Sometimes I blog about challenges we have with finding activities, especially sports, which my daughter Miranda can do.  Yes, Fibrodysplasia Ossificans Progressiva has its difficulties, but for lots of things there’s little or no FOP complication.

This past week, for instance, Miranda and her class participated in a Chinese New Year celebration at her school.  The kindergarten and grade 1 kids had practiced various songs and presentations for some time, and they got to show of their hard work at an assembly.  Miranda was clearly excited about it – she must have asked me about 20 times if I was going to come and watch! 

It was really cute.  First, some of the kids dressed up like a Chinese dragon and did a parade through the gym.  When that was done, some of the other kids (including Miranda) sang a song in Mandarin.  I was impressed how well they did, singing in another language…  After that, various smaller groups split off and presented their own things, one by one.  Miranda’s group did a “Chinese fashion show”, where the girls walked out in pairs to the front of the gym and modeled beautiful Chinese dresses, smocks and parasols – apparently one of the teachers had taken a trip to China earlier that year and had brought back all of these items to donate to the school (wow).  When it was Miranda’s turn, she proudly walked out with her little friend, the both of them wearing lovely outfits.  Miranda was grinning very hard; she was so delighted.  After all, what 7 year old girl can resist a chance to play dress up?

After a few more small group presentations, they all gathered again to sing more songs, and again, Miranda participated with gusto.

Back in 2007 when Miranda was first diagnosed with FOP at age 2, I was so scared of so many things, and doubted that Miranda would be able to be a fully active member of her community.  The pain and devastation which I felt (understandably) clouded my ability to see things in perspective…  I’m so glad my fears were not realized.  Miranda has proven herself to be, first and foremost, a kid like any other, and a happy participant in many school and other activities.

Here's a picture of Miranda and her friends which appeared this week in the Burnaby Now newspaper.

It seems we spent a lot of time this week talking and thinking about sports.  More specifically, my daughter Miranda’s participation in same.

In Canada, sports are encouraged for everybody, able-bodied and those with disabilities alike.  Miranda, at age 7, can’t help but absorb that.  But…  Miranda’s  Fibrodysplasia Ossificans Progressiva is a disorder which makes many sports challenging or impossible.

The discussion in our house started with one of Miranda’s birthday presents from last weekend.  The gift was a cute figure skating outfit, complete with authentic looking skates, for her doll.  Miranda LOVED this present, and spent much time dressing her doll in it and playing “figure skating competition”.  Obviously this got her mind ticking, because a few days ago, she said casually to me, “Mom, I saw a thing on the internet where you can get pretend skates that you can wear, but they don’t really skate.”

This ripped my heart out.  I know Miranda saw no such thing on the web, but rather was thinking about being unable to go ice skating.  Ice skating is just too risky (IMHO) for people with FOP – much likelihood of falling on hard ice (especially as a beginner skater) and causing an FOP flare-up which produces new bone and more limited movement.  Additionally, existing FOP bone in Miranda’s back severely restricts trunk movement, and you need to be able to twist, turn and bend your back when you skate.  And so, we’ve pretty much written off skating.  All I could do was commiserate with Miranda, and try to distract her with something else.  But geez did I feel bad for her.

In fact, I started pondering whether I COULD find a way to get Miranda skating.  I know that for her, sitting on a sledge and being pulled around the ice just doesn’t cut it.  I wondered…  Does anyone out there help folks with disabilities skate?  I tried an internet search.  The one really relevant thing I found was a registered charity which creates special adapted ”frames” to help children with disabilties be able to skate by holding them firmly upright while on the ice.  Sounds great, but…  Downside – I couldn’t see any evidence that they sell these things, but rather use them in their own skating programs.  In the USA.  Sigh. 

The next thing was also a few days ago.  Miranda said to me, out of the blue.  “Mom, I’m 7 now.  You can play floor hockey after school when you’re 7, like Owen does.  Can I sign up for floor hockey?”  (!)  To the depths of my feminist soul, I hate the response I gave her, but it was the first thing which came out of my mouth in a desperate attempt to not have to tell her YET AGAIN that she can’t do something because of FOP.  I said, “Umm, Miranda, you know that almost no girls play that, right?  It’s almost all boys.”  She then backtracked pretty quickly, and said maybe she didn’t want to play floor hockey after all…  Gah, I hate myself for that one, but I knew that Miranda “I’m-a-girl-and-I-only-want-to-do-things-girls-do” Friz would quickly abandon floor hockey without me having to mention FOP.  (I feel, in a complex way, both guilty and relieved at the same time.)

Finally, maybe because of all this other talk, I started thinking again about T-ball this spring for Miss M.  She told me recently – hmm, maybe it was even this week as well? – that she wants to play.  OK, this is the one team sport she can play in a quasi-safe manner, albeit decked out in Klingon battle gear for safety, ha ha.  She played last year in our local “Learn To Play” league, which for kids that age isn’t even games, but just doing drills to learn the basic skills. 

Still, even with helmet, knee and elbow pads, etc, my heart was always in my throat last year watching her play.  I wondered if maybe a “special needs” league would be a better idea.  I talked to one of their coaches, and he was very encouraging.  However, he said one thing which made me pause.  He said, in a nutshell, that the most important thing about the sport is for the kids to be with their friends.  Paradoxically, that’s what sold me on putting Miranda back in the regular league.  That’s where her classmates play, and she loved last year that she was on the same team as them.  And so, I told my husband Pete that I figure M should do the next step up in “Learn to Play”, which is T-ball.  He shares my concerns, but agreed.  We’ll just have to suck up our fears, grit our teeth and let her play.

Here's Miranda (with purple lips from eating candy, LOL) watching a university hockey game with her brother Owen, dad and me (the photographer) last night at our local arena. OK, so she can't play hockey, but she can have fun watching it.

If you or your child has FOP and you have any stories, thoughts, etc about playing sports (post-diagnosis, of course), I’d love to hear ‘em, so please leave a comment.  Thanks a bunch.

Today Miranda is 7 years old.  7.  SEVEN.  I can’t believe it!  Where did the time go, and how did my girl get so big?

This whole weekend has been, as it should be, all about Miranda.  We kicked off the festivities on Friday evening by letting Miss M pick where we go for supper.  She went back and forth on the decision all day, and in the end, finally picked Boston Pizza.  That turned out to be a pretty good choice, because the waitress did her up a nice little brownie with whipped cream and gummy worms and the words “Happy Birthday Miranda” spelled out in raspberry and orange coulis and chocolate sauce.   That was such a sweet thing for her to do, and Miranda was DELIGHTED!  Neat way to start the weekend.

Next up was her birthday party, on Saturday afternoon.  Picking the venue for Miranda’s party always requires a bit of thought…  Certain places are just not good choices because of Miranda’s Fibrodysplasia Ossificans Progressiva.  A jungle gym style party venue, for example, isn’t the best option, because Miranda’s arm FOP arm restrictions limit how much she can climb on things.  Bowling is also a problem – that arm thing again.  Last year we did gymnastics, which sounds on the surface like a wierd choice, but was actually great because of all the soft floor mats (ie, allowed lots of running around, which M doesn’t usually get to do because of FOP).  This year, the choice was a swimming pool party.  Miranda so loves the water…

We had a bit of a glitch at the beginning.  When we arrived, we learned that the birthday party we had arranged and paid for had somehow been booked by the city parks and recreation department at a different pool!  I still don’t know how that happened…  Fortunately, the pool we were at was very accommodating and found space for us to have Miranda’s party at that facility.  Miranda and her 6 pals swam (with lots of parent supervision) for the first hour, then went to the party room for pizza, cupcakes and presents.

OK, a plug now on the cupcakes.  Ours were made by the fabulous Amy Kelly, who does business in the Vancouver area as “Amy’s Southern Cakes”.  These little cakes were so terrific – vanilla with confetti sprinkles in the cake, and piled high with pink buttercream icing, and each cupcake had a letter on it…

In case you can't tell, the cupcakes spell out "Happy Birthday Miranda".

They were THE BEST!  The kids loved them, and a few of the kids asked for seconds (which is a real mark of approval).

Miranda and her pal (* I offered to take off the helmet, but she said she wanted to wear it. Okee dokee.)

Anyway, the girls all had a great time, and then before we knew it, the party was done.

Miranda with her mom and dad and a couple of friends

Finally, today is Miranda’s actual birthday.  She woke up to a pile of birthday presents stacked up on the dining room table, and was really excited!

Just before plowing into the gifties...

Between gifts from her friends and presents from family, I think our girl got pretty much everything she wanted. 

We’re going to round out the day with Miranda’s favourite homemade supper, macaroni and cheese with ham chunks stirred in.

Yay!  I thinks it’s been a very happy birthday.  Here’s to many more.

A week or so ago, a friend of mine posted on Facebook that she was doing that exercise where you think of a single word which best describes what you hope for/want to achieve this year.  I thought about that, and had an immediate response.  The word I thought of?  Confidence.

I pondered this a bit, and realized that I can think of lots of ways in which confidence will assist in my professional and personal life, and it also fits very well in the context of dealing with my daughter Miranda’s Fibrodysplasia Ossificans Progressiva.  In fact, the word “confidence” is another way of stating the second half of my personal philosophy regarding FOP:  “plan for the worst, but believe the best can occur”. 

The “worst” is pretty bad…  If FOP takes its natural course, Miranda’s hips will fuse, such that she is permanently locked in either a sitting or standing position.  Her wrists and the rest of her remaining elbow movement (lots of it is gone already, thanks to FOP) will be lost, making her unable to do much with her arms.  Her jaw will be frozen in place, making eating difficult and possibly requiring the removal of teeth.  Worst of all, FOP bone can so restrict her chest movement that her lungs become compromised and her lifespan is shortened.

As I said, all of that is horrible.  If I walked around thinking about it all the time, I’d lose the ability to function as a rational adult.  Instead, I choose to accept that those possibilities are out there, and accept that we may have to deal with them, but to focus on what’s good about our situation and have CONFIDENCE that things will continue that way.  There are so many reasons for confidence…

First, it looks likely that our FOP experts are going to figure out how to crack the FOP nut.  In fact, they’ve already done it at the laboratory stage, and they’ve even succeeded in doing it in multiple ways.  2010 and 2011 were chock full of new scientific studies having been released in which various scientists announced discoveries of new medicinal compounds which largely or completely block the effects of the FOP gene.  OK, so none of that stuff is at the stage of human testing yet, but much of it is clearly headed in that direction.  It could very well be that within a few years, there will be a drug available which neutralizes FOP, and Miranda will get to avoid all the really bad effects of advanced FOP.  I can have confidence the research will continue, and I need to remember that when times are difficult.

Second, I have a great kid who adapts well to new circumstances.  Can I have confidence that she’s going to continue to thrive in school and socially?  Absolutely!  Miranda’s been such a champ this far; I can’t think why this wouldn’t continue.  Miranda loves school, is engaged in learning, is taking piano and art lessons (the latter to begin next week), has friends she plays with, and has a fun, gregarious personality.  I think this girl will go places.

Third, the world is a changing place.  New technological advances mean that people with disabilities have ever increasing likelihood of being able to work and otherwise engage meaningfully in society.  This isn’t the world of 100 years ago, when it wasn’t uncommon for a person with FOP to either stay permanently at home with no social contact, or to make a living by joining a circus freak show (yes, this happened).  Even if the worst happens, and FOP continues to affect Miranda unchecked through her life, she can still have a great life.

Miranda, age 6 in 2011 - a kid with a great future!

Confidence.  Yep, that’s my word for 2012.  If you’re challenged by FOP or something else, do you have another good word for 2012?  I’m curious, so leave a comment and let me know…

Ah, it’s New Year’s Day…  A day for looking ahead, and hoping for a great year to come.  On the downside, seasonal holidays are only 1 day longer – d’oh!  Our family has had a really fun break, and while we’ll be refreshed and ready to get back to the regular routine, I’ll be sad to see it end.

One good bit, for example, was that from December 26 through 29, we had our son Owen, age 9, signed up for his first ever set of snowboard lessons at Cypress Mountain.  He went 4 days straight, from 8:30 AM to 3:30 PM.  (OK, the part where we had to get up early to drive him each day wasn’t so hot, but we managed.  )  Our routine was for one of us to ferry him to the ski hill, then return and spend the rest of the day with Miranda. 

Unfortunately, snowboarding and skiing are activities that Miranda, with her Fibrodysplasia Ossificans Progressiva, just… can’t… do.  What I mean is that my husband Pete and I have considered the risks, and decided that these snow sp0rts pose too many difficulties and risks for Miranda.  First, there’s the movement part of it – to ski or snowboard, you have to be able to shift your torso and move your body freely in order to keep balanced and going forward.  This is impossible for Miranda due to her rigid spine, unmoving shoulders and (mostly) locked elbows.  She just wouldn’t be physically able to do it.  Second, there are the dangers associated with these sports.  I remember that when I learned to ski, there were multiple occasions when I wiped out spectacularly, with one ski going one way and the other going the opposite direction, causing multiple bruises and muscle strains – all of which would be bad news for a person with FOP, who is likely to suffer an FOP flare-up with more resulting bone formation.  Yikes.

But though Miranda can’t do these sports, we wondered if there was anything else she could maybe try at the ski hill.  Pete looked into it, and he learned that   there’s a snow tubing area at Cypress.  It turns out that if you’re age 6 or older, you can go to the snow tubing place and pay a fee to rent a big inflated inner tube, get towed up a hill and slide down the hill in the tube.  I was kind of leery about this…  Miranda is 6 years old, so is the youngest age at which you are allowed to participate, and besides, I wasn’t sure how she’d manage with the tube.  Still, we decided that the three of us would go up to Cypress one day while Owen had his lesson, and that Pete and I would take turns skiing and checking out the tubing hill with Miranda.  We figured that if the tubing looked OK, she could go tubing, but if not, then surely she could at least play in the snow.

We went up on December 28, and we decided that I would ski first and Pete would spend the morning with Miranda.  It turns out that he took her to the tubing area, and from the get-go, she was VERY keen to give it a try.  Pete scoped it out, talked to the attendants about risks, etc, and decided to make it work.  He got a free ticket for the tubing area as he was helping Miranda (this is Cypress’s policy for attendants with people who have disabilities), and he paid for a standard tubing experience for Miss M. 

It turns out that Miranda loved snow tubing!  Pete says that she made it to the bottom the first time, and then shouted, “That was SO MUCH FUN!  Can we do it again?”  She then went up and down the hill a whole bunch of times, laughing all the way.  Pete sat in his own tube and held on to hers (which, strictly speaking, wasn’t necessary, but it made her feel safer).

Miranda lasted a bit over an hour at this, which sounds like plenty to me.  After that, they went back to the ski lodge and got some lunch, and then Pete and I switched off and he went skiing.

I’m so very glad that Miranda had such a great time doing snow tubing.  She raved about it afterward, and says she wants to go back and do it more.  So why was it so great?  I have no doubt that Miranda had a blast, but I don’t think that’s the whole story…  It was at least as important that she had the chance to do a fun snow sport just like any other kid.  In fact, she even saw one of the other children from her grade 1 class at the tubing area, and though she didn’t specifically say this, I bet she was proud to have been seen by him doing snow tubing.   

Miranda even got to sport one of those nifty little ski tags on her parka.

On a totally separate topic, Happy New Year to you and yours! 

Today is Christmas Day…  “It’s the most – wonderful - ti-i-i-i-me of the year!” 

Miranda, age 6, and her brother Owen, age 9, have ripped into their presents and are now having a great time playing with new treasures.  Later on today, we’ll eat turkey, sweet potatos and all the fixings, and even more importantly, will love and enjoy each others’ company.  Miranda will even play “Jingle Bells” for us on the piano. 

Before I rejoin the festivities, I’m going to take a page today from my friend Yolaine’s book, and say a very special and heartfelt Merry Christmas to all my friends who live with the effects of rare diseases.  This past year, I got to know a wonderful bunch of people in the rare disease community – families newly coping with Miranda’s genetic disease, Fibrodysplasia Ossificans Progressiva, and others with different and varied conditions such as Dup 15, Prader-Willi Syndrome, Maple Syrup Urine Disease, disorders yet to be identified and many more.  Every one of these conditions brings heartbreaks, but they don’t define ourselves or our children.  It’s so very, very important for us all to appreciate that, and what better time to do so than Christmas?  Christmas is a special time, a chance to focus on the things we value and cherish about ourselves and our families, and to set aside (as much as possible) our health worries. 

And so, my Christmas wish for all my rare disease friends is for a wonderful, happy, relaxing and joyous day.

Miranda and Owen on Christmas Eve

Before I go, one more thing – a big and profound THANK YOU to my cousin John and his wife Anne, who made an extremely generous and warm-hearted donation to the International FOP Association in honour of our Miranda!  I am touched beyond words at this sign of their love.

Finally, Merry Christmas all!

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 co-blogger Suzanne.  It’s a really great charity which exists to plan and carry out fun events for children with serious illnesses/medical disorders and their families.  My daughter Miranda (age 6) qualifies because of the progressively disabling nature of her Fibrodysplasia Ossificans Progressiva.  Anyway, every year Starlight does a great Christmas bash, complete with lunch, yummy holiday treats, face painting, Santa Claus, presents for all the kids and culminating in ice-skating.

This is the third year we’ve been, and it’s lots and lots of fun.  Miranda particularly liked the very colourful clown who did face painting and balloon animals/objects…

And Owen (age 9) thought it was a hoot that the clown could put temporary Vancouver Canucks green colouring in his hair…

Owen with green stripes in his hair, and Miranda with a candy cane painted on her cheek. M is also wearing balloon fairy wings.

Pete got in on the action too with a green beard.

Owen wasn’t so big on all the arts and crafts stuff, but that was RIGHT up Miranda’s alley.  She decorated two gingerbread cookies, made paper Christmas tree ornaments, coloured a Christmas picture and did two rounds of “spin art” (a spinning machine with paper mounted in the middle; the child squirts paint into it and makes an abstract and colourful painting).

It’s a good thing Miranda enjoyed the crafts so much, because unfortunately, she couldn’t take advantage of the skating.  Skating is just too much of a no-no for Miranda with her FOP – for one thing, a fall on the ice has excellent potential to cause an FOP flare-up (painful swelling leading to movement-limiting bone creation), and for another thing, Miranda’s spine is so rigid due to FOP bone that she wouldn’t be able to bend and twist her torso in the way necessary to skate effectively.  In past years, the Starlight party was at a different place with a rink which had hockey sledges in which a child could sit and be pulled around the ice, which is what we did with M, but go figure, the Vancouver Olympic Speed-Skating Oval had no such sledges…  Since Miranda couldn’t go on the skating rink, the good Starlight folks were happy to let her stay in the arts and crafts room during the skating part, and she was happy to stay there and do more art.  (Aside – in the past, Miranda has been sort of lukewarm about the sledge anyway – even in the context of Starlight, which has kids with all sorts of disabilities, including in wheelchairs, M thought she stood out when she was in the sledge.)  My husband Pete and I took turns skating with Owen and looking after Miranda.

Me and my girl (yes, that's a bit of red in my hair too!).

The Starlight party was a great start to the yuletide season.  Always so much fun.  Here’s hoping the rest of the holidays are just as fun…

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. Kaplan is that he has the power to make an FOP parent feel like SOMEBODY knows what’s going on, and that same somebody cares!  I really feel that sense coming across in Shannon’s blog.

On an entirely separate note, more good news about FOP research – it seems that Harvard University (yes, Harvard! how great does that sound??) just got funding to start work on testing an FOP drug.  Here’s the link to the story about it:

http://www.eurekalert.org/pub_releases/2011-11/nhgr-ntp111411.php

I figure, the more people doing FOP research, the better…  It’s all good. 

Finally – just FYI, I will be taking a break from this blog for the next 3 weekends.  There’s a major thing going on in my work which is going to occupy many, many hours of my time from now through mid-December (so SUCKS to have to work weekends, but ya gotta do what ya gotta do).  I’ll return to my blogs December 18(ish).  Bye for now, and for no particular reason at all, here’s a random picture of Miranda and her brother Owen which I recently took…

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…

"Waahhhh! I don't want a flu shot!"

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 the flu.  Specifically, our scientists tell us that if you have FOP, contracting the flu can stimulate the stimulate the immune system to start an FOP flare-up.  While a flare-up isn’t a sure thing if you catch the flu, there is most definitely a higher fisk of it happening.  As such, part of the strategy of trying to minimize FOP flare-ups can be to get a yearly flu vaccination.  However, there’s a catch – a person with FOP shouldn’t get an intra-muscular injection, which is how the flu vaccine is typically administered, because the trauma of a needle injection alone can cause a flare-up (aside – I know of at least 2 children whose FOP was diagnosed following bone formation after an IM injection).  A person with FOP can still get the flu vaccine, but it has to be administered either as a nasal spray, or else as a sub-cutaneous (under the skin) injection. 

I confess that until Miranda got diagnosed with FOP in April of 2007, we didn’t bother getting flu shots for our kids, though I always got one myself for free at work.  We just didn’t think much about the flu.  But after the FOP diagnosis, when we learned about the flare-up risk from the flu, we wanted to get Miranda a flu shot in the autumn of 2007.  However, Miranda had ongoing FOP flare-ups that entire fall, winter and early spring 2008, and a person with FOP shouldn’t get any vaccinations during a flare-up (doing so can make the flare-up really go haywire), so we didn’t do it that year.  Ditto the 2008/2009 flu season. 

In the fall of 2009, however, M was mercifully flare-up free, so we decided to get it done.  Our pediatrician administered 2 sub-Q shots that fall, the H1N1 shot in her left arm and the seasonal flu shot in her right arm – both on the same day.   No, M didn’t develop a flare-up, but the area around her injection site on her left arm swelled up hugely and went red as a lobster (this wasn’t a flare-up, but rather a skin reaction of some sort).    Eventually this swelling went away, but it was VERY painful for my poor little sweetie while it lasted.

In the fall of 2010, Miranda was also flare-up free, and that year our pediatrician suggested a newly-on-the-market nasal spray vaccine.  I started looking for it, but then got delayed, and looked some more, and kept putting it off, and next thing I knew it was February (d’oh!) and the nasal spray was all gone.  Our pediatrician didn’t have any more vaccine by that time, so he recommended our local health region.  I made an appointment for M there, but when we arrived, they didn’t have the right kind of vaccine to inject sub-Q, so we had to delay it again and come back another day.  We finally got it done in late February or early March, as I recall.  This time Miranda had only a tiny bit of minor swelling and redness from the injection, so all was well.

Which brings us to this year…  This time I wanted to get the flu shot done early.  I contacted our school system nurse, who knows about Miranda and had hooked us up last year, and she gave me the phone number to make an appointment.  She advised me to say we needed a sub-Q shot, which is what I did.  And so, our appointment was set for Miranda, her brother Owen and me to all get our shots done on Tuesday of this past week.  We went in there, and as the nurse was asking us the preliminary questions, I “reminded” her that we need a sub-Q shot for Miranda.  She gave me a blank look, and asked me what I was talking about. 

 To my surprise, the information that we needed a sub-Q shot for Miranda hadn’t been passed on to her, nor was it written in Miranda’s file (!!).  Accordingly, I explained the whole thing to the nurse, who then stepped out of the clinic room to “find out about this”.  When she came back, she told me that not only could they not do a shot for Miranda that day, they couldn’t do it PERIOD.  She advised me, gravely, that the flu shot could not be done sub-Q.  I was mystified by this time, and told her that her office had done it for us last year with no problem, so why not this year?  She said that last year, their office had received 2 types of the vaccine, 1 of which could be done sub-Q, but that they didn’t get that type of vaccine this year. 

I was pretty convinced that this was simply flat out WRONG, and I was steaming mad by that point.  After Owen and I got our own shots, we left the clinic and I planned to head straight home and call our helpful school system nurse again.  However, we then had a stroke of good luck – the nurse happened to be at the clinic that day, and saw us as we were walking out.  I told her what had happened, and she was very upset on our behalf.  She asked me to leave it to her to sort it out, and she’d call me back.  A couple of days later, I got a voice mail message from her in which she advised that we definitely CAN come in for a sub-Q shot (apparently the first nurse had been completely misinformed about these various “types of vaccine” – that was all rubbish) and that it can be done next week.  Further, she said that she had arranged for a prominent notification to be put in Miranda’s file to advise that her shots must always be sub-Q, and that the flu shot could safely be administered that way.

Now that’s a helpful nurse!  We’re going to go back this coming week and get the shot done.  But geez, what an unbelievable amount of craziness.  Maybe next year it will finally be a smooth process… 

If you or someone in your family has FOP and has ever had an “interesting” flu vaccination experience, tell me about it!

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 either lost interest in my usual activities or I haven’t had the satisfaction of taking a “time out” to do something for me.  Recently I did something I haven’t done in a long time.  I spent the day away from the family and went to a day long scrapbooking event.

Initially it was hard for me to engage. I found myself just wanting to hear my friends’ stories but wasn’t readily willing to give my update.  So I waited until I was asked.  Then I gave a quick, “Things are great!  Can’t complain!”

Still I have thought about, why have I been depressed?  Erin is doing beautifully…no obvious FOP (Fibrodysplasia Ossficians Progessiva) symptoms.  Her school is great and she’s been enjoying all the birthday party invites from her friends.  Hmm…our financial situation hasn’t changed …I am used to that.  We applied for Social Security benefits for Erin and was denied.  So still no medical insurance for the family.  Yeah, that can be a contributor but we’ve been without for a while now and I am kinda used to that too.

I happened to be on Facebook this morning and Arica Valona (another FOP mom) sent out an update on her daughter’s fundraiser “Jordyn’s Walk.”  After a quick post of, “We’ll be there!” under the update, Arica calls me.

We chatted for almost an hour.

I am so thankful for that phone call.  We talked about how “Jordyn’s Walk” has grown way beyond what Arica originally set out to do.  I was so moved by how their community has rallied behind her family.  It was so inspiring to hear how their local high school football team is required to participate in the walk, how businesses have stepped up to help without being asked, and how people are rallying behind Jordyn’s younger brothers as well.  FOP doesn’t affect a single person; it victimizes an entire family.

I can relate to Arica on so many levels.  Our current economy has slammed both of us.  Both of our husbands have struggled to find work locally…both families are struggling to obtain affordable health insurance…and both have vehicles that are not FOP friendly. I think that’s enough to send anyone in a downward spiral.

At the end of our conversation I promised that we will make the hour drive south to Gig Harbor, WA to support Jordyn.  An amazing thing happened when I hung up the phone with Arica…

I was smiling.

Not a fake or forced smile that I’ve grown accustomed to producing, but a true genuine feeling of happiness came over me.  I felt so good I started barbeque navy beans with apple-chicken sausage for dinner in the slow cooker, roasted four sugar pumpkins, and made a healthy vegetable/bacon stir-fry for lunch.  Nothing like food to fill the soul when it’s in need of repair.

Chances are my good feeling will fade but I have “Jordyn’s Walk” on  November 19th to look forward to.  “Jordyn’s Walk” will be held at Peninsula High School in Gig Harbor, WA with a pancake breakfast kick-off at 8:30AM.  All the proceeds from the walk-a-thon will go to Jordyn to help purchase a well needed wheelchair.  Jordyn was diagnosed with FOP around the same time Erin was (in 2008).  Since her diagnosis Jordyn has been afflicted with the horrific damages that FOP causes.  Her independence is at stake.  In order to stay safe, a special wheelchair is needed so Jordyn can go to school and get around on her own.

If you are in the area, I encourage you to go.  Lots of food vendors will be there including Ben and Jerry’s and Ivar’s.  In addition to there will be a silent auction set up, a bake sale, vendors donating their commissions, coffee, and popcorn.    The cost is $5 to enter the walk-a-thon but even if walking is not your thing…come for the food and festivities!

If you are unable to attend but would like to donate, you can go to Paypal.com and send a donation to jordynswalk@gmail.com.

To the community of Gig Harbor, my hat goes off to you.  Thank you for helping the Valona’s, especially Jordyn who desperately needs that wheelchair.

Q13 News coverage of Jordyn – Jordyn’s Walk

Article published in the Examiner on the walk-a-thon: Jordyn’s Walk