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

Saturday, February 11, 2012

Snowboarding #6 :)

I can hardly believe we are now 6 weeks into the 8 week Snowboarding Program. Only two more weeks left and I have to say the boys are making huge progress :)

Their Instructor told their group of five that he thinks they will be ready for the Blue Runs when they are finished. He also has them super excited about his promise that they will go to the jumps come week eight. Now I am not so sure how ready they all are to do jumps but I am guessing that the Instructor wants to show them all what might be possible in their future. If I heard it right he just passed his test in Winter Park to be a Professional Snowboarder and the boys keep raving at how amazing he is. Of course they are also hoping to see Shaun White who is suppose to practice in Breckenridge on a regular schedule.

The biggest improvement came with their certification to use a lift. I was so proud to see them get on the lift and sometimes even all by themselves since the Instructor can only sit with one child at a time. The boys are so thrilled about going on the lift now since this means a lot more territory to cover coming down Peak 8 in Breckenridge :)

Most surprisingly of all to me is the fact that of our two dumplings, Connor is the one that has very good control on his board. Alexander is still fearless but his movements can be all over the place so it is not uncommon to see him skate or 'shred' as they call it into posts, netting's and on his last run down the mountain into a ditch.
This was the factor why the kids were delayed coming in for lunch. I was told the Instructor went down first with the kids following him. Alexander told me it was very windy on top so he skated right into a ditch and was unable to get out. Everyone but Connor was already on their way down so Connor skated over to Alexander and tried to pull him out but was unable to. Connor said he started to cry and then saw one of the Mountain Patrols on a Snow machine so he stood up and started waving his hands. The Patrol, which my boys say was the Police, came over and stopped to pull Alexander out. Now the story goes from the Ditch being 1 foot deep to almost 4 feet deep :)

So only two more week to go and then we are hoping for the four of us to go to Monarch and see how it all plays out.






No comments:

Post a Comment