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, June 26, 2011

Daily Life at the Smith Home :)

So we are now 9 days away from Ron's surgery and he is holding up very well. He is of course still uncomfortable and in pain but he has found a good rhythm on going about his days.
He had one very rough day on Friday as he had his first Therapy Evaluation at 8:30 am and we thought we combine the trip in town with a visit to the Farmers Market. We first thought we would have breakfast in town but figured it be more comfortable to head home and eat. Well, about half way through breakfast Ron said he needed to lay down and he must have been asleep within a minute of hitting his pillow. The boys and I did not see him again until a quarter past 1 pm when he woke up. I told him I was going to take a nap now and when I got back up at 2:30 I once again found him asleep in bed. This went on for most of the day and I am guessing it just wore him out to walk and the Therapy in the am.

So today he figured he wants to start building up his stamina again and we took a wonderful and fun hike around our Mountain. I did not bring a camera this time but there were so many picture perfect moments of the boys running around the grass and the rock formations with their girls, Apple and Tasha, right at their sides. We ended the hike with some splashing in the sprinklers and me laying in the hammock. Perfect Sunday afternoon!

Now our boys have become very domesticated this past week. We had a little discussion past Thursday as in how much work they have to do each day in picking up their toys and how 'little' work I had in regards to cleaning and cooking. So I asked them if they wanted to trade jobs and they both agreed in a heartbeat. So most of Thursday afternoon they spend dusting, vacuuming and mopping. They then helped prepare dinner as well. Everything they said they enjoyed doing BUT the vacuuming. To hard according to my dumplings :)
Today, Connor prepared a fruit salad so you know what we will be eating for Coffee and Cake today ;)

Yesterday the boys and I also got to enjoy the Donkey Derby Days in Cripple Creek which was a lot of fun. We met Shelly, Clare and Alexander and we had an exciting afternoon. The boys participated in the Donkey Calling Contest and were a bit sad to not win the price but they were shinning stars in front of the stage :) My one suggestion to the people running the Beer Tent would be a trip to Munich. While Clare and I craved a cold beer we were not tempted enough to stand in a line of about 60 people. I think we Germans could teach them a bit or two about how to efficiently serve beer to a large crowd - haha
Never less we did not give up on the cold beer but decided to all head to our house and have it there. I do serve up a nice beer and even deliver it in an original German Beer Stein. The kids loved playing outside while we 'grownups' had some fun time coming up with our bucket lists of what we all would love to do in our life time. FUN.

I also loved following all weekend the CureJM Conference, happening thanks to Facebook. How proud I am to say we are a part of such an amazing group. There were so many CureJM Mom and Dad runners in the Rock and Roll Marathon in Seattle and a wonderful support on the sidelines rooting for them that they were even mentioned in the Seattle News Paper. There was over $188,000.00 raised for that event and it brought us all very close to the goal of $200,000. So should anyone read this and feel the need to donate please feel free :)
One Mom Marathon Runner, Erica, had the names of JM Children written in Permanent Marker all over her legs and arms. Connor was so thrilled to see his name on her leg. What a great way to bring attention and to honor all those precious kids.

So I am leaving you with a assortment of pictures from the last couple of days.









Love,

R A C A

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