you have 50 more years to go you would know to invest carefully for old age and start taking better care of your body now so you could be an active 90 year old (in my case ;)
Or I could tell you that in two years you will have an deadly accident. Well can you imagine all that you could do to prepare things for your family and then go and do all the things on your to do list but wanted to safe for later? Like travel to Nepal for example.
I would give so much for the peace of mind in knowing if Connor and Alexander had full life's ahead of them or will something like JM cut for example Connors life short. Would I then not parent differently and show them things that we would usually safe for later?....

I admit this thought process came when hearing a story of a family who lost a parent suddenly through an car accident. I heard this and my first thought was if I had to die now I would wish for a slow death as in Cancer. When I was young I would have wished for a fast and painless death but as a parent I feel I need a heads up to prepare things and be able to say my goodbyes.

So my power I want is to take the mystery of death away. We all know it will come at some point and what I woud give to know the when and how. 

Some might find this very weird and strange. I would find comfort in it and think there might be some others as well. Should I ever come to it fear not. I would not volunteer my information unless asked for it - lol

So please tell me what would be your Super Power? And why?

Hugs,

R A C A

1 comment:

  1. My superpower..... I think would be the power to see the best side of people and pull it forward? There are people out there that I bet have the potential to be AMAZING but it is hiding in them. I would love to be able to just suck in my breath a little and pull their best selves forward. (Ohhh, and push people's ugly side into a little box and lock it away!!)

    If I could do that, I would be AMAZING!

    ReplyDelete