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 [...]

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 [...]

I’ve been thinking about a quote from an FOP mom I heard a while ago.  It goes something like this:Â
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 [...]

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 [...]