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

Sunday, January 26, 2014

Schedules ;)

For me it is always a tad of a challenge to stick to a schedule as I seem to have two powers inside of me collide and fight a battle. One is my German DNA that craves order and reliability, which is fought against with the wicked Gypsy DNA that I somehow got and no one knows from where. My need to be free and impulsive, my desire not to plan ahead or worry about tomorrow.

So I am telling you this because yesterday I sorted through papers for our upcoming Social Security Visit and found the handwritten note that was handed to us when we picked up the boys from the Baby Home on March 26, 2005. They were just 9 days away from their 1st Birthday and of course where still catching up developing wise as they were born premature at 3 lb each in the 33rd week.

I smile when looking at that note as it shows me that in Siberia, Russia they were just as serious about schedules as it was in most parts of Germany when I grew up:

7 - 7:30 Wake Up, sit on their pots if they were dry through the night.
8:00.       Breakfast 1. milk porridge and a small amount of cottage cheese or grated cheese omelette 
                                   Or half boiled egg. 
                               2. A piece of bread.
                               3. Milk
8:30 - 9:30 active time (playtime)
9:30 - 11:30/12:00 nap
12:00     Lunch 1. Soup and piece of bred.
                         2. A cutlet with mashed potatos, rice or buckwheat with sauce. Or steamed cabbage.
                         3. Juice/ light green apple
13:00 - 15:00 active time (playtime)
15:00     Snack Kefir or Jogurts, plus small roll of cookies and some fruit.
15:30 - 17:00 Sleep
17:00 - 19:00 play, walk etc
19:00.   Dinner, Milk Portidge or something like second serving of lunch.
19:30 - 20:00 play
20:00.    Sleep

It truly brings back memories of the Baby Home and while we had to adjust the food since the boys had no teeth at that time I was so grateful to that schedule as both our dumplings napped twice a day without complains for up to 2 years. They slept through the night from 8 to 8 without issues and best of all I had boys who had tummies that never seemed to get sick or bothered by food. No throwing up or diahria in those early years ever.
Now the potty part was super funny however as both were not potty trained at 12 months so just thinking of sitting them on a potty made us laugh.

With everything politically going on in Russia right now it is heartbreaking for us here to watch.  We watch the news as a family and we are sad how backwards things seem to be going. Now Puttin was President when we adopted our boys and what a different Russia it was then. No matter what, we will always be grateful to this Country for giving us the ultimate gift of our boys. The women we met in the Baby Home and in tne Courts, Judges and Lawyers, where people with hearts of gold and who had a deep love for the children of Russia.

So THANK YOU Baby Home #2 for giving us this list on how to take care of the treasure you handed us. We all left a piece of our hearts in Khabarovsk, Russia, thanks to you and hoping for calmer years in Rusdia so we can return to visit!



Hugs,

R A C A
             

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