My kids love their grandparents…  Love love love ‘em.  Lucky for Miranda and her brother Owen, they have a full set of four.

Grandparents can be a terrific part of any child’s life.  However, I think that when the child has a disorder like Fibrodysplasia Ossificans Progressiva, having gramma and gramps around is all the more meaningful.  From the parents’ point of view, having one’s own parents for support is invaluable, for both emotional boostering and also practical help.  From the point of view of the child with FOP, a grandparent can be a person who provides some silly fun, and a distraction from every day limitations.  That means alot to our family, but I know we’re not the only ones…  I’m “Facebook Friends” with Erin Kate’s grandma and another FOP child’s grandma from overseas, and I know of others as well who are much involved in their grandchildren’s lives.

In our case, Miranda has two grandparents who live here in Vancouver, and two who live a day’s drive away, in Calgary.  The Vancouver grandparents are Farmor (Danish for grandma, as this lovely lady immigrated here from Denmark as a young adult) and Grandpa Carl.  Lucky Miranda gets to spend every Monday with Farmor and Grandpa while my husband and I are working.  Farmor is very creative, and gets Miranda involved in all sorts of interesting arts and crafts (which is great, since neither Pete nor I are that way).  Farmor and Grandpa Carl also like to take Miranda for walks in the woods at Pacific Spirit Park and tell her all about the birds, animals and plants they see.   Miranda definitely enjoys her days with her Vancouver grandparents…  No gripes ever about going to their house!

Miranda and her brother get to see their other grandparents, my parents, less often because they live in Calgary.  However, when they do see them, they really make the most of it.  The Calgary set are Baba (Ukrainian for grandma, in honour of my mom’s roots) and Grandpa Mal.  We spend a week each summer at their house, and typically they come out here together for a few days in the late spring or early fall, plus each will usually come out on his or her own for a few days once a year.  Baba and Grandpa Mal are great for fun and laughs whenever we get together.  Also, Grandpa Mal has dived head first into the FOP community, and is now on the board of directors of the International FOP Association.  That’s really fab as far as we’re concerned, and some other time I’ll probably tell you some more detail about stuff he’s done supporting us on our journey with FOP.

Right now, though, I’m going to tell you about Baba, who’s visiting us for an extended long weekend.  Years ago, my mom was a social worker.  She really valued her work with the disadvantaged in society.  She left her job when she had kids, but she raised my sister and brother and me to be aware of issues around poverty, race and (dis)ability.  My mom is a deeply compassionate and caring person who has always tried to advocate for  people who face challenges in life.  For example, she has volunteered at the Calgary Food Bank for many years, and she values this work.  When our Miranda was diagnosed with FOP almost 3 years ago, my mom was put to the test - would she withdraw in fear, or step up to the plate and be all that she could be to her special granddaughter? 

It should be no surprise that Miranda’s Baba has been all we could have hoped for.  She was initially just as upset about FOP as we were, but pretty quickly she put her caring credentials where her mouth is and tried to learn as much as she could about FOP.  Baba has been interested in finding out about deveopments in FOP research, and she and my dad have been instrumental in spreading the word about fundraising far and wide and using their extensive connections (trivia - my mom has 13 siblings!) to raise money for the cause.  Additionally, Baba has tried to get to know as many people in the FOP community as she can through the medium of Facebook.  It really has been invaluable for us to know that she, as well as Grandpa Mal, Farmor and Grandpa Carl, are so positive about being involved in our journey with FOP. 

On a more down-to-earth level, Baba delights in playing with Miranda and encouraging her to have lots of fun doing activities she enjoys, such as boardgames and making up stories and scenarios about her animal toys.  This time around, Miranda and I picked up Baba at the airport on Friday (Owen was at floor hockey), and the kids have been having a blast with her ever since.  Yesterday we had a wonderful day - it was sunny and warm, and we spent almost the whole day outside.  In the morning, we took the kids for a run around at a local park, where we all had fun playing hide and seek.  In the afternoon, my mom and I took the kids to Maplewood Farm in North Vancouver, where kids get to walk around and see farm animals and even pet some of them (rabbits and goats).  Then, last night Baba treated us all to dinner at Fat Burger (yum yum).  After dinner and back at our house, Baba sat patiently in her chair while Miranda and Owen covered her from head to toe in plastic animals…

(a picture is worth a thousand words, ha ha)

Baba will be here until Tuesday this coming week, at which point we’ll be sad to say goodbye.  Miranda is lucky to have such a wonderful grandmother.

Fibrodysplasia Ossificans Progressiva, which affects Miranda and her friend Erin Kate, has a prevalence of about 1 in 1.6 million people.  There are just over 700 people known to have FOP worldwide, with estimates of about 3500 total (in less developed countries, most aren’t diagnosed).  With so few sufferers, FOP is considered an “ultra-rare” disorder - one of the rarest of the rare.

A rare disorder like FOP barely registers on the public consciousness, if at all.  Families of those affected can’t, and generally don’t, expect widespread levels of concern about our disease.  FOP, however, is hardly the only medical condition in this category.  There are dozens upon dozens of other rare disorders, each in the same boat.  In fact, according to the Canadian Orgazation for Rare Disorders, or “CORD”, 1 in 12 Canadians has a rare disorder, which is a condition with no more than 1 in 2,000 sufferers.  Estimates in the United States and Europe are about 1 in 10, according to the American organization the National Institutes of Health.  Think about that number - about 10% of the population has  rare disorder.  There are at least 7,000 rare disorders.  FOP, Neurofibromatosis, Epidermolysis Bullosa, Pompe Disease, CFC Syndrome, Paget’s Disease, Progressive Osseous Heteroplasia and Cri Du Chat are just a few examples.

At some point along the line, a bunch of smart folks realized that if people with rare disorders of many types band together, they can have far more influence on health issues and research than if we all act separately.  The result was groups such as CORD, and in the United States, NORD (National Organization for Rare Disorders).  Here in British Columbia, we have the Rare Disease Foundation, which seeks to promote research into rare diseases.

In an effort to bring more public awareness of issues surrounding rare diseases, CORD and NORD collaborate with other international rare disease groups in taking part in Rare Disease Day.  In 2010, Rare Disease Day is today, February 28, 2010!

As you go about your day, please give a thought to issues affecting people with rare disorders, including the following:

- Most rare diseases have no cure, or even any effective medical treatments.

- Many children with rare diseases are misdiagnosed, often leading to innappropriate medical treatment (this is especially a problem for FOP).

- It’s hard to interest scientists in developing treatments for rare disorders because of the low level of financial incentive (ie, few sufferers means few people to prescribe a drug for).

- Even when treatments are identified, they may be prohibitively expensive.

On Rare Disease Day, there will be scientific presentations, rallies, discussion groups and conferences in various parts of the world, all designed to draw attention to issues of importance concerning rare disorders.  If you want to learn more about Rare Disease Day 2010, or about rare disorders in general, go to www.rarediseaseday.org, www.rarediseases.org,  www.raredisorders.ca or www.rarediseasefoundation.org.

For Miranda and Erin Kate, as well as thousands of children and adults with FOP and other rare disorders, Rare Disease Day is all about hope for the future…

As you may know, our family lives in a suburb city of Vancouver, Canada.  And, as you may also know, there’s a teensy little event going on right now in Vancouver - the 2010 Winter Olympic Games.  Okay…  It’s actually not so teensy; it’s rather a very big whopping deal in our fair city!  Vancouver is completely consumed by the Olympics at the moment, and our family has gotten right into the thick of it.

Everything Olympic-related these days is glutted with people.  Huge, unbelievable crowds…  Doesn’t sound so very good for a family with a 5 year old who has Fibrodysplasia Ossificans Progressiva, does it?  Huge crowds pose pushing, bumping and tripping hazards.  However, an excellent way to let FOP get the best of you and diminish quality of life is to crumble in the face of all risks and choose not to do things.  And so, our family has done a bunch of Olympic stuff.

It all started, of course, with the opening ceremonies.  No, we didn’t see those live, just watched on TV.  However - 2 days later, on Sunday of last weekend, we went to an Olympic women’s hockey game, which is the one and only event we managed to get tickets for.  We had to arrive at the game almost two hours early, as recommended by the Olympic authorites, and had to take the bus onto the UBC campus where the game was held.

Upon arrival on campus for the game, we exited our bus and tried to figure out where to go next.  We thought about walking to the venue, but it was close to a kilometre away, and we didn’t think a walk like that would be a good start to our Miranda’s day.  Fortunately, they had an “accessibility shuttle” for people with disabilities, and we were able to ride it from the bus stop to the Thunderbird Arena.  Next we had to go through security.  I was carrying with us a backpack in which I had our ever-present instant cold packs (in case of Miranda falling or otherwise hurting herself), along with a first-aid kit, and I wondered if I’d have to explain that gear to security or if they’d confiscate the first aid kit because it contains scissors.  However, none of that happened and we sailed through.  

The last bit before the game itself was a lengthy wait in the crowd in front of the arena.  We waited there about an hour.  To my surprise, Miranda (and her brother as well) handled the wait very well and didn’t gripe.  Also, she didn’t get jostled or pushed, which is of course good.  Next - the game!  We saw the Finnish women’s team play the Russians.  As Russia is a traditional hockey rival of Canada, we cheered for the Finns…  And Finland won!  Miranda and Owen were delighted.  We had very good seats, too, as we were right near one of the goal creases and so could see the goals happening up close.

Pete, Owen and Miranda in our seats at the hockey game. Note O & M's Olympic hockey jerseys.

During the game we ate lots of concession food, because they don’t let you bring your own food to Olympic venues.  This was the part at which we had our one FOP-related glitch…  The games have the goal of being very “green” (ie, environmentally responsible), so you cannot get drinking straws for any beverages you purchase.  I thought we had been well-prepared for our event, but we didn’t predict a lack of straws!  Straws are a necessity for Miranda to drink independently, because she can’t get either of her arms up high enough to tip the drink container at her mouth.  And so, I had to hold Miranda’s milk for her to drink it.  Minor inconvenience, true, but I did wish I had thought to bring a straw…

The rest of the week we spent glued to the television watching various events.  Miranda had lots of questions about everything.  She is particularly interested in skating, which sadly she can’t do herself - that’s one thing which we feel is just too risky for her to try.  However, at one point she discovered that the Paralympic Games (which follow the Olympics) have sledge hockey games.  Miranda announced that she could do sledge hockey if she couldn’t skate, and she was happy with this conclusion.  I didn’t have the heart to tell her that her arms wouldn’t be able to manage that sport…  But no matter, as this was a passing fancy of hers and she’ll forget all about it after the Olympics.

Anyway, though we didn’t go to any other events, Pete and I decided to take the kids downtown yesterday to see whatever free stuff we could see and absorb some Olympic atmosphere.  We had to again take public transit - this time it was via Skytrain.  Though we arrived fairly early in the day, around 10:30 AM, there were already hordes and hordes of people in the downtown core.  Of course, this is again a tripping/falling/jostling risk for Miranda.  But still, we gave it our best shot.

First we went to see the Olympic cauldron.  We got close enough to snap a photo, but weren’t interested in standing in line for an hour to get to the “unobstructed” view, hence ours is through the infamous chain link fence (and you can’t even see the lit flame in our pic, but oh well). 

Our kids by the cauldron.

Pretty soon after that we decided to get an early lunch because we happened to be close to the “Japadog” stand - if you haven’t heard of this, it’s a hot dog with teriyaki-mayo sauce and seaweed shreds.  Interesting…  (the kids just had plain dogs though).  Then, we bravely set forth to walk onto Granville Street, the heart of the Olympic madness.

On Granville I swear it was wall-to-wall people.  Pretty quickly we gave up the idea of actually trying to get into any pavilions, as the lines were SO long.  We meandered along the street and just checked out the free stuff there was to see there, such as street performers and a forest made of trees with kids’ artwork as the leaves (I think this forest had an actual name, but I missed it).

In the Olympic forest on Granville Street.

We rounded out our day by walking over to the Robson Square skating rink for a look around.  When we were there, we caught a piece of the “Olympic Mascots on Ice” show, which delighted Miranda, who LOVES her Olympic Miga toy and carries it everywhere. 

We went home mid-afternoon, and I was satisfied that we had enjoyed whatever there was to do which was easily accessible.  Miranda had really enjoyed it, as evidenced by the fact that she asked when we could go back downtown and “see more stuff” (Owen on the other hand was a limp noodle, having been exhausted by the crowds). 

And so, having made it through ginormous loads of people without any FOP-related incidents, we made it home safely…  And then a couple of hours later, Miranda tripped on something and fell flat on the floor, causing much howling and tears and necessitating a cold pack to the head.  The Olympics didn’t cause any problems, but she fell in her own home.  It figures, sigh.  But, that’s life with FOP, and we’re used to it.

(PS - I think her head’s OK.  Maybe we escaped a big bump this time around.)

A few weeks ago I blogged about trying to find some good group-type activities for my gal Miranda, who has Fibrodysplasia Ossificans Progressiva.  I’m glad to say we got some stuff sorted out…

I believe I mentioned that I signed Miranda up to begin “Kindercooking”.  This is a class for 3 to 5 year old kids, and they go once per week - every Friday from 12:30 PM to 2:30 PM.  The class is at a community centre.  At Kindercooking, the kids first get about an hour of play/art time, where they do typical preschool sorts of things, and then for the second hour, they prepare a simple food item and eat it.

When I first signed Miranda up, I made the program coordinator generally aware of M’s specific needs, and she was confident all would work out.  I was a tiny bit nervous before the program started, because Miranda would be attending WITHOUT a staff person dedicated to her assistance (you just can’t get that for a thing like this), but was somewhat reassured by the fact there are 2 teachers and only 8 kids.  Anyway, Miranda has now attended twice…  And I’m glad to say that all has gone very well!

On the first Kindercooking day, I brought Miranda to the designated room, and told the teachers I’d be outside waiting in the lobby while the class was going.  It turns out they did arrange for one of the two teachers to be more focused on Miranda during the playtime (though not to the total exclusion of the other kids), so that was reassuring.  Anyway, I kissed my gal, held my breath, and walked out of the class.

For the next two hours, I sat and read my book and drank coffee (wow, silence and time to myself! unheard of).  Every now and again I peeked into the room, and all seemed to be going well.  Finally, when the class ended, I went in and saw Miranda eating a little pizza.  She was VERY excited - “Mommy, I made it all by myself!!”  It was soooo nice to see her enjoying herself and doing well.

The second class went just fine as well.  Since that one took place on Friday, just before Valentine’s Day, the kids made cupcakes and decorated them.  Let me tell you, that particular cooking project was RIGHT up Miranda’s alley - cupcakes, icing, candies, it’s all good. 

Here's Miranda in her red Valentine's dress (nb - red for Canada too, on the first day of the Olympics!), holding some of the art she did at Kindercooking.

I’d have to say Kindercooking has been a success.

In recent days, I’ve also been thinking about something a little more adventurous for Miranda, ie. dancing.  I solicited some opinions, and came to the conclusion that if she was going to try dancing, probably tap would be the best option - there’s not as much leaping about as in ballet, and more footwork as opposed to arm movements (which M cannot do as a result of FOP fone in her shoulders and elbows).  I started looking into it, and found that if we give this a try, we’ll probably have to wait until the fall to begin.  Which is fine. 

And so, I had just put dancing on the back burner when I received a newsletter from the “Centre for Ability”, a local not for profit agency which provides services to special needs kids.  There was a story about a program called “Wee Dance”, where 3 to 5 year old kids do simple dance activites under the supervision of physiotherapists.

I had known of Wee Dance before, but could never get Miranda in to it because it was held during my working hours.  Still, I decided to call the Centre and find out more, because if they ever held the program after 3 PM, or on Fridays, we’d be able to attend.  It turned out that that’s exactly what happened this time around - it’s booked for 4 PM on Tuesdays, beginning in March.  Miranda had priority to get into the class, as she’s going to begin kindergarten this fall.  And so, I signed her up.

Miranda was very excited when I told her she was going to start dance class.  She decided that she will have to wear a “dancing outfit” (ie, leotard) with a tutu and ballet slippers.  I’m sure I’ll humour her on that.  :-)  If all goes well with Wee Dance, we’ll try tap in a few months.  I think this class will be a really good way of finding out if dancing could be a reality for Miranda, so I’m glad we have this opportunity.

M wearing yet another dress (her fave thing these days), dreaming about dancing.

It’s a fun time when your child starts to venture out and try some different things.  No way are we going to let FOP get in the way of that…

Of course, the purpose of this blog is to discuss all manner of stuff connected to my daughter Miranda and her Fibrodysplasia Ossificans Progressiva.  As such, I usually only mention my son, Owen, in passing.  I think it’s time I rectify that a bit and tell you about Owen, and how FOP affects his world.

Owen was born on January 28, 2002, which means he just turned 8 years old.  Owen is tall for his age, blond like both his mom and dad at that age, and his worst health issue is a lazy eye inherited from his dad which requires him to wear corrective glasses.  He loves to watch NHL games and play floor hockey, collects hockey cards, is developing into a solid reader, enjoys board games and wrestles with our cat.  Owen has a friendly and outgoing disposition, and not much troubles him in life.  In addition to all that, he is a terrific brother to his sister.

Here's Owen on his 8th birthday, just before his skating lesson.

I think Owen’s reaction to FOP has been the healthiest of anyone in our family.  The thing is, Owen was 5 years old when Miranda’s FOP was diagnosed, so he has no memories of her from before.  Because of that, he’s known as long as he can remember that Miranda has FOP and has to be extra careful not to hurt herself, that she can’t move her back and arms the way he can, and that she can’t do certain activities that he can do (such as ice skating).  But, as far as he seems to be concerned, those are just features of Miranda on a par with her brown hair and the fact she likes Bugs Bunny cartoons.  The result is that he treats his sister in exactly the way I would have hoped - which is to say that except when it specifically needs to be an issue, he doesn’t think about Miranda’s FOP.

Fortunately for me and my husband Pete, Owen and Miranda seem to have a very health sibling relationship.  They play games together, trade hockey cards (that’s one of those “monkey see, monkey do” things), laugh at the same stories, bicker, self-righteously tell on each other for minor infractions of household rules, think poop and barf jokes are hysterical, and bargain over playing with “girl” vs. “boy” toys together.  What more could any kid want in a brother?  As could be expected, and in the time-honoured tradition of younger sisters, Miranda idolizes her big brother Owen.  NOBODY is cooler than Owen where Miranda is concerned.

 As Owen and Miranda grow older, I think he’ll always be a great support for her.  That being said, Pete and I have to continue to be vigilant and ensure that Owen never has occasion to feel resentful about limitations placed on our family by FOP.  Just like any other kid, he should get to play sports, do things with friends and have adventures, even when the activities are things Miranda maybe can’t do.  Right now, for instance, Owen is in skating lessons though that’s something we just can’t let Miranda do.  Stopping Owen from doing what his friends are doing would probably be the best way to foster frustration, which we definitely don’t want.

I’ve heard some great stories about the siblings of people with FOP.  One that I like the best is about two brothers when the second, who has FOP, joined his older brother at college.  Their mother knew that without being asked, the older brother would keep an eye out for the younger and help him on occasion when he needed it.  She worried that her firstborn son would feel imposed upon, and she told him she was sorry he had to feel he was shouldering extra responsibility.  According to the mother, her older son told her not to even think about it, because it was no burden to him - he loved his brother and wanted, of his own accord, to help his brother if or when he needed the help.  As the song goes, “He ain’t heavy, he’s my brother.”  :-)  I hope Owen will be like the brother in this story.  I think he will.

Miranda and Owen at Pete's office kids' Christmas party.

This week we had a couple of experiences which got me thinking about the approach we take to life with Fibrodysplasia Ossificans Progressiva.

Let me start by saying that I’m pretty content with “where we are” in terms of having accepted FOP.  Neither I nor any of my family are depressive or downcast by nature, and so we didn’t spend forever wallowing in sadness after our Miranda’s diagnosis almost 3 years ago.  Yes, we struggled with it, and had to work stuff through, but after several months we got to the point where we could happily carry on with life.  Over the last couple of years or so, our approach has been healthy, I think…  Speaking for Pete and I, we mostly focus on Miranda as a whole child, and FOP as only one facet of her life.  We laugh at Miranda’s hijinks, play with her, take her to do various activities, get her to do chores, plan for the beginning of school, dream about her future and do all the things any parent should for their child. 

Here's my fun-loving gal having a laugh at our kitty sitting on the bathroom counter.

Learning about the amazing community of people with FOP in the world has helped us get to this place.  There are people with FOP who are graduate and medical students, who work and run businesses, who play musical instruments, who raise awareness of and fundraise for FOP, who are married and parent children, who are artists, and, most important of all, who lead happy and fulfilling lives.  All of those people have shown us that even if an effective treatment for FOP is NEVER developed during Miranda’s lifetime, Miranda can still have a terrific life and FOP doesn’t have to prevent that.

And so, turning back now to the two events of this week…  The first was an appointment with a specialist following Miranda’s case.  This doctor isn’t one of her primary caregivers; rather, “Dr. E” just sees Miranda once per year to follow up and see how she’s doing.  First, we had to wait quite a while for Dr. E to arrive.  I’m not critical of the doctor for that, as I appreciate that physicians often have delays they can’t predict or control.  However, let’s just say that it contributed to us feeling kind of impatient by the time the appointment got underway.  Anyway, first, Dr. E had a medical student come in (I think BC Children’s is a teaching hospital, as we see this often).  The student knew nothing about FOP, so I explained it.  The student was quite amazed, but thoughtful and respectful.  That part was OK.  But then, in came Dr. E with another student in tow.  Dr. E didn’t bother to examine Miranda, and instead just told the students in dark and dire terms about all the negative consequences of FOP, and then swept out and left.

A lot of things bothered me about this appointment.  First, why didn’t Dr. E examine Miranda?  Isn’t the whole point of us coming for Dr. E to become familiar with Miranda’s physical issues as she grows older?  Second, I was getting pretty nervous about what Dr. E was saying around Miranda, who, at age 5, can understand a lot more than she did at age 2.  We are open and honest with Miranda about her FOP, but in an age-apropriate and “need to know” kind of way…  I didn’t appreciate how Dr. E blathered on, unconcernedly, about all kinds of stuff that Miranda didn’t need to hear and could just about understand.  Third, it bothered me a lot that Dr. E seemed to have such a negative view of everything, and offered not a word of encouragement or support.

OK, OK, the critics among you might well point out that Dr. E isn’t a social worker or counsellor whose job it is to make people feel better; Dr. E’s job is to render medical treatment where possible and train students to do the same.  I get that, really I do.  However, I believe that a big part of being a doctor is showing a positive “bedside manner” and encouraging patients to do as well as they can  Dr. E did NOT do that, and after Dr. E’s talk to these students, I’m guessing that if they ever encounter another FOP patient, they’re going to be pretty negative and pessimistic.

Aside - I did my best to help these students at least get an accurate learning experience out of the exercise.  I took it upon myself to tell them about the characteristic FOP toes and how to recognize FOP (Dr. E did not do this).  I also told them about the informative IFOPA website.  If nothing else, the students are now aware of the important signs and an information source…

Anyway, by the time we left this appointment, I was feeling pretty down and negative about stuff.  More than I’ve been for a long, long time.  On our way home, I had to sit and consciously think through the whole thing, and forcibly “re-orient” my thought processes back to feeling positive. 

So then, a couple of days later I had an experience which was quite diferent.  I finished work a bit early to have a chance to run by the principal’s office at the school where my Owen (age eight) is currently a student and where Miranda will begin kindergarten in the fall.  I wanted to make an appointment for another day to talk about Miranda and the special requiements she’ll have when she starts school.  I thought I’d just book the appointment and then go pick up the kids, but as it happened, the principal was right there and asked me to come in and talk to her on the spot.  And so, I did.  The principal had seen Miranda before, but had no knowledge of her issues, so I explained the basics of FOP.  I REALLY appreciated her reaction.  She just listened, wrote some notes, paused, and then said, thoughtfully, “Hmm, OK, so I guess she’ll need a one-to-one educational assistant.  Here’s what we need to do to get that organized…”  She was very matter of fact about the whole thing, and didn’t blink an eyelash about any of it.  It was, I think, a very helpful and healthy approach.  I came away feeling like she cared about making sure Miranda gets the assistance she needs to thrive at school, just like any other child.

One week, two very different experiences.  Can you guess which of these two professionals I liked better? 

Kids with Fibrodysplasia Ossificans Progressiva have a variety of different experiences with school.  A lot may depend on the age of the child when FOP became symptomatic and was diagnosed (hopefully soon afterward, but it doesn’t always work out that way - a whole other story). 

If the child is diagnosed with FOP at a young age (ie, pre-school) as Miranda was, then parents need to put some thought into what level of assistance, if any, the child may need to attend school.  Of course, for home schoolers the point is moot, but for a child attending a public or private school, there are obviously risks to safety for a child with FOP.  Think of all the bumps, jostles and falls possible when kids go from class to class, or at recess, or lunch, or phys ed…

Many kids with FOP attend school with the help of an “educational assistant”, or EA.  As I understand it, some EAs literally spend the whole school day with the child, making sure everything is safe and accessible.  EAs may need to help with certain things, such as unloading books from backpacks, or trips to the bathroom.  Some kids have the same EA for multiple years in a row.

Other young children with FOP don’t have EAs, or at least not full-time.  I’ve known of a number of young kids with FOP who went through school with just a little bit of extra supervision at recess, lunch and phys ed time.  Of course, in the “olden days”, which for FOP means anything earlier than, say, 1990 ;-), having an EA wasn’t even an option for most kids with FOP, and they just took their chances…

Then there are kids with FOP who don’t become symptomatic until they are school age, or even as teenagers.  If, say, a 15 year old in grade 10 has his or her first ever FOP flare-up, the teen will have completed almost all childhood schooling without any special arrangements, and probably will just finish it off without any extra help.  On the other hand, if FOP first rears it’s ugly head at age 9 or 10, I’d guess that’s kind of a grey area in terms of need for assistance…

Anyway, back to our story.   This week I went to a kindergarten meeting put on by the “Centre for Ability”, an agency which provides physio, OT an other services to preschool age kids with disabilities or other health concerns.  At the meeting, we learned all about the local deadlines, procedures, assessments, assistance, etc around getting special needs kids ready to start kindergarten.  Now I (hopefully, ha ha) know all I need to to ensure a smooth beginning to Miranda’s schooling.

So what level of help will Miranda require?  I think that when she’s doing her actual school work, she won’t need much help.  However, I am nervous about her travelling through school hallways, and especially nervous about phys ed class and during breaks like lunch and recess.  Given the rigidity in Miranda’s spine, and her lack of shoulder movement, she simply can’t catch herself and prevent falls nearly as well as the average child, and so she is prone to falling more often.  I don’t like to even think about that happening on the asphalt covered area in front of her school…  Yikes.

I figure what will most likely happen, knowing what I do about the system here, is that Miranda will probably end up sharing an EA in kindergarten with another special needs kid, most likely one who needs help in the classroom but not so much when not actually learning the “three Rs”.  I think that should probably work well.

Miranda is very excited about kindergarten.  As it happens, our school is one of a number in the province approved to start full- day kindergarten in 2010, so she’ll be diving right in to regular length school days.  I’m fine with that, as I know she’ll be ready for it.  She already does those hours 4 days per week as it is.  September 2010, here we come!

Here’s a recent pic of my gal just as she was turning 5, and ready to take on the world…

As I told Miranda the other day, she is now “such a big, big girl!”  Preschoolers love to hear that stuff…

Friday, January 15 was Miranda’s fifth birthday.  Five years ago Friday, I woke up and wondered, “Geez, this kid is now 6 days late.  Maybe today is the day??”  That evening, I laid down to sleep with a new, sweet baby girl beside me, and she was perfect.

I remember that the next day, as I was discussing my baby with my midwife, she pointed out that Miranda had oddly bent looking big toes, and that her thumbs also didn’t bend outward much from her palms.  I remember thinking, why all the fuss?  Aren’t all babies kind of scrunched after the ordeal of birth??  At that point, of course I had no idea that those symptoms are characteristic of Fibrodysplasia Ossificans Progressiva. 

In fact, we didn’t learn about FOP until Miranda was 2 years, 3 months old.  She had been symptomatic with repeat head swellings for the previous 9 months, and with neck and back swellings for 1 month by that time.  In retrospect, it would have been good to have the diagnosis a few months earlier, but anyway I am profoundly grateful that we spent one and a half years with no suspicious signs (other than the bent toes and thumbs).  Miranda’s baby year and the first few months of toddlerhood, at least, were completely normal.  Good memories…

Anyway, fast forward now to Miranda’s fifth birthday.  Speaking of FOP, I’m glad to say (knock on wood) that Miranda has no flare-ups right now, and hasn’t for a few months, which means we could thoroughly enjoy the birthday with no distraction. 

The celebrations spanned two days, Friday and Saturday.  On Friday, Miranda woke up at, I don’t know, 3 AM or something silly like that.  I had to firmly tell her that it was TOO EARLY TO WAKE UP!!  I had to repeat that every hour for the next 3 hours, then finally gave up at 6 AM.  Finally, upon awakening, Miranda vaulted out of bed and shouted to wake up Owen (Dad was already at work).  We all went downstairs, where Owen helpfully retrieved Miranda’s wrapped presents and brought them to her.  In short order, she ripped her way through all but one present; we had told her she had to save one for when Dad gets home.  She got some loot she was pretty happy with, including an authentic Team Canada Olympic hockey Jersey from her Baba and Grandpa Mal in Calgary!  (Actually, Owen got one of those too for his birthday, and though his big day isn’t for 2 more weeks, we let him open his that day too - the jig was kind of up.)

The kids in their jerseys... Typical Miranda with eyes closed (I couldn't get them to pose again, so this pic was the only one I got).

I had the day off work Friday, as I always do, and we had some stuff planned, but first we had to drop Owen off at school (which we did), and then I had to take care of about 15 minutes of work-related tasks.  I went downstairs to my office, leaving Miranda to watch TV.  I was on the phone with my client, not 5 minutes later, when Miranda came downstairs excitedly holding the final gift, which she had just unwrapped!!  What a monkey…

That morning we did a swimming lesson with Miranda’s physiotherapist, and bought some ingredients to bake her birthday cake.  We then picked up lunch at Subway (Miranda’s choice) and went home.  After lunch, we baked a super-delicious chocolate cake which we’ve made many times before, picked up Owen from school, and then killed some time ’til Dad came home.  Pizza for supper from our local pizza place rounded out the day.

Yesterday, Saturday, was party day.  Miranda had 7 little friends and her Farmor (Danish grandma) come over.  First, the girls played with a bunch of Miranda’s toys.  A big hit was Miranda’s new “Grinch” board game, in which you have to sing REALLY LOUD so that a sound-sensor responds to your voice by sending a plastic sleigh full of plastic presents crashing down the side of a cardboard Mount Crumpet.  Oy, that was noisy…  Then we had lunch, which was hot dogs, hamburgers, fruit and chips, and of course the cake.  After lunch it was present unwrapping, and then a quick game of “pin the flower on the Tinkerbelle fairy” (yes, that game has evolved ).  Finally, the kids all went home, loot bags clutched in their sweaty little fists.

Miranda blowing out her candles.

Miranda’s 5th birthday was lots of fun, and very typical (which is one reason why it was fun).  I’m hoping this birthday was a sign of what the coming year will be like - positive experiences and no FOP complications.  It’s going to be a big year for Miss M, starting kindergarten this coming September and finally being a school-aged kid.  Please wish us luck for the coming year.

It’s January, and we’ve signed Miranda’s brother Owen up for swimming and skating lessons.  He’s got a lesson going every night Monday through Thursday.  Until not too long ago, Miranda accepted this as natural and didn’t question why she wasn’t in any classes.  She was, after all, too young for most things.  Recently, however, she’s been starting to think about activities, especially since her friends are talking about them.  She knows, for instance, that a few of her friends take ballet lessons and another is in gymnastics.  Miranda is learning to swim, but that’s a once a month thing with her physiotherapist and she’s not in lessons at any community pool (her arm restrictions would prohibit that). 

We had a funny moment a few weeks ago - Miranda’s friend was chattering on about how she was taking “Sea Turtle Advanced” level swimming lessons, and Miranda said she was taking swimming lessons too.  She said, “I’m not in Sea Turtle.  I’m in…  Floating.” (which is what we were working on with the therapist).  It was kind of a funny moment, but made me realize I should think about activities for my little miss.

So what are good activities if you’re just about 5 years old, and have Fibrodysplasia Ossificans Progressiva?  I’d venture to say the answer varies from child to child.  I do know one little girl with FOP who’s about 5, and she IS taking ballet lessons.  I think that wouldn’t work for Miranda though - unlike the other little girl, Miranda has almost no shoulder movement and so couldn’t do most of the arm movements.  Also, ballet involves lots of running on a hard wood surface, and Miranda is too prone to tripping when she runs a lot.  Also, I think skating is out, for obvious reasons (all that hard, hard ice, yikes).

But…  I don’t think it’s fair that Miranda should be kept out of all activities because of that stupid ole’ FOP.  And so, over the holidays, I sat down with our City of Burnaby Parks and Recreation guide to see what I could find.

First I looked for music lessons.  Music is a good idea (especially singing - expands the ribcage) but most types of such lessons seem to start at age 6, and M is just turning 5.  I did find one program in the guide, but it seemed to involve dancing as well, and I wasn’t sure about that.  I think we’ll be returning to the idea of music lessons when Miranda is a little bit older.

During the holidays, we went to a carol singing party, where Miranda was delighted to "help" the piano player by pressing a single key repeatedly during the song. Musical genius in the making, perhaps??

Pretty soon I figured out that should focus on the “preschooler activities” section of the guide (yeah, duh, I know, kind of obvious).  Lots of those activities seemed to be focused on running and tumbling  in gyms - not what we’re looking for.  I did, however, see one thing that looks promising.  It’s called “Kindercooking”, and is for kids age 3 to 5.  The idea is that an instructor teaches a group of kids about healthy snacks and how to prepare simple recipes.  I checked into it with the group instructor, and she was supportive of Miranda participating.

And so, Miranda is now registered to start her Kindercooking class on Fridays in February, from 12:30 PM to 2:30 pm.  I think she will have a lot of fun in this class, and learn some interesting things.  I’m really glad I was able to find an activity which looks suitable.

Miranda enjoyed making a gingerbread house during the holidays; maybe cooking will be right up her alley.

On the down side, the City can’t provide one-to-one support for Miss M during the class.  However, I think it will be OK anyway.  It’s only two hours per day, once per week, and the kids will be absorbed in preparing their recipes.  Also, I’ll be on-site (though not in the classroom) during the class, so will be available right away if anything were to happen.  Naturally, I will also be briefing the instructor thoroughly on what she needs to know about FOP.

Please wish Miranda luck as she starts this new adventure.  Also, if you are an adult with FOP, or the parent of a child with FOP, please feel free to share your comments with me about lessons or activities you or your child did (especially if FOP had been diagnosed at the time).  I’d love to get more ideas.  Thanks.

‘Tis the time of year to do countdowns, lists, reviews, etc of all and sundry which happened in the previous 12 months.  And so, with that theme in mind, here’s what happened in respect of Fibrodsyplasia Ossificans Progressiva in our household in 2009…

First, and most importantly, I can say with relief that a very significant thing DIDN’T happen - in 2009, Miranda had no new joint fusions.  Phew…!  I am delighted that she made it through the the year with little happening by way of FOP activity in her body.  Yes, Miranda had a handful of smallish flare-ups on her torso, but all of that was pretty minor and occurred in the first eight months of the year (nothing at all in the last four months!).  Hopefully 2010 will be like 2009 in that regard, or maybe even better.

2009 began with me obsessing over the application for registered charity status which our new Canadian FOP group, the Canadian FOP Network, needed to submit to the Canada Revenue Agency.  It took a while to complete the form, which was multi-pages in length and required LOTS AND LOTS of detail.  Finally, after much blood, sweat and tears, I got it out the door in late January or early February.

The next thing which happened, some time in the spring (can’t recall exactly when), was that my dear dad, Miranda’s grandpa Malcolm Munro, was elected to the board of the International FOP Association.  I was really thrilled that Dad was willing to take on such an important role, with so much meaning to our family.  I’m certain my father is doing an excellent job as a board member, as witnessed by him rapidly becoming the vice-chair of the board, and later its secretary.  I think my dad has brought a good perspective to the board, being one of the few non-American board members in its history.  In fact, later in the year he wrote an interesting and important article for the group’s newsletter, the FOP Connection, about FOP groups and their leaders in different parts of the world.  Great work, Dad!

At the end of May 2009, Pete and I and our two kids flew to London, Ontario, where the Canadian FOP Network was holding its first ever FOP conference and family meeting.  My mom and dad and Pete’s sister Anna also met up with us in London.  Our president, Carrie Connell, was the driving force behind this conference, and I’d have to say she did well over 90% of the preparatory work for it (it helped that she lives in London and works in the facility where we held the event, but still…).  The conference was wonderful, with detailed presentations by our dear Dr. Fred Kaplan and Eileen Shore of the “UPenn Centre for Research into FOP and Related Disorders”, as well as by other medical and research specialists. 

Miranda with her Grandpa Mal at the CFOPN conference.

This event also marked the first time I and my family had met adults with FOP.  I wasn’t sure how it would be.  Would I feel sad?  Stressed for the future?  Overwhelmed?  In fact, none of that happened.  I remember the first adult I met, a young Canadian man with FOP.  This is going to sound silly, but I wanted to give him a hug and jump up and down for joy.  I felt a sense of euphoria; a mix of happiness that I was finally meeting with our “peeps”, relief that this fellow was so at ease in the world (despite his physical limitations), and eagerness to dive in and get to know our Canadian community.

Anyway, I think the conference was a big success, and I have to give a very big thank you to our president, Carrie, who did so much hard work to put it all together.  I think it was an excellent first official event for our group.

Just about a month later, at the end of June, I flew to New Jersey to attend an FOP mothers retreat hosted by the legendary Amanda Cali.  Amanda is an amazing woman, well-known in the FOP community as the mother of Ian Cali, now a college student with FOP, and also a driving force behind the development of the FOP centre at UPenn.  Amanda was the gracious host to seven women at her lovely home.  With the exception of Amanda, who had come to our Canadian meeting (and who’s help had been invaluable),  I hadn’t met any of these moms before.  This wonderful four day weekend was both very relaxing and tremendously emotionally cathartic.  It was amazing to share experiences with these others moms of children with FOP…  For once, everyone in the room really got my day-to-day life dealing with my child’s FOP.  My only regret about the event was that my friend Suzanne McCloskey, Erin’s mom, hadn’t been able to attend.

In the summer, we heard back from the Canada Revenue Agency on our CFOPN charity status application (6 months probably sounds like a long wait, but in fact I’m told it’s often several months more!).  We were dismayed when the CRA rejected our application.  Denied!!  We were, however, determined to become a charity, and so contacted the CRA to find out what we need to do to reach our goal.  We learned that we hadn’t been rejected because we were deemed unworthy, or innappropriate to be a charity, but rather because we hadn’t been exactly precise enough in the information we had provided with our application (my bad, but in defence I have no legal experience with charity law).  So, we jumped through a few hoops, revamped our applixation and submitted an appeal, and were both relieved and thrilled when the CRA granted our application and made the CFOPN a registered charity effective in September 2009.  Hooray!

September was also the month in which I took Miranda and her brother Owen down to Seattle for a weekend to visit with the McCloskey family (Pete had to be away on business during that time).  Suzanne held a “PartyLite” event that weekend to sell candles and accessories and raise funds for the International FOP Association.  The party was a success, and raised a nice amount for the IFOPA.  I also had the opportunity at that event to meet Sarah Steele and her mother for the first time; Sarah is a young woman with FOP living in Redmond, Washington (I think?  my apologies if I got it wrong).  During the party, Miranda and Erin kept us all amused by building a huge pile of stuffy toys in the McCloskeys yard - too funny.

Two giggly girls and their pile of toys...

I think that pretty much rounds out the list of major events during the year.  Throughout all of this, Miranda played, laughed, went to pre-school, made poop and fart jokes with her brother , and did all the things a 4 year old typically does.

I think 2010 will be a quieter year than 2009; we don’t have any major events planned.  However, that will be just fine too.  Mainly I’m just hoping for another good year, and hopefully some more advances on the research front (oh yeah, there were some of those too in 2009, but I just don’t have room to discuss those here). 

Happy New Year, everybody!