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Cara David
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3 Down 2 to Go
Weeks until braces off that is...  At least according to Leo the Ninja Turtle that is.  Leo is our official holder of our countdown chain (an idea from a good friend and Hurler dad, Todd.  Leo was a gift from his friend Eli.  It is a cardboard cutout and st...

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I've Got That Power
After 9 hrs. of surgery and only 3 nights recovering in the hospital we were able to bring Coleson home on Friday, a whole 4 days earlier than expected.  I am biased but my kid has super hero strength to recover from surgeries. Monday evening's "talk" about...

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Here We Go Again!
One of Coleson's favorite songs to sing and dance to is "That Power" or as he calls it, "Math Power" by Will.I.Am.  He mistakenly sings the refrain, "Here we Go, Here we Go, Here we Go Again", which is kind of how I felt talking to Dr. Walker, the orthopedi...

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We Have a Date!
For surgery that is...I was both elated and felt my heart sank all at the same
time when after 5 months of weekly harassing two different Dr.s offices, I
heard the news that Coleson was finally approved for surgery.  Elated as
it meant that his skull and sp...

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Back to Reality
We are back to Arizona and back to “normalcy” (whatever that
means)!  Things didn’t go as planned this summer but I think they went as
God intended.  We ended up having a really good summer (minus the few
hospital days) packed full of friends, family and fu...

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Surgery, What Surgery?!
For those of you on Coleson's Facebook page, some of this will be repetitive, but I tend to be more detailed in my blogs than I am on FB.  For those not on FB, I apologize for the lack of updates.  I actually tried to post on Thursday but blame it on the la...

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New Surgery, New Plans, New Attitude
HOne of the hardest parts about this process is the complete loss of control over the well being of your child.  You get hit with this overwhelming information, just enough to fill you with anxiety but not enough to put all the plans in place or put you at ...

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It's What's on the Inside that Counts!
I was hoping to start this entry with news of a successful surgery today but as one Hurler mother recently said, we need to be prepared to expect the unexpected.  I thought I had accounted for the unexpected by reserving a house for the summer but nothing p...

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Help Support MPS Research with Triple Match Now - 3 Weeks til Surgery
Its 3 weeks and counting until Coleson’s surgery.  Each
day brings more and more anxiety.  I recently learned that a young girl
who had the same surgery as Coleson cannot feel anything from her chest
down.   Her surgery was more than 10 days ago.  This is t...

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The Countdown Begins (30 days & counting)
30 days until we leave for Minneapolis and 34 before Coleson
has his surgery (May 24 th ).  Coleson will be having 4 surgeries
in 1, double pelvic and double femur osteotomies.  The pelvic osteotomy is
to correct a “shallow” socket that if left uncorrected ...
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