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 6, 2011

Busy but Fun Week :)





I guess it has been a week since I updates the Blog and I have to say it was a fun week for us as a family :) For one Ron was home for 5 DAYS!!! and we got a lot of things done around the house but also had some fun outings as well.

On Tuesday, Day 2 of our -30'F or so tempts we took a risk and ventured out to Breckenridge. You all know about the Snow Blizzard that paralyzed States between TX and the East Coast. We did not get much snow at all but it was so cold here in the double digits that the schools closed for a couple of days here as well. Now this does not impact us since we home school but our worry was our Pipes freezing again. The great news is that they did NOT, so we are confident now to have figured out what to do to prevent this :)
So after a few days inside we had some cabin Fever and decided to go for a drive to Breckenridge to look at the International Ice Sculpture Competition. The roads were fairly clean, as a matter of fact they were great all the way other then the West Side of Hossier Pass. I truly wonder how people live in CO without four wheel drive? I don't think I would venture out that much if I had a two wheel drive vehicle here. It's okay for a few days to visit but to survive about 5 months of possible snow on Mountain Roads?
Our Day in Breck was just heavenly! We were dressed like Eskimos and therefor very warm. The Sculptures were beautiful and amazing and the lunch at our all time favorite Bubba Gump was scrumptious. We keep saying it is our favorite place to eat in Breck but the truth be told we love the food and atmosphere there so much we never ventured out to try a different place in 5 years :)

The other big news for me is that I took one item of my to do list due to several Mommy friends. I finally made the call and got an appointment with a Pediatrician for Connor and Alexander. Dr. Maynard from Iron Horse Pediatrics made a great impression and the best news is that he knows Dr. Soep well and that they are Colleagues as well. He was fairly well informed when we met thanks to him taking the time to read through Connor's medical file before the Appointment.
I also got a package that needs to be filled out with a 6 page questionnaire about Alexanders possible ADD/ADHD. I have to bring in the package and then they will review it and set up a special testing Appointment for Alexander as well :)

School this week went wonderful as well. The boys and I have found a great rhythm and we are working well as a team. We rotate each day as to who starts with the Video and Game section, and who starts with me working through this days workbook, when they are each done we rotate out. We make such great progress that we finish our day within 2 to 3 hours!!! Both Connor and Alexander love Math and will actually do all the assigned pages independently not wanting me to watch over their shoulder and all I have to do is grade them when they are done. Writing is still not their favorite but they are not complaining as much :) Now they still try to come up with the shortest words as possible ... for example if asked to write about an Animal in Africa, they will choose Lion over Elephant because it has less letters in the name for them to write - haha

Ron had to leave yesterday morning and will be gone for 4 days. We got a lot more snow last night and after I went and cleaned of the Front and Back Deck this morning we once again have a heavy snow fall. The boys love Sundays because they get to play some PlayStation or Wii, and today of course we are settling in for Super Bowl Sunday. Connor and Alexander love the Black Eye Pea's so they might not care as much for the game yet but are excited about the Half Time Show :)

I am ending today's post with once again saying how lucky I am to be surrounded by the most amazing, smart and funny friends a girl could ask for. Yesterday the boys had a fun play date and I got to have a great time visiting with a most wonderful friend.

Hugs,

R A C A

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