Friends With FOP

Posted by Karen On Friday of this past week, we got a very pleasant surprise. As you may know, we recently did a major fundraising drive for the Canadian FOP Network's "Ride to Cure FOP".  Back in May when we decided to do the event, I sent an e-mail far and wide, asking everyone I could think of if they would donate to our cause.  One person I e-mailed was the director of Miranda's old daycare, the Forest Grove Childcare Centre.  I thought maybe someone at the centre might consider making a modest donation.   Miranda had gone to their centre for about 2 years, ...

Posted by Karen There are many, many frustrating things about Fibrodysplasia Ossificans Progressiva.  Given that our Miranda is only 6 years old, and that her FOP has been symptomatic for only 4 years, we have yet to even experience many of the "joys" (ha ha) of FOP.  One thing we've had all too much experience with, however, is the FOP waiting game... Let's say a person with FOP has a trauma to the body.  It doesn't have to even be a severe trauma.  As a result of said event, the person may, or may not, develop an FOP flare-up.  A flare-up is ...

Posted by Karen Saturday, August 20 marked the beginning of the Canadian FOP Network's "Ride for FOP"!  The goal was to raise money for the Canadian FOP Network to provide funds for research into Fibrodysplasia Ossificans Progressiva.  In Toronto, a team of bicycle riders set out on a trip to Niagara Falls, with a plan to arrive Sunday, August 21 and cap off the event with a picnic for riders, family and supporters.  At the other end of the country, our Vancouver based team did a different version of the Ride...  Our team didn't have *quite* as much ability to ride for long distances, ...

Posted by Karen Earlier this week we returned from the second leg of our 2011 summer vacation.  It was hard to get back to the old routine...  It would be great if summer vacation could last forever!  Toward the end of the trip, Miranda and her brother Owen were both saying they didn't want to go home. After staying for a week with my parents in Calgary, Alberta (which was fabulous fun; see my previous blog), we drove south and then west for 2 days straight to arrive in the town of Seaside, Oregon.  We had rented a vacation property on-line ahead of time, and were happy to discover ...

Posted by Karen Right now our family is on summer vacation...  Yay!  At present we're smack dab in the middle of a week long stay with my family in Calgary, Alberta. We're staying with my mom and dad at their house, and having a really great visit.  My sister has this week off work too, and as her daughter Ella is the same age as Miranda (age 6), the two girls are having a blast running around together, playing, giggling and generally causing mayhem.  ;-)  Miranda and her brother Owen have also been enjoying getting to know their younger cousins William (age ...

We have had a wonderful two days in the Redwood Forest.  Beautiful scenery, crystal clear waters...my inner soul has already been refilled.  Today we drove a class "C" RV through a harrowing drive-through tour through a portion of the Redwood National Forest.  It was an old wagon trail that was quite nerve-wracking to drive at times.  I am glad to say we all made it out alive with minimal damage to the rented RV...still crossing my fingers we'll get our deposit back. :-) We are staying at the Crescent City KOA that is actually quite beautiful.  Initially I wanted us to ...

Since our vacation last year to DisneyWorld (thanks, Make a wish), we've really wanted to take Ein on more vacations while she is able.  So, the family rented a big-ss RV and we're heading down the West Coast to camp in the Redwood Forest! It's already been quite crazy.  We've always joked about how Oregon is the Meth capital of e world, and e really saw it firsthand.  Lots and lots of crazy people. Before we could get the RV we had to put money in the bank, which only stays open til 1:00 and we barely made it there in time.  ...

Posted by Karen This weekend my husband Pete took our boy Owen and went camping with some friends.  Miranda and I stayed at home, and are spending some nice mom-and-daughter time together.  I figured that Dad and Owen shouldn't get all the fun, so decided to try and make this weekend good for Miranda too. We started on Friday by taking the day off work (me) and summer daycamp (her).  In the morning we picked up a rental car, since the boys were taking our sole vehicle on their trip, and then we drove down to Tsawassen to visit with my good friend ...

posted by Suzanne I got to admit, I am feeling a bit beat up.  This might not be the best time to blog but on the other hand it could be the most opportune time to do so. We are in full swing of summer break.  The kids are enjoying staying outside late and we've been fortunate for the mild summer weather.  At the end of the school year, I had several goals for Erin to accomplish during the next two months.  First, I wanted to dig deeper into why she's still struggling with bladder control.  The school has been great by ...

Posted by Karen Ah summertime...  It's been a long time coming here in the lower mainland of BC.  Now that it's finally here, Miranda's been making the most of it. Every day this week Miranda has asked to go swimming.  And she doesn't just ask.  If we don't answer in the affirmative right away, she's RELENTLESS in pressing the point until she gets that "yes".  ;-)  We've mostly let her get her way - I think we were in the pool 5 times this week, and the week's not over yet... I'm OK with this.  We live in a townhouse complex and happen to have ...