Our Journey thru JDM and Life!: Auf Wiedersehen Oma & Opa ....

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)-

Tuesday, January 24, 2012

Auf Wiedersehen Oma & Opa ....

It was time again to send Oma and Opa home to Germany and as with each time we do NOT want to let them go but know we again have to share of course :)

It truly is harder and harder to see them off as we all get older and you know time is only a gift that can run out at any given point.

So we will miss them terribly until they return again this summer!

Yesterday I had a very strange conversation with Connor and Alexander during their bath time when Alexander looked at me and said that he wishes no more babies would be born and no more people would die. I asked him why he would say something like this and he explained to me that he does not want me or anyone else he loves to ever die and that he wishes everything would just stop right now. No more births and no more deaths. Just to freeze everything the way it is now.
I know there are days I fear any shift in nature when it comes to my family and loved friends. Oh to have the absolute power to protect those we love so much!!!

Ron was asked the other day by someone we know if I still had a believe. Now this is not a hard question for me to answer as I do believe, it is however a question in 'how' I believe that has changed tremendously.
I think all cards are out in who may get touched by 'bad luck' or what some might call 'evil'.
I believe no one is safe and I sure don't think God is there looking out for each one of us to keep us all save here on Earth, how else can one explain the pain and suffering some of the most religious people will suffer due to horrendous crimes against them? Also, who in this world actually thinks that God feels it is more important to bring his focus on Tim Tebow and a Football Game all because he bows down to pray all the time? You truly believe a Game is more important then the amount of people that were killed around this world, raped, beheaded or stoned to death during the time the Broncos play? This is were I am on a completely different page at this point in my life! I would feel insulted to think there is a God who looks out over a Game for a couple of hours instead of some of his Children who are truly suffering and in pain.

Well that's some of it in a nutshell :)

Hugs,

R A C A