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, February 10, 2013

How we love Weekends!!!

This past week went by way to fast once again but I don't mind as it always gets me closer to my favorite days during the week. Saturday's and Sundays :)

Connor had to have some Blood taken on Thursday, followed by Physical Therapy. Both went very well and he did good on both accounts. My little baby boy is growing up as he does not even ask for numbing cream anymore during his labs and he showed good endurance during his Therapy.
However, as it is there comes a price tag with all the events we dealt with this past week and for Connor the exhaustion point came on Friday about one hour after starting his Snowboarding lesson.
The lessons run for 2 1/2 hours from 9 am to 11:30 am and at 10 am Connor was brought inside the Lodge and I was told he was not feeling well.
It turned out he was just weak and tired and after getting him settled down and playing on the iPad all was well again. Alexander finished up at 11:30 am but told me that he had missed Connor very very much. 
We left and decided to stop at Breckenridge's Main Street for some Cupcakes to shockingly be faced with a store that is no longer in existence!!!!
How can this possibly happen??? I can not believe there are not enough people in and around Breck that eat Cupcakes! sad sad sad day .....

Saturday we decided it was time to NOT leave the house! We had been on the go all week and needed a timeout!
We finished school, cleaned around the house and then baked some Lemon Cupcakes .... if you can't buy any you have to make them yourself ;)

Today was our one and only day during the week when we get to play vegetables and lay around lazily :) Pure Love for Sundays!
We will have to step out tonight however to pick up Ron at the Airport and it just started to finally snow! I am thrilled about the snow! We desperately need the moisture and there already was a small Wildfire last week :(

I am going to finish with some wonderful news: 

I just received an e-mail from Michelle and Connor's labs look GREAT!!! We are now tapering down to 1 ML of the Prednisolone starting tomorrow and we will stay on this for 2 months until his next labs come up. This is truly a gift that made both Connor and I very happy!

Hugs,

R A C A

No comments:

Post a Comment