Archive for November, 2011

A new FOP mom’s perspective, and more…

November 20th, 2011

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Posted by Karen I recently made the acquaintance (via Internet, but still) of a woman whose beautiful little girl, Addi, was recently diagnosed with Fibrodysplasia Ossificans Progressiva.  While going through all the strong and difficult times that entails, my new friend, Shannon, also started a blog about her family's journey with FOP.  Recently, Shannon and her family had the chance to meet Dr. Kaplan, FOP doctor extraordinaire.  Today I want to share with you Shannon's blog about that meeting.  Check it out at: http://fopjourney.blogspot.com/2011_11_01_archive.html I'm so glad to see that Shannon found the meeting helpful and inspiring.  From my own perspective, one thing which is so great about Dr. ...

Flu shot fiasco, Part III

November 13th, 2011

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Posted by Karen Why can't getting a flu shot EVER be a simple thing for Miranda? This is the third year in a row that we've experienced drama and/or confusion and/or delays in getting a simple flu shot for Miss M.  I have to say, this is getting kind of old... [caption id="attachment_1507" align="alignnone" width="244" caption=""Waahhhh! I don't want a flu shot!""][/caption] Before I tell you this year's story, though, a bit of background.  Of course, nobody wants to get the flu - but for people who have Fibrodsyplasia Ossificans Progressiva (FOP), as my daughter Miranda does, there's an extra reason not to get ...

For Arica…Thanks for making me smile again

November 11th, 2011

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posted by Suzanne I should be sad today.  Why?  Because I have been kind of sad for awhile now. But I am not today. Of all days to feel happy, the beautiful fall weather here in Seattle has turned dark and rainy.  Instead of dry leaves littering our lawns and street, we now now have wet and soggy vegetation everywhere.  Erin loves to play outside with her friends and can't today because of the storm rolling through. Lately I find myself having more sad days than happy days.  This morning I realized that I have been sad for a very long time.  I have ...

FOP Stole My Precious Memories

November 6th, 2011

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Posted by Karen Age 18 months to 3 years is a really fun and exciting time in a child's life.  That's typically when a kid starts talking and building her or his language skills.  I have so many great memories of my son when he was that age...  I remember his funny pronunciations of some words, quirky expressions he had, the first things which caught his attention and the things he wanted to talk about.  Those are some of my favourite things to remember, and I have a lot of fun telling my kids stories about those times (my son, Owen, is now ...