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, September 18, 2010

Wondering .....


I am a bit at a loss tonight thinking about all the sad and bad news that have come our way those last couple of weeks.

I want to start my blog tonight asking you to think about three kids that are struggling hard right now due to JDM. There is a little boy named Mason who has JDM and who was just admitted to the ICU this evening due to an infection. Then there is a girl named Addyson who is another JDM child and who has pneumonia. Then last but not least there is a girl named Jaylin who is struggling as well. Please remember that our children's immune system is very compromised and that something like an infection or pneumonia can be devastating.....

Connor has been doing well. He got his Methrotrexate Shot yesterday and today he had his moments of mood swings which seem to be the norm the day after. We had a busy and tiring day today and during dinner he started crying about not feeling well and being sad. About 15 minutes later he was up again laughing and playing.

The other weight I am feeling tonight and where my heart is hurting is for two different set of friends of ours who are dealing with a lot of pain and struggles right now.

One thing I learned is when you let your guard down and open up about your fears and feelings then the amazing part happens that others start opening up as well. This I find very moving because when you see your life of balance then the one thing that is hard to hear at times is the part at how every one's life is just so perfect.
How can it be that in the news you read or hear about kids struggling in school and with life, a divorce rate of over 50%, unemployment at a high and and a economy still trying to recover but if you talk to people around you then their life's are just all peaches and cream. The kids are all well behaved with excellent manners, they are all honor students and extremely smart, there never is any discord or arguments in a marriage and money is still plentiful. The question I am asking is 'Who are they?' At times when I listen to people talk I feel like I am from another planet .... oh wait, maybe this is why I am called a Resident Alien :)
Do not get me wrong! I do want my others life's to be happy and of course I do not wish anyone ill!

So to get back to my original thought, it seems the more I open up the more I find others opening up and this by itself is so freeing. Of course that also shows me how much pain there can be and then if you care for them you absorb that pain as well. My thought now is that I wonder how selfish I must have come across when I was so consumed with our fight against JDM and consequently I did not catch some of the suffering around me sooner. It is very good for me to get some compassion back for others!

Hoping that all of you will have a good Sunday.

Hugs,

R A C A


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