Our Journey thru JDM and Life!: Day 16 at Home ... HAPPY BIRTHDAY & EASTER!

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)-

Sunday, April 4, 2010

Day 16 at Home ... HAPPY BIRTHDAY & EASTER!

First off we hope all of you had a wonderful Easter and if you do not celebrate Easter then we hope you had a fun and relaxing weekend :)

We had a most enchanting day today. It was not our traditional Easter of Birthday Party that we were used to from the past but it was very lovely and precious for all of us.

Last night us 'grown-ups' stayed busy decorating the house with balloons and trying to find good hiding spaces for their Birthday Gifts. I tried to stay away from the oven as I remember well what can happen when you use this space and then someone turns on the oven without looking into it first :) So this year one of the places I used was the wash machine since I figured that would be one item we would not use today - ha ha.

We all got up early and as I said before, it was different but wonderful. Both Connor and Alexander stayed busy all day playing with their new PS3 and we been eating ourselves crazy starting out with pancakes, Fresh Strawberries on Biscuit and whipping cream, Pizza and Ice Cream Cake. My Wii Fit will be calling me tomorrow!

How can I ever put into words how everything that has happened in my life falls short to the day our boys were born? Granted we did not meet them until they were six months old and we will never know what time they were born or what the circumstances were surrounding their birth BUT I will always be so ultimately grateful to their Birth-Mom for giving the ultimate gift to us. I am grateful to the Russian Hospital who took care of our boys for the first four months of their life since they were born premature at week 33, weighing in at just 3.2 lbs at birth. Then our gratitude will always be with the Staff at Baby Home # 2 in Khabarovsk, Russia, where we met the most loving and caring women. This Baby Home was filled with love and it is due to those women that we were handed over the most beautiful Baby Boys.

This day five years ago we sat in our two bedroom apartment in Khab, celebrating with our boys their first Birthday Party with another couple that was adopting brothers as well. We had cake and balloons and as a gifts the boys received Russian Flags and Flags from the town of Khab. Our dream still is to go back when the boys will be 10 years of age and be able to really soak in the beauty of the area and the population of Khab.

So, maybe today was not the traditional super busy Birthday Party the boys were used to for the last four years but it was eerily close to the first Birthday Party. Small but happy!!!

Love,

R A C A