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 [...]
Posted by Karen
So I missed doing a blog last weekend… If anyone out there is reading this, and actually cares if I write, my apologies! Last Sunday, as it happens, Pete and I took Miranda and Owen to Washington State to meet up with Suzanne, her kids and her mother. The excuse for a get-together [...]
posted by Suzanne
Our medical insurance is now in effect and Erin has an appointment with her new pediatrician the first week of December. We all have to change doctors under the new plan but changing Erin’s doctor is much more nerve racking. Most likely this pediatrician has not heard of FOP (Fibrodysplasia Ossificians Progressiva). It’s [...]
There are lots of strange and puzzling things about Fibrodysplasia ossificans progressiva. One of those odd features is that FOP isn’t happening all the time, 24 hours per day from a child’s birth. Instead, it waits until a certain point in the child’s life, becomes symptomatic and then proceeds after that in fits and starts. [...]
By Karen
Anyone who’s been following this blog for a while knows that we try to let Miranda have as normal a life as possible. If this means doing things that have some degree of risk for a person with Fibrodysplasia Ossificans Progressiva… well, so be it. It also means that every now and again, fate is [...]
By Karen
Halloween is a time for all things strange and scary… It was fitting then (in a twisted, black humour sort of a way) that this past week, leading to the end of October, we had the bizarre and disturbing experience of watching Miranda’s bicep swell up to twice it’s normal size. And, believe it [...]
By Karen
On Friday of this week, our family took a trip to the Vancouver Aquarium. It happened that all four of us had a rare convergence of a day off work, school, etc, so we decided to go.
What does this have to do with my daughter Miranda’s Fibrodysplasia Ossificans Progressiva, you may ask? The answer [...]
