Archive for March, 2010
FOP websites and blogs
March 28th, 2010
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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 by-line is, "Viewing the world from a different angle." If you aren't familiar with FOP, you might not get this joke, so I'll spell it out - FOP often causes scoliosis and atypical body postures (particularly over the longer term), so this is good double ...
Little kids, FOP and bathrooms…
March 21st, 2010
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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 you'd expect. He finally figured out how and when to use the toilet, and in those early days, we dressed him in loose pants with stretchy elastic waists. At first I'd pull his pants down and up for him, but after a while, he of course progressed ...
A different perspective on FOP
March 14th, 2010
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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 biological prison sentence, and that it's nothing short of a disaster. You feel like no-one has a bigger burden to bear.
It eventually happens, however, that you get a bit of distance from the diagnosis. And, you begin to realize after a while that compared to some ...
FOP grandparents
March 7th, 2010
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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 meaningful. From the parents' point of view, having one's own parents for support is invaluable, for both emotional boostering and also practical help. From the point of view of the child with FOP, a grandparent can be a person who provides some silly fun, and a ...
