Our Journey thru JDM and Life!: A very Merry Christmas Eve!

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)-

Monday, December 24, 2012

A very Merry Christmas Eve!

My Family wishes all of you a Merry Christmas Eve and Christmas Day!

While I love all the magic and wonder that the boys bring to our Christmas and of course cherish the comfort and joy of having a most wonderful extended Family and Friends I also think of all my Family and Friends who had a difficult year due to medical challenges, financial challenges or worst of all the loss of a loved one.

I read a most touching note today that pointed out that the true Christmas is not about Family and Friends and gifts but that of the ultimate sacrifice of God giving us his son. So God knows all about pain and loss and this makes me see Christmas in the way that not every home tonight will be filled with joy or happiness.

I wish I could give the gift of Hope and that there will be better times and of course I also know that this is a gift not taken to or accepted easily. I focus on fear and sadness at times but Christmas has the gift to push those thoughts away from me...

So I do wish Christmas was all year long and this feeling stayed with us. I wish we all could see Christmas through our children eyes as this is the best part of it all!

The boys and I had to cancel our Christmas Eve outings today due to Connors cough getting worse and not giving him a break at all. We had a lovely day in Denver yesterday that included the Science Museum and the Pompeii Exhibit, plus watching people Ice Skate at 16th Street and then having a delicious Coffee and Cake at the Cheese Cake Factory. We finished the day with a touching German Christmas Service at the Messiah Lutheran Church in Denver plus a stop for some shopping and Dinner at IKEA.
So I feel it is okay for Connor to get all the downtime he needs as he did have a wonderful time experiencing the Christmas Season.
The boys have been in bed all day watching Christmas Movies and only getting out of it to decorate Ginger Bred Cookies.... I added some pain to my fingers by putting together the Table and Chairs I bought at IKEA so the boys could have an Art area to work in and leave their paintings out :)

Merry Christmas! Frohe Weihnachten!

R A C A