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

Saturday, June 8, 2013

Running as a form of Therapy :)

So while I might never call myself a runner I have fallen in love with running 5K's and going on little 1 mile runs on our Mountain, hike with the boys in the Fossil Beds and get myself convinced to go on a 5 mile run this past week :)

Now I still consider most of my adventures a mix of running and hiking and I am fine with this. The biggest benefit is by far the good it all does for my mind.

This year has been very very rough for my family in Germany. So far I mentioned my beloved Sisters Heart Attack in February, followed just three days later by my beautiful Sister In Law's tragic health incident that put her in the ICU and in a Coma. She was just moved a couple of days ago to another Clinic that specializes in Neurology. So she has been in a Coma with only few episodes of opening her eyes since February and we are now well into June....
A couple of weeks ago my Brother In Law was admitted to the Hospital with Water in his lungs. He is still in the Hospital and we are all on pins and needles about his diagnosis....
Last week my Dad ended up in the ICU due to internal bleeding and him needing a Blood Transfusion. He is still in the ICU as the loss of blood damaged his heart and his Heart Valve is now damaged beyond repair as are two of his main artery's.
He will receive surgery on Tuesday as long as he is stable enough. My wish is to be over there now but the logistics are a nightmare. Summer travel for Airline Employees is a huge no no. Oversold Flights are never a good setup for getting on a flight when you are a Standby and on the bottom of the totem pole.

So running is truly a form of therapy as in clearing my mind and worries. As is my latest fun in Yoga. Trying to calm down my mind is a huge challenge and still makes me laugh more often then not ;)

I am so grateful right now that all is calm and well right now here in our immediate home! If we had any emergency here I might feel like going for a run and keep running - lol .... Of course there is also the better part of me and the fighter in me which will always be stronger then the flight instinct so I am taking a deep breath and know no matter what the world goes on and so will we ......

Connor is in need for another Blood Draw but has been doing really really well. He got his Methrotrexate Shot last night and while it is the reason that he so dislikes Fridays he has been really good about it.

Oh and may I also mention summer in Colorado ROCKS! We have the most wonderful temps and sunny blue skies. We even had a couple rain/thunder storm showers the last few days which this dry area greatly appreciates.

Hugs,
R A C A

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