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

Friday, January 27, 2012

Snowboarding Lesson #4

Can you believe we are already at half time with the boys Snowboarding lessons for this year? Only four more sessions left but I am happy to say they are making great progress.

Today it was a snowy day in Breckenridge with about 8 inches of fresh new Powder. It must have been the reason why the Slopes and Lodge were packed with people. We learned that new powder gets almost everyone out on the slopes and we learned this to be true :)

One thing that had the boys a bit slow down in the last few sessions was the fact that they had a different Instructor each week. The initial one, D-Rad was suppose to return again today but he went out yesterday to snowboard and fell and broke his shoulder. So today the boys were introduced to a guy named Sparrow who is originally from Hawaii. He has been Snowboarding since age 6 for 17 years and even met Shaun White two days ago and Snow Boarded with him. The boys LOVE him. He is pretty cool but also has a great grip on how to teach boys to snowboard. They were just 15 min short of getting their first lesson on the Ski Lift, so next week they will start out with heading to the lifts and to some new slopes to try out.

Ron and I spend most of the time in the Lodge but there are still some great pictures and videos we got of the boys. I loved sitting back and people watch and at the end we even met a couple that came here to ski from Sidney Australia. He should be a fancy camera he uses when he skies and thought it was funny when I told him in my case all his camera would see was a tree that comes closer and closer. He thought I was joking ... if he only knew ;)

One thing I was asked from another JM Mom after I had posted about our first lesson was that she was surprised that Connor got clearance from the Doctors to Snowboard. Goodness, I did not have the heart to tell her that this thought to clear it with the Doctors never even had crossed my mind. So off I went to send a quick e-mail to Denver and Chicago to tell them what we did and to get some input. It was mixed but very honest news and once again I am so very grateful to have such wonderful doctors looking after Connor's care. They said that the fear of course is bone fractures or breaks since Connor's Bones are still weak. His Spine has improved since the first Bone Density Test but his Femur is still -2.7 in the negative.
Now of course they also said that they realize Skiing and Snowboarding is a huge part of Coloradians lives and as in every sport there is the danger in injury so they said since he loves it so much we can proceed as long as Connor understands he has to be careful. Of course being on the bunny hills is also a comfort for them to know. Ironically, the last two times it was Connor who had more endurance and stamina then Alexander. Alexander only did one extra run today but Connor did three more. So the beauty of doing something that is fun brings out something good for Connor.

We also started the tradition on our first trip to Breckenridge to head to the precious Cookie Shop on Main Street after we finished playing in the snow. This store is pure sugar heaven. Warm, huge, fresh baked cookies in so many variations. Just what our bodies need to get some energy back on our drive home, plus as another treat we got to watch the Ice Sculpture Competition today in Breckenridge and Vote for our favorites. Well, we loved them all but of course we had to support Germany and Alaska/USA ;)

This morning on our way to Breck we also had the 'joy' to climb up Hossier Pass in the 14th spot out of over 30 cars following a little two wheel drive car. How people get up and down that pass in two wheel drive during snowy conditions is a wonder. We found out the School bus is actually very fancy as Chains were required and all the driver had to do is push a button inside and the chains automatically go on the tires. Now we drove Ron's car today but it was interesting to learn this fact.

Wishing you all a great weekend. I am looking forward to staying home watching the X-Games in Aspen on TV. After all the boys new hero is no other the Shaun White --- figures!













Hugs,

R A C A

No comments:

Post a Comment