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

Saturday, November 26, 2011

Gearing up for Christmas ...

I can not believe that we are as good as done with setting up our Christmas Decorations for this year! It has been a busy last two days but the best part about them was the fact that we never left the house! I am not to eager to head out to any stores but unfortunately my refrigerator and pantry are asking for a trip down the mountain ;)

I did read a blog entry today from Hopes Mom and how it is not possible to feel all joyful over any Holiday once you loose a child. Yes, there is still gratitude towards others but the pain over shadows it all. I wonder how many of us think about this when we hear all the time how thankful we all should be .... Reading her blogs always make me so sad but I know I am wiser and my eyes are more open do to reading them!

Thank You to the Stenzel Family for the remark under my last post! I tried to respond but the blog would not let me so I am posting here instead! Connor is adjusting really well to the change from the injections to the oral Methrotrexate and we have not tapered any more on the Prednisone. Dr. Soep figured we take on one battle at a time :) He has been complaining about some knee and leg pain lately but only after he goes to bed, never during the day. So this has us wondering a bit as we think he might just likes to push back bedtime.
How are the three of you? Hoping Emma is doing great and that the Holiday Season will be a fun one for you all!

To my friend Trudi, I am so thrilled for you and your new toy! I know many people say that true happiness can only come from within but I tell you I feel such joy and happiness each time I pick up mine ;) you know what I am talking about and I am not mentioning the name because I am sure most reading this blog are tired of my fan club towards one company. Hugs and enjoy!

So I am off now to put our two dumplings to bed. Alexander has been under the weather all day with some diarrhea and we hope he will bounce back tomorrow.

Good Night!

Hugs,

R A C A




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