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, September 9, 2012

JM update ....

So I should have mentioned yesterday that on the JM news front Connor is doing really well physically!
As you saw in the pictures he was walking quiet a bit when we visited the Dinosaur Ridge (we took the Shuttle up the Hill but walked back down the hill which was almost 1.5 miles long).
He also has been back outdoors here at home playing in the Playground. This is a huge improvement and I feel that the two Solumedrol Infusions really helped a lot.

Today we had a fun and relaxed day at home! When you home school you feel as if your home suffers a bit as we take our time in the class room serious and I feel as if this is my full-time job (wish it came with a paycheck! - haha). So when I talk about a day OFF at home that means me getting caught up on housework. Today I got the laundry for this past week done, baked a cake and cleaned around the house. I got a wonderful nap and the boys were thrilled to have some unscheduled free time as well. They played outside, which happened to be a gorgeous Colorado Day ... sunny, warm but not hot. They played on the Wii and for my benefit worked on some Educational App on the iPad. They had Facetime with Oma and made some Clay Fossils. We ended the Day with a movie and I am now looking forward to a nice quiet night.

Ron is being treated to an extra Day in Anchorage due to the inbound flight being canceled. So instead of making it home tomorrow he will be back on Tuesday.
Tuesday is also Connor's Appointment with the Surgeon so unfortunately this means I might have to bring Alexander along and he will miss out on Cottage School as well. So we are just a couple of weeks into the school year and I will already be looking at two missed school days there alone.

Oh and below I posted a picture of our beautiful Radishes from our Green House, plus the lovely dinner Connor prepared for the last night. He was upset that i wanted to skip my dinner due to me not feeling to hot with my tooth ache that he went into the kitchen and prepared a Nutella Bred for me. He figured no true German could turn that one down and so of course I ate it :) Made with lots of love and hard to resist :)

Tonight I also want to ask all of you that already Voted for CureJM at Chase to please pass along the word and ask your Family and Friends to vote as well.

https://www.facebook.com/ChaseCommunityGiving?sk=app_162065369655







Hugs,

R A C A


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