Archive for May, 2010

Bittersweet moments with FOP

May 30th, 2010

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Posted by Karen In the early days of our life with Fibrodysplasia Ossificans Progressiva, I heard from many people that when FOP becomes symptomatic in young children, the parents are more emotionally affected than the kids.  I'm sure this is true.  The child grows up with FOP and will never remember anything different, but the parents have to shift gears from having a "typical" child to dealing with the consequences of FOP.  This is, to put it mildly, quite an adjustment... I've mentioned in other blogs that Pete and I have adapted to our Miranda's FOP about as well as could be hoped or expected ...

The saga of the bidet…

May 23rd, 2010

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Posted by Karen On Friday of this past week, our bidet was finally installed. We decided to get a bidet to give Miranda some measure of privacy.  Bad ole' Fibrodysplasia Ossificans Progressiva has locked Miranda's shoulders and elbows and made it impossible for her to do everything bathroom-related on her own, but with a bidet, she can be independant for at least part of the process.  I first learned about bidets as useful for the FOP community in June of 2009 when I went to an FOP mothers' retreat and tried one out at our host's residence...  From that first introduction began a surprisingly looooong ...

Kindergarten, Miranda and FOP

May 16th, 2010

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Posted by Karen Miranda will be starting kindergarten this fall, as I've mentioned before in this blog.  Yay!!  I'm excited about this, and really looking forward to it.  Miranda is too, which is good. My little gal is excited about it for all the usual reasons - she'll be a big kid, going to school with her brother, learning stuff, etc.  I'm happy about those things, but there's an additional bit too...  When Miranda was first diagnosed with Fibrodysplasia Ossificans Progressiva, I seriously wondered whether she'd be able to do any "normal" things.  Of course, I learned that she definitely can - ...

Riding from Niagara Falls to TO for FOP!

May 9th, 2010

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Posted by Karen Back in May of 2009, I had the good fortune to meet a lovely young woman named Valerie Herce.  I met her in London, Ontario at the first ever conference and general meeting of the Canadian FOP Network.  As you can probably guess, Valerie has Fibrodysplasia Ossificans Progressiva. It turns out that Valerie also has a very devoted and determined younger sister named Vanessa.  Recently, Vanessa decided to do her part toward finding a cure for FOP.   Vanessa says as follows: "I’m tired of seeing this disease affect my sister and so I have decided to do something about it. On June 17th, ...

Miranda’s evolving FOP headband

May 2nd, 2010

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Posted by Karen Anyone who's met Miranda, or seen photos of her, knows that she wears her protective headband whenever she leaves the house.  We learned from painful experience that if Miranda's not wearing it, and she trips and bumps her head, she develops a ridiculously huge goose egg at the site of the impact.  The bumps are sensitive to touch, and prompt much worry from mom and dad about the swelling spreading to the jaw area and causing a fused jaw (shiver - it hasn't happened yet, but could).  Thank you very much stupid Fibrodysplasia Ossificans Progressiva... When Miranda was first diagnosed, ...