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

Sunday, February 17, 2013

The Impossible and the precious Carpenter Family!!!

Today my family of four was faced with the decision to what movie we should watch at the movies and for the first time my three men had no clue ... I saw my chance to put in my vote for a movie I heard about and wanted to watch ... 'The Impossible'.
I will honestly admit that pretty much from the beginning I started doubting my decision as to how the boys might be able to digest this true story about the Tsunami from 2004 and the fight for life for one family of 5. Mom, Dad and three boys.
Now that we watched the movie and had a nice dinner afterwards where we discussed the movie, I have to tell you I am very glad we went to see it!
For one is was a true story, involving kids around my boys age! Then the fact at how fast life can change ... Truly in just a heartbeat! We already experienced a tad of this with JDM but nothing as life shattering as the Tsunami. We had a wonderful talk about how nature can throw us those battles with no warning and how helpless we humans really are HOWEVER it also taught us that you can rise and still find good in the destruction around you.
We also talked about how you need to know to react when faced with disaster and what your true priorities should be.
Yes, my boys are just 8, soon to be nine, but goodness so many children younger then them had to fight for their life's in this and any other disaster, nature or man made. Why should they not know? Will protecting your child help or disadvantage them?

I will write a blog entry about another Family when I get home. The beautiful Carpenter, Sue, Kim and Kristen!
This is one family I never met in person but who I love and adore. Kristen has battled and is battling JDM for a long time now and Sue, her Mom, has been an Angel and support to all our JDM kids and Families with her kindness and support and generosity in making the most beautiful quilts for our babies. Quilts that make our kids feel safe and loved.
Kim and Kristen are twins like my dumplings and that draws me close to this family as well! Just a couple of days ago Kim was in a horrific horse riding accident and was thrown of her horse into a Jump.
She is in ICU at Stanford and has to many bones to mention broken in her face. She also has a brain bleed and swelling ..... The team, very large team, of neurosurgeons are scheduling a 11 to 12 hour surgery as soon as Kim is stable enough. They will need to open her scull from ear to ear to start their work.
Now all of the above is scary and heartbreaking in every way but now imagine facing this as a Mom on her own? To add to this heartbreak, Sue lost her husband not long ago to cancer, I believe. So now a widow who supports and watches over her 'babies' with a teachers income.
They could use your prayers and support. I am asking if you read this and live in the are of the Stanford Clinic in CA please reach out and help! I wish with all my being I could afford to be there. If any family deserves and could use some help they are it! They are NOT asking for it but I am asking for them!

Hugs,

R A C A

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