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

Monday, June 27, 2011

Funny tidbits from our Life ;)

Today I thought I see if I can add a smile to your life by letting you read some of what happens in our daily life.

This evening Connor just took his pm medications and when one pill did not go down as easy as the others he went and drank more water to help it along. Afterwards he asked me what a 'Heart-attack' is and I said it is something like the heart not feeling well and then it stops working right. He looked me dead in the eye and said 'Well Mommy, I just had one' ;)

Yesterday I was cooking Corn on the Cob, from my Farmers Market adventure, along with some baked organic chicken breasts for Dinner. I was so proud about cooking something more healthy as there were no starches added in the form of Rice, Potatoes and Noodles. Well, we all sat down and I put one corn on each plate. Just then it hit me what I had done. I have one son who has NO front bottom or upper teeth, I have another son with no bottom teeth and two very, very wiggly front teeth and I have a husband who can only use one arm. I guess two things needed to eat corn on the cob would be preferably teeth and two arms! I however am blessed to have three men in my home that are not easily shaken and they all figured out how then can gum away on the corn. I admit afterwards I was hoping Alexanders front teeth would finally come out but no luck just yet ;)

This past Friday I had to go in town to pick up some prescriptions for Ron and since it is summer I figured it is time for me to pull out my dresses again and wear them instead of my Jeans & T-Shirt look. Connor and Alexander LOVE when I put on a dress and they will follow me all over the house saying how beautiful and gorgeous I am. So when it was time for me to go they said I should not leave the house dressed like this because they don't want another man to see me and take me away. I told them this was not going to happen so they can relax. They did not let go on the subject and were convinced I needed to make sure no one would take me in their car to marry me or follow me home. Oh my precious, precious boys!!!
They did however settle down that night and said I should wear all my dresses all the time including me wearing my Wedding Dress to the Farmers Market next week. I can promise you you will NOT see me in my Wedding Dress next Friday ;)

Today we had a long conversation on what they boys wanted to do for their weddings. Alexander said he wants to go with his wife on a Disney Cruise and when they get to the Island he will throw her off the Boat into the Water. Good luck in finding a wife for him - haha. Connor said he wants his Wedding at a house with a pool and after the ceremony everyone will have a food fight and then jump in the pool with their clothes on. Well, his future wife better is a good sport - haha ;)

I know I could keep writing but those are just some moments that stuck with me tonight :)

Ron had Therapy again today and it went a bit better then last time due to him being able to take a pain pill prior. He is still managing on a pain scale of 6 and 7 at times and it would be nice to get the pain lower.

Now we are gearing up for an early night to bed as we have a 5:30 am departure for Denver's Children Hospital. Connor is getting his IVIG infusions there again this time plus the Bone Density Test will be performed tomorrow. Wish us luck that his Bones have improved!!!



Hugs,

R A C A

1 comment:

  1. We will be your long distance hospital buddies... CMH for us tomorrow with a bone density test for G on top of the other stuff... Your blog made me chuckle today. Thanks for the grins, and we hope Ron feels better soon!

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