Today Miranda had a dentist’s appointment. Our dentist is a terrific guy, who charms Miranda and keeps her calm in the dentist’s chair. All went well, as usual - it seems Miranda has inherited Pete’s and my good teeth.
However, I always feel just a bit apprehensive taking Miranda to the dentist. People [...]
Roger Zum Felde has FOP and was interviewed for a German show. Here’s the segment but it’s all in German with no subtitles.
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From the Domian Archive: Domian Pleasure (2007). The Fibrodysplasia ossificans progressiva (FOP short) - also known as Multiplex Fibrodysplasia ossificans progressiva, myositis ossificans progressiva, or Münchmeyer Syndrome - describes the morbid, progressive ossification [...]
It’s Friday and so far today has been a good day for all the kids. There is no school today and Brennan, Larkin, and the daycare kids are having a good time playing together. Usually Brennan and Larkin only have a few hours (if that) to play with Jaiden and Riley. All four boys are [...]
Melissa and Rob Sprague’s hairdresser is selling the 2009 Entertainment Books and donating the proceeds to Erin. Sales have been slow and she may need to send the books back to the company. If you are interested, please contact me. The books cover the Seattle/Tacoma area and are $25 a piece. They are loaded with [...]
In the early days of Miranda’s diagnosis with FOP, Pete and I tried to do everything we could to learn about it and get to know (via the Internet) people in the FOP community. We NEEDED to do that… It was the only way we could try to adapt. We just had to learn how [...]
It’s been a while since I provided an update on Erin. Bad news first…she just finished with a horrible flare up. This one didn’t last long but it was very painful.  I kept her home from preschool last Tuesday b/c she was so cranky. I still forget to connect her crankiness to an on coming flare up. [...]
Just for the heck of it, I thought I’d write today about some of the adaptations we’ve made to our household to make it safer and easier to manage for Miranda. Fortunately Miranda doesn’t at this point require a wheelchair or scooter to get around, but nevertheless she does have some issues which required [...]
Justin Henke is an active eight year old boy who has FOP.  His story was aired on public radio over the weekend but here is the text version - Justin Henke on “Weekend America.”
Today we took a trip to… wait for it… the supermarket. Believe it or not, I view that as a challenging outing.Â
When Miranda was small, ie, less than 30 lbs, it was no problem to go grocery shopping. I’d just pop her in the child seat in the shopping cart and away I’d go. But - [...]
In the past 2 days, I’ve found 2 new flare-ups on Miranda’s back. I should have known it was going to happen, because a couple of nights ago she had a very restless, fidgety sleep (we keep a baby monitor in her bedroom, so I can hear this). Tossing and turning and whimpering in her [...]
