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

Wednesday, December 21, 2011

Last Day of School and Memories

Today was the boys last day of school for the year 2011, of course they will still have school at home but no more Cottage School or German School.

The Christmas Party was truly lovely and all the kids did wonderful in their plays. Mrs. Struble was missed a lot but I know she would be proud of all the hard work that went into the finall week here at school. I had the pleasure to see many fellow parents step in and help. I wish I could name everyone by name but you who know me know that I am bad when it comes to names, however I can point out those who's names I know and who all were Angels throughout this school year so far: Pippi, Alia, Louise and also the beautiful soul of the Substitude Teacher who was and is a brave soul to take on someone else's Classroom, especially if that someone is Mrs. Struble, who is so loved and adored by all her kids. I most likely received the most meaningful gift today, for me at least. It was an extremely unexpected Gift and it is hard to tell you how much it touched me. One of the boys Classmates, Elizabeth, has been touching my heart all year. She is a most beautiful 7 year old Gil that has been battling a brain tumor now for almost 3 years. She is a tremendous fighter and her disposition is so sweet and inspirational. I so enjoy all conversations I have with Elizabeth's Mom, Alia, and I can tell you she is a much better and stronger woman then I am. She is so full of faith and being around them both always makes me leave feeling better about myself. Anyway, I received a beautiful bag that was hand painted from Elizabeth. It has her and my name on it and if you live close to me I can promise you you will see me out and about using this bag a lot.

 So, all this and reading through the Blog that the Bailey Family has, brought me to remember when we started our journey two years ago. I just retread my own blog for that first month of January 2010 and how I wonder now how I am comparing to the person I was then. Then I still carried a lot of hope which I think I still have now but I was not as disolutioned then which sadly I seem to be more so now. It will be our two year anniversary this Christmas and I know I had a hard time enjoying Christmas last year but this year I am mentally in a better place. Of course Connor is doing so much better now so this might be one reason. I do know the memory of how much fear I felt about us possibly loosing our baby boy will never leave my mind and all this happening during Christmas 2009 will always keep a shadow on my heart but I also know how lucky we were that we did not loose Connor and I am feeling the inclination again to visit a Church. I wanted to take my parents to a German Service in Denver last weekend but unfortunately it did not work out. Now my concern is that I so want to have my step back into a Church be so something touching but I still have the fear that the words in the sermon will not touch me but leave my cold again.

 On a lighter note :) I just went outdoors and we have quiet a winter storm going on. 4 inches in about 2 hours and it is still snowing heavily, so our white Christmas is pretty much guaranteed :)

Hugs, R A C A

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