Archive for March, 2011
Spring Break 2001 in California! (and FOP)
March 29th, 2011
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This past Sunday, our family returned from a week-long trip to sunny California. It was a wonderful vacation!
We visited San Diego for just over 2 days, and then Anaheim for an additional 3 days. Our objective - theme parks. Sea World, the San Diego Zoo, Disneyland and Disney’s California Adventure Park were on the menu.
Anyone who’s done this type of trip knows that all this stuff involves a LOT of walking… So how does that affect a person with Fibrodysplasia Ossificans Progressiva? Honestly, I wasn’t sure what problems our Miranda, who is 6 years old, might have. Her back, ribcage, ...
Had A Good Run While It Lasted
March 23rd, 2011
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I am kind of sad today. The last few days I noticed a couple of things with Erin. On Friday while she dressed, she started putting her right leg into her pants and then left. On Saturday when I dressed her, I started with her left and she said, “No Mommy. Do this leg first so it doesn’t hurt.” Oh crap! What now?!?
Sunday I noticed that the right side of her chest looked different. Today (Monday morning), I noticed the same side of her chest looked larger. I suspect a flare-up brewing but Erin says it doesn’t hurt nor is ...
This week in FOP news
March 20th, 2011
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OK, no grand theme for my blog today. Instead, I’m going to highlight a few different things from the Fibrodysplasia Ossificans Progressiva community this past week.
First, I am sad to report that Mark Smith, an American man with FOP, died a few days ago. Mark Smith was 46 years of age. I never met Mark, but he has been described as a kind and gentle man. Significantly, Mark was a father - Mark and his wife had 3 kids, all of whom also have FOP. Suzanne McCloskey, who does this blog with me, comments that when she first visited the ...
This week, chez nous…
March 13th, 2011
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Wow, this was a super-exciting week! We did tonnes of amazing things, and… Nope, ha ha, that’s not true. In fact, we did nothing special at all this week. Nada. And so, if I’m trying to think of the ways Fibrodysplasia Ossificans Progressiva impacted our world this week, which is, after all, the purpose of this blog, I’ve got to tell you about everyday stuff…
I’ll start with Monday. That evening, I took Miranda to her Sparks meeting (Girl Guides for the age 5-7 crowd). The meeting is just over an hour long, and I waited there until it was done ...
“Mom, can I have more popcorn? WAIT, did the Canucks score??”
March 6th, 2011
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Posted by Karen
On Tuesday evening, we got to go to a VERY cool NHL game of the Vancouver Canucks vs. the Columbus Blue Jackets! The extra-special part was that we got to sit in a luxury box and enjoyed the game, pizza, popcorn, cookies and more all courtesy of the Starlight Foundation.
The Starlight Foundation (www.starlightcanada.org) is a charity which puts on special events for children with serious illnesses and/or progressively disabling conditions, as well as the families of such children. We qualify as a Starlight family because of Miranda's Fibrodysplasia Ossificans Progressiva, and have gone to some terrific events put ...
