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, August 11, 2011

Ron, my Husband and Best Friend!!!

Another Post long due but so important to mention! Everything I do and everything I love about my life revolves around the comfort of knowing that I have the support and advice of my husband who truly is in every way and form also my best friend.

My husband had to face and deal with a pain in his Right Shoulder now for 5 years. It is a pain that has been constant and has stopped him from doing many things he loved to do. He just had his second surgery on his shoulder but it all started August 25, 2006 when he was mugged in Santiago, Chile. The assault was pretty violent and it caused for one finger to be twisted and broken and also his shoulder being damaged to a point that has caused him pain from then to now. Those of you reading this that are the parents of a child with JDM know how paralyzing it can be to see someone you love in constant pain and the frustration that comes with the fact that just because your child does not look sick everyone assumes all is well. From the outside Ron looks healthy but the pain never goes away.....

Now throughout all of this he always put us and his family first by supporting us not just financially, and we all know now how important a good and stable job is when you have a child with JDM and also face an Economy that is scary at it's best at the same time. No, he also supports and helps me here at home in many different ways! Right now Ron is going to be at home for a while recovering from this latest surgery and trying to focused on Therapy and getting better (which has been a challenge due to his reaction now certain medications, which we are still trying to figure out - it caused him to be sick, nauseous, light headed and to hallucinate). Having him home and his willingness to support me on my newest adventure of trying to get myself in Shape and learning a healthier Eating habit has been nothing less then amazing. The only reason I am able to go on the Incline is due to him being home watching the boys. He also shows me his love by planning a surprise Massage Therapy as a reward and then buying me the best Workout Shoes (Trail Running Shoes) there are, plus two VERY pricey Running Bras ;) yes, trust me they are important! We are also adding a Treadmill to our Workout Room as I am not a big fan of the Elliptical we already have.

I said it earlier in a previous post how much better I feel now that I started taking care of my body and how much more energy I have to take care of our home. I could not have started this or keep going this direction if I had not the help and support from my husband.

So THANK YOU!!! DANKE!!! Ron, for always, always being there for me and the boys and never for looking for the easy way but always planning ahead. One thing that is very hard to do for a person like me that lives day by day.




Love You,

Anke

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