Posted by Karen
Very recently, an adult friend of ours with FOP started his own blog. I’m seizing this opportunity to tell you about it and also about some other websites and blogs featuring Fibrodysplasia Ossificans Progressiva.
The guy who started the new blog is called Nick Mahler. His blog has a great title - “The Crooked Guy”. The [...]
Posted by Karen
When my babies were in diapers, I couldn’t WAIT for the day they’d finally be out of them… Especially when they were big strapping toddlers and would kick, struggle and protest during the changing process. Ugh, not a fun part of parenting kids that age.
With my older child, Owen, everything went pretty much as [...]
Posted by Karen
When your child has just been diagnosed with Fibrodysplasia Ossificans Progressiva, you hear a whole lot of doom and gloom… “One of the most disabling disorders known to mankind”, “horrific disease”, blah blah blah. All that stuff is very, very hard to take. You feel like your child has been handed some sort of [...]
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 gramps around is all the more [...]
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 sufferers, FOP is considered an [...]
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 deal in our fair city! [...]
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 for 3 to 5 year [...]
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.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 [...]
