Archive for July, 2009

A shift in thinking

July 25th, 2009

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Today I was thinking about what to blog about this week, and at first nothing came to mind.  I couldn't think of anything FOP-related that happened  to us recently - it's been just a regular hot, summery sort of July.  But...  On further reflection, I then realized that was wrong.  FOP actually did affect a number of things in our lives this week, just like it always does. I can't tell you what an enormous relief it was when I was finally able to get past the trauma of having our child diagnosed with Fibrodysplasia Ossificans Progressiva.  For many weeks after ...

Head bumps

July 19th, 2009

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I have a particular paranoia about Miranda bumping her head.  Unfortunately, this week, she managed to justify my paranoia by falling and hitting her head THREE times...  Groan. Back before we knew about my sweetie having Fibrodysplasia Ossificans Progressiva, she went through a phase where she had a series of puzzling, repeat swellings on the head over several months.  Some were connected to specific incidents, and some didn't seem to have any cause.  One thing was definite, though, which is that if Miranda would trip, as toddlers are wont to do, and bonk her head, the result would inevitably be a big goose egg out of ...

The “I don’t know disease”

July 11th, 2009

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I've been thinking about a quote from an FOP mom I heard a while ago.  It goes something like this:  There's just so much we don't know about FOP.  Almost every question you can ask about life with FOP, the answer is, "I don't know.  I don't know.  I DON'T KNOW!!!" For me, this quote really captures the uncertainty about so much with Fibrodysplasia Ossificans Progressiva.  Consider these kinds of questions, for example... - If you become symptomatic with FOP at a young age, does that mean you'll have extensive disability earlier in life than someone who becomes symptomatic older?  Maybe, but not ...

FOP Mothers’ Retreat

July 3rd, 2009

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OK, I haven't done a blog for almost 2 weeks now, but I have a good excuse...  Last weekend I went to an FOP mothers' retreat, and I was there from Friday morning through Monday evening.  No time to blog. ;) The retreat was held in a picturesque little town on the coast of New Jersey.  The only qualification for attendance was that you had to be the mother of a child (of any age) who has Fibrodysplasia Ossificans Progressiva.  It was a FANTASTIC event, and I am very glad I attended.  I flew to New Jersey on a "red eye" flight ...