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

Tuesday, October 12, 2010

Back to Life but not to Reality :)



A wonderful friend of mine mentioned to me a week or so that she knows our life is getting back to normal because I do not write in the blog as much or as frequently and she is so right in that regard.


I said it before and say it again that one out of many things JDM brought to the forefront is how much it changed our life’s to the core when it came to how we lived day to day. The boys have been brought up in the same spirit as Ron and I lived our life’s and a huge part of it is the fact we love to travel and make the most of Ron’s Job as an Airline Pilot. Especially now that he is so close to retirement. I lost count on how many times the boys have been on airplanes since we had them and we used to keep a Log Book for them but stopped using it when we reached 30 flights or so. They had a Passport since age 1 and used it more then a lot of grown-ups I know. This is not better or worse but it is who we are and what we want for them growing up. A knowledge in places and people, something I believe they can not learn from Books alone.

We looked so forward to this month of October because we knew it would bring a breath of what and who we are back into our life and it started with Ron being transferred TDY to Miami for the whole month of October. It is also the month Connor is getting his wish come true in the form of a Disney Cruise. We will leave for our Make A Wish trip in just 3 days from now but right now I am writing this blog entry on our flight from Miami back to Denver. We spend three heavenly days in Miami Beach with Ron and the only time we were reminded of our enemy called Juvenile Dermatomyositis was the two times a day when Connor got his total of 12 medications, seven in the morning and five in the evening. Of course I also feel JDM when it came to preparing for our trip and making sure we had the right amount of medication to carry us through this trip and now coming home and getting all his refills for our next departure. We also have his Methrotrexate Shot on Thursday before leaving Friday but at this point and time this is an evil I can deal with if it gives us back the core of our life’s which is traveling.


Thank You so so so much to my wonderful and amazing husband who does everything in his power to provide for us and getting us back on our feet. He made this trip to Miami possible, and hearing Connor and Alexander laugh almost nonstop while playing on the beach or swimming in the Hotel Pool was magical. Of course I am also not denying that playing with our boys without a worry and timeframe and also having Mimosas at the Pool was hands down the best Therapy I have ever had!

I know not everyone reading this can identify and not everyone that knows and loves me understands complete how much it means to me to be able to be on the move. I truly love the home and friends we have in Colorado and I know I am more content and a better friend when I get the chance to go somewhere as well.


I have to say I feel bad for not keeping an up-date on Sandy and Naoma Morgan on my last two blog entries. Naoma is doing very well and recovering nicely when I last talked to them before we left for Miami. I hope all is still going very well when I talk to them tomorrow! I might not always mention everyone that matters so much to me and my family but so many of you are on my thoughts all the time.

Hugs,


R A C A


P.S. We made it Home by 10:49 PM and the boys were asleep within 20 minutes of our 2 1/2 hour drive home. I was glad to see it was a ‘warm’ 48’F in Denver when we arrived but had to put gas into the car in Divide which was a chilly 30’F.

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