http://www.cureerinkate.com The Lives of Erin Kate and Miranda Sun, 07 Mar 2010 18:04:16 +0000 http://backend.userland.com/rss092 en Posted by Karen My kids love their grandparents...  Love love love 'em.  Lucky for Miranda and her brother Owen, they have a full set of four. Grandparents can be a terrific part of any child's life.  However, I think that when the child has a disorder like Fibrodysplasia Ossificans Progressiva, having gramma and ... http://www.cureerinkate.com/2010/03/fop-grandparents/ Posted by Karen Fibrodysplasia Ossificans Progressiva, which affects Miranda and her friend Erin Kate, has a prevalence of about 1 in 1.6 million people.  There are just over 700 people known to have FOP worldwide, with estimates of about 3500 total (in less developed countries, most aren't diagnosed).  With so few ... http://www.cureerinkate.com/2010/02/rare-disease-day-2010/ Posted by Karen As you may know, our family lives in a suburb city of Vancouver, Canada.  And, as you may also know, there's a teensy little event going on right now in Vancouver - the 2010 Winter Olympic Games.  Okay...  It's actually not so teensy; it's rather a very big whopping ... http://www.cureerinkate.com/2010/02/olympic-adventures/ Posted by Karen A few weeks ago I blogged about trying to find some good group-type activities for my gal Miranda, who has Fibrodysplasia Ossificans Progressiva.  I'm glad to say we got some stuff sorted out... I believe I mentioned that I signed Miranda up to begin "Kindercooking".  This is a class ... http://www.cureerinkate.com/2010/02/more-on-activities-for-a-5-year-old-with-fop/ 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 ... http://www.cureerinkate.com/2010/02/my-kid-who-doesnt-have-fop/ 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 ... http://www.cureerinkate.com/2010/01/attitude-about-fop/ 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 ... http://www.cureerinkate.com/2010/01/school-and-fop/ 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 ... http://www.cureerinkate.com/2010/01/miranda-is-5-years-old/ 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 ... http://www.cureerinkate.com/2010/01/activities-for-a-preschooler-with-fop/ 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 ... http://www.cureerinkate.com/2010/01/fop-in-our-world-2009/