Friends With FOP

Posted by Karen I'M BAA-AACK!  And happy to be blogging again, after 3 weeks off to deal with a...  time-consuming project I had to do through work (end point was Friday Dec 16).  The early part of December was a tough slog for me, and now I'm ready to relax! However, the past month wasn't a complete washout in terms of enjoying the holiday spirit with my kids and husband - a couple of weeks ago, I took a break and we all went to the "Starlight Stars on Ice" kids' holiday party.  I've written about the Starlight Foundation before, as has my ...

Posted by Karen I recently made the acquaintance (via Internet, but still) of a woman whose beautiful little girl, Addi, was recently diagnosed with Fibrodysplasia Ossificans Progressiva.  While going through all the strong and difficult times that entails, my new friend, Shannon, also started a blog about her family's journey with FOP.  Recently, Shannon and her family had the chance to meet Dr. Kaplan, FOP doctor extraordinaire.  Today I want to share with you Shannon's blog about that meeting.  Check it out at: http://fopjourney.blogspot.com/2011_11_01_archive.html I'm so glad to see that Shannon found the meeting helpful and inspiring.  From my own perspective, one thing which is so great about Dr. ...

Posted by Karen Why can't getting a flu shot EVER be a simple thing for Miranda? This is the third year in a row that we've experienced drama and/or confusion and/or delays in getting a simple flu shot for Miss M.  I have to say, this is getting kind of old... [caption id="attachment_1507" align="alignnone" width="244" caption=""Waahhhh! I don't want a flu shot!""][/caption] Before I tell you this year's story, though, a bit of background.  Of course, nobody wants to get the flu - but for people who have Fibrodsyplasia Ossificans Progressiva (FOP), as my daughter Miranda does, there's an extra reason not to get ...

posted by Suzanne I should be sad today.  Why?  Because I have been kind of sad for awhile now. But I am not today. Of all days to feel happy, the beautiful fall weather here in Seattle has turned dark and rainy.  Instead of dry leaves littering our lawns and street, we now now have wet and soggy vegetation everywhere.  Erin loves to play outside with her friends and can't today because of the storm rolling through. Lately I find myself having more sad days than happy days.  This morning I realized that I have been sad for a very long time.  I have ...

Posted by Karen Age 18 months to 3 years is a really fun and exciting time in a child's life.  That's typically when a kid starts talking and building her or his language skills.  I have so many great memories of my son when he was that age...  I remember his funny pronunciations of some words, quirky expressions he had, the first things which caught his attention and the things he wanted to talk about.  Those are some of my favourite things to remember, and I have a lot of fun telling my kids stories about those times (my son, Owen, is now ...

Posted by Karen When my daughter Miranda was first diagnosed 4.5 years ago with Fibrodysplasia Ossificans Progressiva, one of the (very many) concerns I had was about her ability to enjoy life.  How could Miranda ever be a happy child with this horrible genetic monster hanging over her shoulder and affecting her every move?  In my extreme despair, I pictured a gloomy life, with Miranda being in constant pain and watching other children do everything she couldn't. Thank goodness the reality is nothing like I had feared. As I've blogged about many times before, Miranda is a happy, fun-loving girl who does lots of ...

Posted by Karen A few days ago, I got in my car to drive to an appointment.  Just before heading out, I checked my Blackberry for e-mails, and I saw a message from the International FOP Association (IFOPA) with a title that started my skin tingling: "Genetic Technology Breakthrough".  I hurriedly clicked on it, and learned that our beloved scientists at UPenn have figured out how to STOP Fibrodysplasia Ossificans Progressiva. (!!!!!) Even before I had a chance to read any further, I knew this was going to be a big, BIG deal.  This appeared to be probably the most important step to date in FOP research.  I ...

Posted by Karen Marie Hallbert lives in Sweden with her husband and 2 children.  Her younger son, Hugo, is age 13 and has Fibrodysplasia Ossificans Progressiva.  Marie has done so very, VERY much to help families dealing with FOP, and I'm privileged to say that she's my friend.  One of the many parents she's supported over the years gave her the name which is the title of this blog.  I really want to tell you about Marie, and especially her latest accomplishment... First, a bit of background.  Marie's son Hugo was diagnosed with FOP at almost exactly the same age as my ...

Posted by Karen It's a standard thing with kids that as time goes by, they have more skills, more strengths and more abilities.  A 2 year old probably won't go down the twisty slide at the playground, but by age 3 is raring to try it.  The child's parent watches and provides guidance, sometimes stopping the little one from doing things too risky and other times encouraging him or her to try new things. The situation is the same when the child has Fibrodysplasia Ossificans Progressiva, but the balance point between appropriate activity and too risky isn't the same as for a ...

Posted by Karen My daughter Miranda has Fibrodysplasia Ossificans Progressiva (FOP), and I've blogged about that from many different angles.  Dealing with FOP is a significant  part of  life with Miranda.  However, it's not the only part.  It's not even the most important part. Once, many moons ago, I blogged about the kid behind the FOP.  That was a while ago, though, so I thought it would  be fun to do that again, and tell you 12 random things about Miranda.  Things that AREN'T about FOP.  In no particular order... 1. When Miranda wakes up every morning, almost the first thing she asks me ...