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

Tuesday, October 2, 2012

Travels Home and the last Landshark Race :)

See here is a definition on what some rate a successful travel experience and others might classify as disastrous :)

I am going with successful:
Yesterday morning the boys and I happily boarded our flight to take us home. We settled into a row of seats in the back of the plane and waited for boarding to finish.
The PA came on with the pleasant voice of the Captain, telling us that the Mechanics are looking over a problem and that he has not heard back from them yet and if he does not hear from them in the next 15 minutes he will contact them.
Connor became thirsty and was happy to receive a beverage from the very nice Flight Attendant we had on board.
Fifteen minutes went by and we were informed that the nose wheel had to be changed and that the plane will be jacked up by the landing gear and that we will receive a new wheel. 
The boys and I did not miss a beat and we pulled out the school books to work on some school papers the boys would have otherwise had to do at home.
All went well for a while until Alexander was getting irritated at the buttons on his shirt and kept messing with them. After telling him several times to stop and him getting mad and frustrated I decided to have a conversation with him in the lavatory. This was actually not as bad as it sounds as the lavatory was still as clean as it can be considering we had not left the gate yet and no other passengers have been to the back of the plane yet.
Yes, I did get some not so happy looks from passengers around us, not sure if they were not happy about Alexander and my disagreements or if they were not happy about the delay? who knows....
I attempted to actually pull of the buttons in the lavatory with no success and by then Alexander was crying as he did not want the buttons pulled off but also did not want to wear them either!!! Goodness sometimes his OCD and Button issue drives me insane!
We settled down after finally agreeing he had to wear the shirt but would not have to button the shirt (Polo Shirt so just two buttons).
We got back to the seats and were able to finish most of the school work before we were released from the gate 1 1/2 hours after departure.
Our arrival time a home was about 1 pm with enough time to start some laundry and take a little nap.
Then it was off to the final Landshark Race for the Fall Season. How Alexander managed to run is still surprising to me. Both boys have been missing sleep, a regular meal and any form of rest for about four days, but then my highly energetic boy ran his race in 11 min and 32 seconds. Over a minute behind his best time but he made it in!
The Reward was a beautiful Medal and a fun party for the whole Gateway Running Team at the local Pizza Hut. What an amazing team they made and what a great Family we all became. The boys love and look up to their Coach and we look forward to the Spring Season. This time Alexander will join the Track Team and hopes to run the 100 meters (thrills me as he will be following into my footsteps). This was one event I ruled in as a child :)
Oh, and while we hardly ever eat at Pizza Hut, those Cinnamon Sticks are amazing!!!! ;)

This month we are taking a break from Cottage School! While I will miss the companionship and Therapy from my beloved Mrs. Struble, Pippi and Alia, I know we have to take this break for several reasons and it should pay off.
Today the boys got to sleep in until 8:30 am and we started school about 9:30 am. We finished all the work we had set out to do by noon and then we had a lot of fun baking Brownies and Celebrating Alexanders Race. The boys reenacted it with a Ceremony and Cake Party. A fun and happy day at home!!! Just as I like it!!!

















Hugs,

R A C A

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