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

Thursday, May 26, 2011

Summer Time :):):)

Today was Connor's last day of Hippo Therapy for this summer :) We will take a three month break and in the end of July he will get another Occupational Therapy Evaluation and we will see then if he needs to continue with Therapy or if he is done. I am breathing a huge sight of relief because those weekly trips to Edwards, CO, have been time consuming. 1 1/2 hours one way for a 45 min Therapy Session is hard. It takes up so much of the day and the only reason I did not skip that Therapy was due to Connor enjoying it and me really seeing how he was improving physically. Now we are at a point were he is so much stronger again, his endurance levels are high and I am not sure how much more he will move forward from there. Of course he will always benefit from some kind of physical outlet but maybe we can turn it to a sport closer to home.
We have been on the 0.75 ml of Prednisone for a week now and he is doing very well. Even his Methrotrexate Injection went okay this past Tuesday. It is much more painful for him then it used to be but that is due to him being so skinny again. I can't find a fatty part on his body to safe my life. So there is not much cushioning the injection and the dosis has not gone down but up.

We are now going to go into this summer break with a focus on improving the boys reading skills and of course a balance of fun activities. We are looking at one or two possible trips and Thanks to some planning of fellow Mommy friends here in CO there might be quiet a bit of Pool time for my boys as well. I never said I would say this but not having a pool in our back yard as we had in Texas has been an adjustment. I do NOT miss the work that came with it but never less it was a lot of fun as well :)
Now today was the last day of school for the schools around here where we live and I was truly not prepared to be hit so soon with the not so much anticipated Holiday Traffic we face each summer. Now I know I chant to myself each year that I am grateful we live in a State that attracts Tourists, but oh it is hard when you sit at an intersection in our small Mountain Towns and it takes you 10 minutes to get out because you are counting numerous Campers, Fiftwheels, Trailers, Motorcycles etc etc. Today I already passed 8 Campers!!! I will tell you later what the record for this summer will be :)
I also realized again today that I must be careful what comes out of my mouth because while driving to Therapy Connor said from the back seat that he is not that excited about Summer. I was asking him why he would say something like this (expecting it had to do with me telling them a couple of weeks ago that we will have school throughout the summer), Oh NO, he said he will not like it that all the places he loves so much will be busy and full of people. Yes, the world is our playground just not during the summer and spring breaks - haha

Wishing you all a smooth start into this summer break and happy but safe travels.

Hugs,

R A C A

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