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, November 11, 2010

Christmas Time and this Mom's Mind ....

So here I am entering my favorite Season and Holiday of the Year and I am actually hit by some very conflicting feelings ....

I remember how scared and frightened I was last year during most of the month of December and actually brought to my knees paralyzed by the fear of loosing our oldest son.

We are getting close to the timeline when Connor got sick and I am already feeling this fear again even if it is just the memory of it .....
I had a very hard time this year thinking of God and feeling any comfort in my believe and at one point I had to stop going to Church because instead of feeling God's presents or assurance I was feeling anger. None of the sermons made sense to me and I did not feel them speaking to me in any way or form and actually kept sitting there wondering if anyone really knew what they were talking about.... . Harsh as this might sound but I was actually trying to be nice by staying away from any building that might invite the intention of talking about God.

Now here was the tight robe I walked all year. Initially when all this happened I felt close to God but his voice completely faded away by the end of March. While I was closing myself off and turning my back to God, or to those talking about him, our two precious boys did not get that same memo and therefor kept asking me about God and bringing him into our daily life. We have always prayed before we eat and before bedtime and so there was no logical explanation I could give to my two six year olds why Mommy did not want to pray anymore. So here I would sit and still do everyday, bow my head and pray with our boys. Talk about feeling like a hypocrite!

Now as I mentioned in the start, Christmas to me has always been the most magical time in my life and I always talk about wanting the feeling of Christmas to last all year. I am pulled into this same feeling right now by listening to all my favorite Christmas Songs, like 'Carols of the Bells', 'Do You Hear What I Hear', 'What Child is this', 'Away in a Manger, 'Oh Come All Ye Faithful', 'The Little Drummer Boy', 'O Holy Night' and 'Silent Night'. This is a real conflict for my mind and my heart.
I know so many of you that have been in our life's for many years, and also so many of our new friends we made in our journey have been the exact opposite to me ... you take more comfort in God the more adversity you face. This truly fascinates me!

So here I am not so sure how I will approach Christmas and the Church this year. I know already that I would like to go to Church while we are in Germany just because I always feel like going when I am there. It is after all the Church I grew up in, was baptized in, had my Confirmation and last but not least our precious babies were baptized there as well :)

I also know so many people in my family and many of our friends have prayed for Connor and us and never would I take this away from my boys. Of course after you read this blog you might want to pray even harder for my soul but please don't worry about it at all. It is still the same and I feel stronger in many ways :)

As to myself I am getting strength and comfort from the security of knowing that no matter what is thrown our way my family has faced it and grown stronger from it all. I get hope from the medical professionals around Connor who put their hearts into what they are doing. I believe a Cure for JDM will be found through the dedication of medical teams and the research they are doing.

So, please know that we are still on a journey :)
I care very much about the challenges others go through and I do think of them even if I do not reply on an FB thread that I will pray for you. I might not pray but I still care!

Have a wonderful Christmas Season!

Hugs,

R A C A

1 comment:

  1. It's great to read about your journey! I hope y'all have a fabulous trip to Germany and this Christmas season brings your family joy.

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