Archive for January, 2010

Attitude about FOP

January 31st, 2010

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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 nature, and so we didn't spend forever wallowing in sadness after our Miranda's diagnosis almost 3 years ago.  Yes, we struggled with it, and had to work stuff through, but after several months we got to the point where we could happily carry on with life.  ...

School and FOP

January 24th, 2010

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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 out that way - a whole other story).  If the child is diagnosed with FOP at a young age (ie, pre-school) as Miranda was, then parents need to put some thought into what level of assistance, if any, the child may need to attend school.  Of course, for home schoolers the ...

Miranda is 5 years old

January 17th, 2010

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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 the day??"  That evening, I laid down to sleep with a new, sweet baby girl beside me, and she was perfect. I remember that the next day, as I was discussing my baby with my midwife, she pointed out that Miranda had oddly bent looking big toes, and that her thumbs also didn't bend ...

Activities for a preschooler with FOP…

January 10th, 2010

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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 young for most things.  Recently, however, she's been starting to think about activities, especially since her friends are talking about them.  She knows, for instance, that a few of her friends take ballet lessons and another is in gymnastics.  Miranda is learning to swim, but that's a once a month ...

FOP in our world, 2009

January 3rd, 2010

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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 say with relief that a very significant thing DIDN'T happen - in 2009, Miranda had no new joint fusions.  Phew...!  I am delighted that she made it through the the year with little happening by way of FOP activity in her body.  Yes, Miranda had a handful of smallish flare-ups on ...