Archive for January, 2009
A trip to the dentist
January 30th, 2009
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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 with FOP require dental care, just like everyone else, but have a particular unique concern. The issue is that if a person with FOP stretches her or his jaw too widely, and for too long, this can provoke an FOP flare-up in the cheek ...
FOP video in German
January 30th, 2009
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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 of the connective tissue and support the human body.
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Doing well
January 30th, 2009
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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 in a good mood playing games together.
Erin's potty training has been hit-n-miss. I send her to preschool in a diaper and she feels that she can still go in it. There is no preschool on Fridays and I've put her back in underwear. I am ...
2009 Entertainment Books
January 26th, 2009
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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 store coupons, travel discounts, etc.
Coping emotionally with FOP
January 24th, 2009
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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 other families dealt with FOP on a daily basis, and how they didn't just survive, but live. Everyone we communicated with was so tremendously kind and helpful, and we will be eternally grateful to them for easing us into our new life.
However... I've learned that ...
Good News….Bad News
January 21st, 2009
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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. Sure enough by Wednesday night the left side of her back started to swell. By yesterday the swelling had started to go down and now a little knot of bone is sticking out around her scapula. Erin now complains that her left arm is hurting. I am ...
Household adaptations for FOP
January 21st, 2009
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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 different solutions.
In no particular order, here's a list of some of the changes we've made to our house:
- Our front entry way is paved with very hard ceramic tiles. To minimize the effect of any falls on those tiles, we've covered the entire entry ...
Justin Henke
January 12th, 2009
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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."
A hazardous errand
January 11th, 2009
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Today we took a trip to... wait for it... the supermarket. Believe it or not, I view that as a challenging outing.
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 - when she got too big for the child seat, I had a problem. I had a very strict rule of ALWAYS holding Miranda's hand when she was walking on a hard surface, but I quickly realized that I couldn't push a heavy shopping cart and ...
New flare-ups
January 7th, 2009
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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 sleep are almost always signs that Miranda's about to develop a flare-up...
The first one I found is on Miranda's right lower back, right on top of a bony knob left behind by a previous flare-up. The new swelling makes the old knob stick out a lot ...
