Archive for August, 2009
A trip to the fair
August 30th, 2009
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Like most cities, Vancouver has a late summer/early fall fair which happens for a couple of weeks each year. It's called the Pacific National Exhibition - more commonly known as the "PNE".
Pete and I haven't been to the PNE since before the kids were born. Owen was too young for a while, and then Miranda was born and she was too young, and then we stayed away for a couple of years after Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva. This year, however, we decided it was time to introduce our kids to the PNE... I'm happy (and relieved, ha ha) ...
Employed again
August 28th, 2009
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It's official...Alan accepted a job yesterday. In today's job market, he had to take a position that is several steps back from what he has done for the past several years. The position doesn't warrant the type of salary he used to bring in either. BUT...he doesn't have to commute too far (actually he'll be going against traffic both ways), and most importantly our new medical coverage will go into affect September 1st. We had to take the boys off all but one type of medication for their ADD/ADHD and Autism symptoms. School is their ...
A fundraiser through PartyLite
August 25th, 2009
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In this economy, fundraising has been tough for the IFOPA. I wanted to do something for the IFOPA but with our financial situation, we are unable to do much. However, I have a wonderful neighbor who is a PartyLite consultant. She has offered to donate her commission to IFOPA for all sales purchased in Erin's name. I will be hosting a small gathering at my house for our local supporters on Friday, September 11th at 7PM; however many of our supporters are across the country and globe. If you would like to help us out, you can order Partylite online ...
I’m Back
August 24th, 2009
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Yes, it has been quite a while since I posted an update on Erin. The old saying, "no news is good news" rings true in our home. Erin has had a great summer and has been flare-up free for almost three months. She did have a fall or two but nothing serious. Even I have reduced my anxiety over her tumbles. Erin still panics when she isn't stable on her feet but she's getting better with catching herself.
I can't remember if I mentioned this but Alan and the boys fixed up the backyard in early June. We removed what sod ...
Starlight Foundation
August 24th, 2009
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Last August Alan came across a media press release about Starlight Foundation in Los Angeles, CA. Alan contacted Starlight and they directed us to their Seattle chapter. Starlight does many things for seriously ill children. From sponsoring game consoles at childrens hospitals to sponsoring family events, their goal is to make a difference in the lives of sick children. Erin's application was accepted in August/September 2008 and most of their events had past. This summer we have been able to take full advantage of the program. As spring approached, I began receiving emails about their Great Escapes events. Here is ...
Various FOP bits and pieces
August 23rd, 2009
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This week I couldn't come up with a unified theme... So, I'm going to talk about a bunch of things going on recently in the Fibrodysplasia Ossificans Progressiva community.
First, in our little corner of the FOP world - a new flare-up. I keep hoping Miranda will enter one of those multi-year "remission"-like phases I've heard about, where the person has no flare-ups for a very long time, but so far 3 months has been her longest time flare-up free. Sigh. Anyway, earlier this week Miranda commented that her tummy was sore. She mentioned this a couple of days in a ...
Summer vacation 2009! …and not much FOP
August 18th, 2009
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We just returned from our summer vacation. It was GREAT! We had a wonderful time, and as the title of this blog indicates, Fibrodysplasia Ossificans Progressiva didn't come on vacation with us. ;-)
OK, let me be more accurate - during the two weeks we were away, Miranda didn't have any FOP flare-ups. That's a better way to put it, since precautions around FOP, at least, are an ever-present part of our lives. That's just a simple fact, and we're kind of used to it by now.
We left for our vacation on Sunday, August 2. First up was a trip to Calgary ...
Birth of the Canadian FOP Network
August 1st, 2009
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In May of 2008, I was working at home one day when we received a letter from the International FOP Association. I read the enclosed letter, and was very interested to learn that a family in London, Ontario was trying to rally Canadian families to form a Canadian FOP organization. Fast forward to the present, 15 months later, and during the last few days I've been doing paperwork connected to the group we created. Naturally, this has made me think a lot about the Canadian FOP Network...
When we received the letter, I was delighted. We had been part of the Fibrodysplasia ...
