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, May 16, 2010

Bears and making progress :)

So now I realize I went from posting once a day to averaging now once a week .. maybe :)
Well the problem is that I started this blog to journal Connor's journey with JDM and not much is happening at this point other then the huge fact that he is slowly but surly getting better :)

Our life of course is never boring in my eyes so I will try to write something to keep you all in the loop - haha

Connor is finally getting to the point were he does not want to accept he is sick and he is doing everything in his power to prove to us that he is well. This of course is leading to tiny discussions about us bringing his wheel chair with us when we go somewhere to him being self conscious about parking in disability spots. Ron and I of course know his limitations fairly well and if we let him push himself to far then he gets tired, cranky and very moody.

One part I thought I would not have a problem dealing with this year might still be a factor. I was hoping to get around any season passes for either the Zoo or the North Pole and I just know that sooner or later my boys will realize that the North Pole is open now and they will want to go. In the last couple of years we always got the season pass and we would go to the North Pole about once a week and the Zoo about once a month. I am skittish about the North Pole due to the kiddie rides and Connor's ability to go on them with his weak neck. Then the Cheyenne Mountain Zoo of course is beautiful but as the name reads it is set on the site of a Mountain. Extremely steep in places for Connor to walk but maybe a great exercise for me pushing a wheelchair? :)

You all know by now how often I point out the differences in looks my identical boys are having but I will still give you an up-date on where we are now:
Connor is about 2 inches shorter then Alexander BUT about 5 to 6 lbs heavier. He has hair growth most balding men or women would go crazy for. The Cyclosporin he is on has given him a hairy back, hairy legs and arms but also a hairline that is almost touching his eye brows and mentioning eyebrows he is close to sporting just one big uni brow. His whole hair structure has changed as well. Before both Connor and Alexander had fine straight hair and now Connor's is thick and wavy.
So if there ever is a run on the drug Cyclosporin then I know why. Hair transplants would be a history as long as people are ready to overlook the side effects, well at least those that don't really need their kidneys ....

Most of my Facebook friends already know that the Bears here in Colorado have come out of Hibernation and that we had our first visitor for the year. He or She decided to take our 2 yard dumpster apart on Friday Night so our whole family had a fun bonding time yesterday picking up and collecting Garbage again. It was a great learning tool for the boys and us since we learned that the specimen that visited us does not like Lettuce, Carrots, Celery or potatoes but loved Yogurt and sweets plus some ham. The sad part is that we once again have to be careful about letting the boys out to play in our forest and even thought the dogs are with them the risk is just to much right now. Ron fixed the Container and he secured the lid very tight and this morning we woke up to no garbage flying around :)

I hope that all of you are well or as well as can be expected. I have been repeatably told I seem tired lately and I will not disagree with that assessment. I do feel tired and a 7 day vacation somewhere in Hawaii would sound like heaven right now. So see, no worries here since I am still alert enough to dream :)

Hugs,

R A C A



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