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

Friday, March 18, 2011

Catching up on a couple of amazing weeks!

The last two weeks have been nothing short of amazing! 


Today I will start with the sad news that are on my heart but want to finish with the happy news as in how wonderful the last two weeks have been for me and my family.


The sad news of course are from around the world. My heart has been so heavy with the devastation in Japan and how they are now trying to control the Nuclear threat. How can one not be amazed and also horrified how there are numerous workers working inside the Reactors, facing certain death, but being committed in trying to save their families and the country they love? Plus of courese there is still the turmoil in the Middle East as well.


On our local front however things are looking much brighter. Connor is still making amazing progress in Hippo Therapy and I made two wonderful Videos of him standing on Blinkers back again and then Connor rotating 360' on Blinkers while he was walking. 
Then we got to experience a different Infusion Center this week. Connor was setup with the Infusion Center in Colorado Springs that is connected with The Children's Hospital in Denver. We had one thing going for us in trying to get Connor to like a new place, we had his Miss 'Jaja' (this is what my boys called her when they first started talking and could not pronounce Sonya) with us. At first Connor was disappointed because he wanted to show to our friend Sonya how wonderful TCH was and how he new the Nurses there but the new place turned out very quaint. It had a very comfortable feel to it and the beds in the rooms aren't even hospital beds but a normal day bed. There is a small kitchen, a reading room and a Video Game Room. Each room has a TV that plays DVD's and VHS movies. There were about three Nurses and one Doctor. I was told there are about five nurses on rotation and three Doctors. So it will not take long to know everyone :)


We of course we were super excited about the arrival of the Herndon Family. Aaron, Sonya and their beautiful twin girls, Addie and Ren, arrived on Monday the 14th from Oklahoma. We spend a fun afternoon at the Cheyenne Mountain Zoo and then on Tuesday, my 40th Birthday, Sonya was so kind to spend the day at the Clinic with Connor and I, while Ron, Aaron, Addie, Ren and Alexander had a fun day on our Mountain riding the 4 Wheelers. That night we had a small German Dinner and just relaxed. Pure heaven! So and the last day of the Herndon's stay in Colorado we decided to take a trip to Cripple Creek and tour the Molly Kathleen Gold Mine and have the boys take their girls on a Date to the Cripple Creek Candy Store. Both Connor and Alexander were so excited and each took $10 Dollars with them, surprisingly they each only spend a bit under $5 for their Dates and themselves. Alexander I have to say is so in love with Ren that he did not leave her side for the three days they were here! Precious. I on the other hand I think that age 6 must be the best one of all. I loved how much fun all four kids were!
So we came home from Cripple Creek very tired but for some strange reason my husband said he wanted to eat out that night at my favorite local Restaurant McGinty's. I was trying hard to convince him to just order some Pizza but we do have the tradition of eating out on the last day of our visitors and Ron who had stayed home working all day deserved a break in my opinion. So off we went to Divide and I can honestly say that this must have been the biggest surprise ever when we walked in for me to see 18 of my favorite people there. There were a few of my friends who asked if I really had no clue and all I could think was of course I did not because I would have made a bit more effort in looking nicer - haha. Just kidding! It was the most fun evening and I want to Thank everyone that was there. It meant so much and I am still carrying that smile just thinking about it :):):)


We are back to normal now as our precious friends returned to Oklahoma and Ron headed back to work after being off for the 5 days to be there during our friends stay and my Birthday.


So by ending today's Blog I want to Thank my Husband who shows me love in so many ways. I am so grateful to have him by my side through all our highs and lows. He said it took him numerous txt messages and phone calls for two weeks to plan the surprise and I am truly not sure how he did it. Thank You to all my friends and their children for showing up and making that night so special. Thank You to Aaron, Sonya, Addie and Ren for choosing to spend your Spring Break with us. It was pure happiness for me!


Hugs,


R A C A

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