Posted by Karen
This week we had a couple of experiences which got me thinking about the approach we take to life with Fibrodysplasia Ossificans Progressiva.
Let me start by saying that I’m pretty content with “where we are” in terms of having accepted FOP.  Neither I nor any of my family are depressive or downcast by [...]

Pretty soon I’ll be registering Miranda for kindergarten…  Wow!  My girl is getting so big.Â
Kids with Fibrodysplasia Ossificans Progressiva have a variety of different experiences with school.  A lot may depend on the age of the child when FOP became symptomatic and was diagnosed (hopefully soon afterward, but it doesn’t always work out that way - a [...]

Posted by Karen
As I told Miranda the other day, she is now “such a big, big girl!”  Preschoolers love to hear that stuff…
Friday, January 15 was Miranda’s fifth birthday.  Five years ago Friday, I woke up and wondered, “Geez, this kid is now 6 days late.  Maybe today is the day??”  That evening, [...]

Posted by Karen
It’s January, and we’ve signed Miranda’s brother Owen up for swimming and skating lessons.  He’s got a lesson going every night Monday through Thursday.  Until not too long ago, Miranda accepted this as natural and didn’t question why she wasn’t in any classes.  She was, after all, too young for most things.  Recently, [...]

Posted by Karen
‘Tis the time of year to do countdowns, lists, reviews, etc of all and sundry which happened in the previous 12 months.  And so, with that theme in mind, here’s what happened in respect of Fibrodsyplasia Ossificans Progressiva in our household in 2009…
First, and most importantly, I can say with relief that a [...]