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

Thursday, November 4, 2010

Halloween, Friends, Judo, Doctors and Therapies ...















I have skipped over so much those last two weeks and what stands out the most is how much we as a family love Halloween and how much fun we had celebrating it :)
This year I got treated to my first all grown up Haunted House, the 13th Floor in Denver, and it was such a high. The actors were amazing and scary and I know there were times I was laughing so hard I had tears in my eyes. Now they tell you when you enter that the actors will be very pushy, in your face, possibly rude and are allowed to touch but you can NOT touch them. So all was well until I was staring at a huge spider and when I turned I had some kind of zombie looking right in my face ... I tell you I jumped and pushed him by reflex about 4 feet back. The good news is that he was laughing about my reaction as much as I was :)
We spend the whole weekend with part of the Olson Family, Jennie, David and Zachy and it was fascinating to see Jennie Skype with Matt in Iraq and how great the connection was while I had a hard time getting a good connection with Ron in Lima, Peru. Figures that we are better connected to the Middle East then to South America - haha
We also got to see parts of the Emma Crawford Coffin Race which was more busy then I thought. They estimated about 7000 spectators down Main Street Manitou Springs. Google 'Emma Crawford' if you like to get the history on this race and you will see why this is such an interesting story :)
So and Saturday evening we also went Trick or Treating at Gold Hill in Woodland Park which was as always a great setup.
The boys collected of course a lot of Candy and I can tell you the Halloween Witch was happy to get enough to trade it all in for a Buzz Light Year and Woody from Toy Story.

Now this last week was pure backbreaking when it came to our schedule and it would have been hard if we all felt well but we were all dragging and the pain in my back was not really helping me keep a good composure or show the patients I needed so badly at times.
There were three happy events this week but they never less had us on the move. Alexander just loves Judo with all his heart and finally I am so happy to see him be joyful about something and super excited as well. The lesson takes 2 hours twice a week and he stays fairly focused through most of it. Everyone in this Dojo (sp) has a heart of gold and treats him so well. Of course Connor is not happy about the fact that he can not go but Ron and I are both in agreement that this is a great lesson for him to learn. For one so much time has been focused on Connor this past year and how many weeks did Alexander sit on the sideline watching Connor ride Horses during his Hippo Therapy?
This was then of course the other pleasant event this past week the hour spend watching Connor smile riding Alli. There truly must be magic with those therapy horses because every child I watch on them have smiles as big as it can get no matter how disabled or sick the child is. What a gift!

The unpleasant events were my three visits back to the Chiropractor due to my back, Connor and Alexanders Eye Doctor Appointments and the Dentist. We also had Connor's three Therapies as well again PT, OT and Speech. All of this kept us more in the car traveling and waiting in waiting rooms then at home. This of course set us back in school again so we had to work all through the weekend. I am lucky to no end to have boys that do NOT complain but always go with the flow. They have no concept how different their life's are right now compared to other 'healthy' six year olds but then what is normal? Alexander now probably things it is normal to have school time in a crowded waiting room ..

Now I have to say I admitted earlier that patience was not my strong suit this week and here is one thing that bugged me to no end ... something so small that it would usually just cause a shrug...
For the last two years the boys got a health screening at school. Last year they supposedly failed both the hearing test so we scheduled an appointment with a highly regarded Doctor in the Springs to have them thoroughly tested. Well, happy for us they both passed with flying colors, so no concerns. This year Alexander failed the depth perception test so we made an appointment with an Eye Doctor which turned into a complete disaster. I figured I schedule them both for a complete check-up just to be sure and as with the ears last year they both passed all the tests but not until after a huge meltdown from Connor due to the Dilating Drops. He does not mind being injected every week in his tummy by his Chemo Drug but the Eye Drops were his complete undoing.
Now, Yes, I am glad they had the complete check ups and they are fine but how can it be that they fail something each year during the health screening? and I admit it is painful for me to have to pay $200 each time for a visit when it is just a checkup ... It is not like I do not have enough worry about Medical Bills.....

All I hope for us is that this next week will be calmer. I could do with being snowed in for a few days - haha

So Thank You to all my friends who understand my moods so well and know when all I need is an ear and some laughter in my life... and sorry to all the strangers who throw their opinions my way because when I am in the kind of mood I was in last week I do not take prisoners especially when I am craving a good argument :)

Hugs,

R A C A

P.S. I posted a Video about Connor's Hippo Therapy on Facebook. I am not sure how to attach it here yet but will when I figure it out :)



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