Our Journey thru JDM and Life!: Lingering Cold but progress with Connor's Leg.

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)-

Tuesday, February 1, 2011

Lingering Cold but progress with Connor's Leg.

I am not sure how long a cold should last but we are still stuck with stuffy noses and some coughing. I remember a long time ago when I was little and had a cold and my Mom took me to the Doctor, he told her that he can cure the cold in 2 weeks by giving her medicine for me, or she could go home and let it run it's course and it would take 14 days ... :)

The good news is that Connor seems to be moving better again. He is not dragging his left leg as much and trying to actually pick up his foot. We are scheduled right now to have his Carbon Fiber Braces fitted on February 15th, right after he finishes his infusions.

Connor also just had his Methrotrexate Shot about an hour ago and I can happily say that the shot into his bum is working well for the last two weeks :) Of course there is a huge benefit this past two weeks because Ron has been home each Tuesday and he is magic when it comes to distracting Connor. He never even knows when the shot is coming and he does not complain anymore about me poking his bones :)

Today has been a Snow Day for the Woodland Park School District but not due to the Blizzard Snow we had been forecasted, no since we only got about 2 inches instead of the 12 to 18 BUT because it was to cold. We measured at -20'F this morning and this put our trip to Breckenridge on hold as well because we figured to walk around and look at the Ice Sculptures could wait until tomorrow when it is suppose to be a bit warmer :)

Here is another little conversation I had with Alexander this morning and I so wish I knew where he comes up with this kind of thinking unless it really is the genetic makeup from boys?

So Alexander was getting ready to watch his Writing Video online before taking his Writing Lesson. He made a face when I turned it one and said:

Alexander: "I do not like watching this Video"

Me: "Why not? Oh, I know it is because you don't like writing so much, but honey it will get better the more you practice"

Alexander: "NO MOM! That's not it at all. I do not like her voice or how she looks so therefor I don't want to listen to her lessons anymore"

Me: ....speechless.... once again.

Really? How does a six year old make a call about looks already?

Happy Snow or Cold Day!

Hugs,

R A C A