Posted by Karen
Of course, the purpose of this blog is to discuss all manner of stuff connected to my daughter Miranda and her Fibrodysplasia Ossificans Progressiva.  As such, I usually only mention my son, Owen, in passing.  I think it’s time I rectify that a bit and tell you about Owen, and how FOP affects [...]

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.�
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 [...]

Posted by Karen
Hey everybody, HAPPY HOLIDAYS!�
Before I tell you how much fun our festivities have been so far, I want to give a really big, heartfelt thanks to all my friends and family who donated recently to the Canadian FOP Network.  Your donations mean so very much to us…  Research into FOP is largely funded by private donations, [...]

Posted by Karen
OK, so the title of this entry is kind of clumsy.  However, I want to get “FOP” in the title of each of my blogs, so please forgive me.�
Anyway…  What makes a great Christmas party, if you’re a kid?  I’d have to say, in no particular order, fun holiday crafts, making gingerbread [...]

Last year around Christmas time, our little area of the world had a HUGE dump of snow.  Way, way more than usual, and we dealt with giant snowdrifts and icy roads for multiple weeks.  And, no big suprise here, a couple of times when we went out with Miranda, she slipped and fell while walking across [...]

Posted by Karen
In this blog, I spend lots of time talking about how our family lives and copes with our daughter Miranda’s FOP.  I try to convey the sense that despite FOP, Miranda has a terrific life and is just like any other little girl.  And that stuff is true…  It really is.  I love [...]