I am officially STOKED over our upcoming trip.  In my mind we have jumped over all the hurdles that we had to deal with.  First were all the August birthdays.  Second, get the kids ready for the new school year.  Third, pay the mortgage.  Fourth, wait for the mortgage payment to clear.  Finally, enjoy Erin’s “Wish Party.”

When we started Erin’s Make A Wish (MAW) journey, Cherelle and Eun-Ju (the MAW volunteers) asked us to think of a place or restaurant to have Erin’s going away “Wish Party.”  We were running out of time and I was out of ideas.  Luckily Maggiano’s Little Italy restaurant in Bellevue (Washington) offered to host the party.  Wow…what a party it turned out to be!

First, Erin threw a tantrum in the parking garage because we wouldn’t allow her to carry in a huge purse that she stuffed with toys.  MAW is always giving Erin some type of toy when we get together.  I had a hunch that she wouldn’t walk away from her party empty handed.  Still reeling from her tantrum, we enter the restaurant with a cranky little girl.  Maggiano’s is a very nice, dimly lit, Italian restaurant.  It definitely wasn’t on my top list of kid friendly restaurants but they proved me wrong.

Arriving at our table, MAW had a balloon bouquet and Maggiano’s gave Erin lots of princess jewels and make-up.

Erin checking out her new jewels and make up

As Erin was still warming up to her party, Lindsey from Esterline (the company who is sponsoring Erin’s wish) arrives with three bags of goodies.  Erin dived into her bag and pulled out a Disney Princess backpack, Disney Princess art supplies, stickers, Minnie Mouse t-shirts…oh the list goes on.  Esterline also gave each child a $50 gift card to use at Disney.  Needless to say, Erin was a much happier little girl.  Every new item she pulled from her gift bag, her smile became bigger and bigger.

Looking for the value of her gift card

We all chowed down on salads, lasagna, chicken parmesan, and grilled salmon.  Dessert was spumoni ice cream and Erin’s was brought out with lit candles.  She was a bit upset because she thought this was her birthday party and wanted us to sing “Happy Birthday” before she blew out the candles.  After some reassurance Erin blew out her candles and ate her ice cream.

Make a wish Erin!

At the very end, our wonderful waitress sat down next to Erin and asked if she had a good time.  She then told Erin that Maggiano’s had one more surprise for her.  The waitress left but promptly returned with a Sleeping Beauty princess Barbie doll.  Erin was so excited!  Erin was looking at the doll and said, “Mommy, she’s beautiful just like me!”

"Mommy, she's beautiful like me!"

Erin’s friends Austin and Ty Ty (with mom Kerri) gave Erin two really special Disney pins and told us all about the pin trading craze.  Erin has the Up! trading pins and now has two pins that only employees at Disneyland carry.  Now all she needs is a lanyard when we get there!  Our other guests were Uncle Sean, Alan’s friend Bryce, Lindsey from Esterline, and Erin’s MAW volunteers Cherelle and Eun-Ju. Thank you to everyone who came to share this moment with Erin.   It was truly heartwarming and it was a great kick off to our final countdown to Disney!

Erin spent the first hour opening up gifts

Our guests

Cherelle and Erin figuring out how to open her make-up

Lindsey from Esterline and Erin - Thank you Esterline!!

Share on Facebook

Erin started off the school year with a great night’s sleep, a good breakfast, and a cute outfit.  We gathered the kids outside for a quick picture.  Then Alan shuffled the kids off to school and that was it.  Our day at home was fairly uneventful.  The daycare routine went on as usual and surprisingly the kids  were quite content and quiet throughout the day.  Then 3:00 rolled around and everyone started coming home.

I was so anxious to hear all about her day but she gave me a quick “it was fine” comment and ran out to play in the backyard.  In my mind Erin was to come home, give me a great big hug and kiss, and talk non-stop about how exciting the day was.  But no.  Instead I had to ask her twenty questions just to get the gist of her day.  Erin was excited to share that they went to the library and picked out a book called “Pinkalicious” (very cute book for girls btw).    Later  Erin did tell me she wasn’t too pleased with recess.  She said there were too many kids for her to do anything.  I was sad to hear her say that but was glad to know that she understands her own limitations.

Brennan, on the other hand, did not have a good day.  All because a group of kids in his class saw Erin’s halo helmet.  They asked Brennan “what was wrong with her.”  Brennan, being the protective brother who he is, explained that she has FOP which causes her muscles to turn into bone.  Well, the kids heard the letter “P” and that just started a round of potty humor.  Of course Brennan didn’t like that the kids were laughing at the letter “P” because that meant they were laughing at his sister.  I understand why Brennan got mad.  Part of wanting to protect Erin is from knowing kids can be cruel.  No one wants their child teased or bullied.  Then to be laughed at because of something they can’t control.  Within the last few weeks the “momma bear” in me had to be subdued because of comments from other older kids.  I understand that kids “don’t get it.”  All they see is a child with a pink helmet on.  Adults use their life experiences to be tactful when approaching us and asking questions.  I am totally okay with answering questions and talking about FOP.  But to stand and stare, snicker, or make snide comments…  Well, I definitely have horns under my curly, box-red colored hair.

Currently we are working on day two of school.  Another good night’s sleep, a sort-of good breakfast (is Pop Tarts okay?), and another cute outfit and she was off for another adventure in kindergarten.

Tonight is Erin’s “Wish Party” with Make A Wish Foundation.  Make A Wish has teamed up with Maggiano’s Little Italy restaurant in Bellevue, WA to give Erin a fantastic dinner to celebrate her upcoming wish.  I can’t wait to share the story along with some pictures.

Share on Facebook

We’re coming into the home stretch…  One more week, and then school begins!  Since Miranda will be starting kindergarten, it’s an especially exciting time at our house.

It’s funny; Miranda herself is pretty low key about the whole thing.  She’s been in daycare/preschool, she knows lots of the kids she’ll be at school with, and she knows how to read…  So what’s the big deal? 

Lots of times when kids start kindergarten, it’s really the parents who are more worked up about it than anyone.  Lots of tears and (to quote my blogger friend Amber at Strocel.com) handwringing.  I expect I may shed a few tears myself, but not exactly for the same reasons other parents (OK, moms, heh heh) cry. 

In our case, of course, Miranda’s Fibrodysplasia Ossificans Progressiva will accompany her to school.  When she was first diagnosed with FOP, I thought Miranda might never be able to do things other kids could.  In time, though, I learned that was wrong, and that kids with FOP can do most things other kids can - they just may have to do them a bit differently.  School is a perfect example.  Miranda will be going to school just like all the other 5 year olds around here; the difference is she’ll have an educational assistant to keep her as safe as possible, and she’ll do only certain activities in phys ed class.

The emotional bit is that there’s a small part of me which still feels like I did the week after FOP diagnosis.   So, when my girl sets out to accomplish a “normal” thing, it’s a BIG DEAL.  I feel immensely glad and thankful that people like teachers, the school principal, etc, are going out of their way to make it work.  Other moms are crying because, “my baby’s got so big and here she is going to school, boo hoo hoo!”, and I’m crying because “my special daughter is having the chance to do what everyone else is doing, wah wah wah!”  I suppose that may sound silly, but…  It’s how I feel.

There’s another thing too…  As a rule, the members of my husband’s extended family and my own as well have done very well at school.  Post-secondary education is more the norm than the exception, and there are several advanced and professional degrees too.  Since FOP doesn’t affect the mind, there should be no reason why Miranda can’t follow in her families’ footsteps.  She’s already showing signs of solid intelligence - as I already mentioned, Miranda can read at close to a grade 1 level, and she hasn’t yet begun kindergarten (brag brag!).  Every parent wants his or her child to excel, and I figure that academics is Miranda’s best bet for excellence, though of course I’ll be thrilled with whatever her best efforts turn out to be.  In any event, some of those tears I’ll be crying will be about joyful anticipation.  I think school will really be Miranda’s “thing”.

Smarty-pants Miranda wearing her sneaky "I'm planning mischief" face.

Just one more week to go…

Last gasp of summer, washing the car with big brother Owen... And soaking wet!

Share on Facebook

Yesterday we returned home after a really terrific summer vacation.  We had been away for just over 2 weeks, spending the first week in Calgary with my family, and spending the second week at a condo we booked at the Panorama Mountain Resort.

As I commented in my last blog entry, I think my daughter Miranda really needed this vacation, given all the extra appointments we’ve had to do recently to get her ready to start kindergarten this fall.  It was time for Miranda to get away from all the focus on her Fibrodysplasia Ossificans Progressiva.  Fortunately, everything worked out really well, and we had only one incident, just at the end of our trip, which caused any focus on FOP.

During the first part of our vacation, Miranda had an absolute blast running around and having fun with her brother and Calgary cousins.  My parents have a big backyard containing a hill covered with grass, and a garden and berry patch on top.  Every day, there was Miranda up and down the hill at least a dozen times, and not once did she trip, fall or lose her balance (phew, thank goodness).  She even successfully navigated my parents’ uneven, irregular shale stone path up to the garden - every time she took that path I kind of held my breath, but she never once stumbled.

Miranda also did exceptionally well on some pretty significant day trips.  While we were in Calgary, we visited the Calgary Zoo, the Royal Tyrell Museum in Drumheller and the Calaway Park Amusement Park.  All of these outings involved A LOT of walking, but Miranda never complained or said she was too tired.  This is always a worry for us, because presumably she has less core strength due to lots of ossification of her back muscles, but to look at Miranda go, you’d never have known she had any such weakness….

Here's Miranda riding in a wagon at the zoo with her cousin, Ella. OK, so she could rest a bit there, but she really was OUT of that wagon more than she was in it...

During the second phase of our trip, we spent part of every day in the fabulous pools at the Panorama Resort.  This was RIGHT up Miranda’s alley.  She just loves to swim.  She can’t do it independently yet; we always put a life jacket on her and she also uses a “pool noodle” as well, but her skills are steadily improving and I think a time will come when she can swim on her own, even despite her limited arm movement.

We did some other stuff too while in Panorama, though it seems to me it was mostly swimming (ha ha).  One day, we went to poke around the national park which contains Radium Hot Springs.  While my husband Pete took our 8 year old, Owen, on a challenging hike into a canyon, Miranda and I made our way along a path with some amazing, breathtaking views.  Again, Miranda handled all this walking very well, with no trouble.

And then, on the second last day of our trip, we had to think about FOP again.  We were driving across British Columbia to return home, and on the way to our destination in Merritt, we stopped at an old favourite, the “Enchanted Forest” just outside Revelstoke.  This is a gentle walk carved into a forest on a mountain side, with dozens of hand-carved and crafted figurines from fairy tales and nursery rhymes placed throughout the walk.  The path really is quite modest, posing only moderate challenges.  And yet, of course the inevitable happened…  While Pete and I were looking away from Miranda at other things, she somehow managed to trip and fall forward onto the path.   There was nothing to trip on - she just…  Fell over her own feet.

This is so typical - Miranda at age 5 will now go for days and days navigating difficult terrain and successfully meeting big challenges, and then suddenly fall when we least expect it.  I guess this is a good reminder for us to try hard not to get complacent about Miranda’s safety…

Anyway, Miranda cried initially very hard, and I noted scrapes on her knees and her good left elbow.  Fortunately, she had been wearing her headband, and it worked well and protected her head, so she didn’t get any trauma to the head.  Usually, if Miranda cries hard, we take that as a sign we should dose her with Prednisone in hopes of avoiding flare-ups.  However, this time the crying stopped pretty quickly, and since the impact didn’t seem to have been too severe, and given that she’s had Pred a couple of times in the last few months, we made the hard decision (given the risk to her left elbow) not to administer it again. 

In any event, after Miranda stopped crying after her fall, she carried on with the rest of the walk through the Enchanted Forest, and she seemed to shake off any lingering upset about the fall pretty quickly.

Here's Miranda posing with a statue of Snow White.

(NOTE - 2 days later, we don’t see any signs of FOP flare-up, but we won’t be in the clear until about 8 or 9 days have passed.  Still, we’re not too concerned about this fall…  Hopefully we judged it right.)

OK, so Miranda falling at the Enchanted Forest wasn’t fun, and we could have left that part out, but over all the vacation was wonderful, and a great diversion from lots of thinking about  FOP.

Share on Facebook

In recent times, Miranda’s had to have a bunch of appointments and assessments related to her Fibrodysplasia Ossificans Progressiva.  This is all in connection with starting school in the fall.  I know it’s all necessary, but I can see she’s getting really tired of it.  Miranda’s just not cooperating as well with these things as she used to.  It think it’s just been too much lately.

And so, vacation came JUST at the right time…  Time to get away from it all, and forget about FOP complications. 

We’re doing the same trip this year that we’ve done the past 3 summers in a row.  Specifically, we got in the car on Sunday of this past week and drove to Revelstoke, BC, stayed overnight in a hotel, and then drove to Calgary, Alberta.  My parents, sister, brother, nieces and nephew all live in Calgary, and a week in town with them is the biggest chunk of time we get to spend with my family each year. 

We stopped at the railway museum in Revelstoke, and Miranda posed for this pic on one of their train cars.

Everybody was really excited when we arrived - and Miranda especially, because she gets to play with her super-outgoing and fun cousin Ella, who’s the same age.  Miranda and Ella get along like a house on fire!  What a great way to forget about FOP - playing stuffies/ponies/princesses/etc with Ella…

Today, all of us went to the Calgary Zoo.  We do this pretty much every year, but it’s always fun.  We walked through the dinosaur park, which has some very cool “animatronic” (ie, moving) dinosaurs, and then we went on to see a bunch of animals.  Miranda and Owen were excited about the tigers, and the red panda (? not sure why).  Also fun was the brand new carousel with zoo animals to ride on.  They LOVED that part…

Here are me and Miranda with some long-necked dinosaurs...

After the zoo, we came home and had burgers and corn on the cob at my folks’ house, and Ella, Miranda and Owen played all around the yard, picking berries and doing games of hide and seek.  Tonight, Ella’s going to try sleeping over with Miranda…  I have my reservations about this, but maybe it will work out!  (let’s hope, anyway)

Tomorrow: more dinosaurs, as we take a trip to the Tyrell Museum in Drumheller.  After that, barbecue dinner with some old friends.  Thursday: Ella’s 5th birthday party.  So fun.

“Summertime, and the livin’ is easy…”

Share on Facebook

The IFOPA sent out the following text in an email regarding the newly-established “Rare and Neglected Disease Caucus.”

“As part of our ongoing effort to reach our elected officials with the important message to increase attention to rare and neglected diseases, we wish to share this notice with you and encourage you to take action!

U.S. Representatives Joseph Crowley (D-NY) and Fred Upton (R-MI) have formally announced the newly-established Rare and Neglected Diseases Caucus. As co-chairs of the Caucus, Crowley and Upton will focus on

* Bringing Congressional attention to the 6,800 known rare diseases that currently have no approved therapies

* Ensuring sufficient funding for research and orphan product development

* Exploring ways to incentivize companies to create new drugs, biologics and humanitarian use devices and

* Providing an opportunity for Members of Congress, families and advocacy groups to exchange ideas and policy concerns

Please encourage your Representative to become a member of this important Caucus!”

Please write your local Representative and ask that they take part in this caucus. I have contacted Rep. Jay Inslee. Here is the email I sent him….

Mr. Inslee,

I am writing you because I recently heard of the newly-established “Rare and Neglected Disease Caucus.” I am hoping you will join this caucus. I am a mother of a 4 year old daughter who has been diagnosed with an extremely rare disorder, Fibrodysplasia Ossificans Progressiva (FOP). FOP occurs one in two million births. My daughter’s muscles and tendons will eventually ossify to bone and will eventually stop any form of movement in her body. I can only hope that one day there will be some sort of drug or gene therapy (if not a cure) that could help her and others who suffer from this crippling disorder. There is a need to raise awareness of these rare disorders. I do appreciate your time and please consider joining the new caucus.

Your constituent,

Suzanne McCloskey

For those who live in the United States, please contact your representative and ask that they too join this great caucus. You can go to http://www.house.gov/ and type in your zip code. Your representative will be listed. Most representatives have their own website. Find a “contact” area on the website.

Share on Facebook

We use Starlight Foundation’s Great Escape program all the time.  Once Erin was accepted with Starlight, we were added to an email distribution list that notifies parents of upcoming events.  So far this summer we have attended pre-screenings to movies, went to the University of Washington planetarium (which isn’t open to the public), and attended a few festivals.  Yesterday’s event was sponsored by C.A.S.T. for Kids (Catch A Sprecial Thrill).  It was by far our funnest event of the summer.

C.A.S.T. is all over the United States and they put on events where disabled or disadvantaged children can fish where they otherwise could not.  Everyone a part of yesterday’s event were volunteers.  From the medical students from University of Washington applying sunscreen on the kids to the boat captains were all volunteers.  We got up early and headed down to the Foss Waterway in Tacoma, WA.  There we met up with the group and we were assigned to Frank Blisswell.  Frank is an incredibly warm and personable man who spends three to five days a week fishing for leisure.  He’s retired and lives near Gig Harbor with his wife on private island.  He’s a grandfather as well and loves to take his grandkids fishing.

Frank took us out to Vashon Island where some other C.A.S.T. boats were dropping their lines.  We hung out in that cove for a while and wasn’t catching anything.  Over the marine radio one other captain told the fleet where he was and that the kids were catching flounders.  We sped off to our new location and dropped our lines.  All the boats around us were catching fish left and right.  Brennan suggested that they should bait their hooks with the fish heads we were given.  Frank promptly pulled out our bait fish and chopped off the heads.  Within minutes, Brennan caught his first fish!  As the fish was coming up close to the surface I told Frank, “Wow, that looks like a shark.”  He replied, “Well, that is because it is.”  This small shark is known as a dog fish.  According to Frank, dog fish is considered a “trash” fish because they tend to take the bait and are not worth keeping.  Even up until a couple of years ago, anglers would slash the caught dog fish and then throw them back.  Now the species is now protected so you are required to throw it back alive.  Frank, the wonderful grandfather that he is, told me not to bust Brennan’s bubble.  He said Brennan deserved to say he caught a shark because he did.

We were on the water a total of two and a half hours.  All together the kids caught three dog fish and two flounders.  All three of the kids were having such a good time.  They didn’t want to head back.  They really wanted to catch a fish to take home.  I am so glad they didn’t.  I would not know the first thing to do with it!

A local Kiwanis chapter supplied the lunch for all the participants.  As we enjoyed our lunch, the president of  C.A.S.T. gave out awards to all the kids.  Erin was presented with a plaque that has our picture that was taken just before we boarded our boat.  She was also given her very own fishing rod and tackle box.  Then Captain Frank presented the boys with one of his personal fishing rods.  It was the very rod that the boys caught some of their fish.

Like I said before, this was one of our favorite events.  The kids will be talking about their fishing expedition for a long time.  Thank you to everyone who put event together.  Your efforts were well worth it.  The McCloskeys were one of many happy families who attended!

Share on Facebook

I learned something interesting and useful this week.  I’ll tell you what I learned, but first, will back up a few steps and set the stage for explaining it. 

If you read my blog last week, you’ll know that Miranda took a nasty fall several days ago.  She had been outside with her daycare group, and to make a long story short, she fell and scraped her nose and got a big gash on her forehead.  This was a fall on hard pavement, so we worried about a flare-up of her Fibrodysplasia Ossificans Progressiva.  In hopes of preventing a flare-up, I gave her a course of treatment with Prednisone.  After that, there was nothing to do but wait the 6 to 8 days in which it takes FOP flare-ups to appear (if they are going to) on Miranda.

We’re now 12 days post-fall, and I’m relieved to say that only one flare-up occurred, and it’s on Miranda’s forehead.  While no flare-ups are good, the ones on the forehead are probably the “least bad” since they don’t cause any loss of motion, they tend to only lead to little bits of bone formation, and they generally don’t spread elsewhere (at least they never have so far for Miranda).  And, in fact, that flare-up is already starting to shrink down as the inflammation subsides.  This is good…  Crisis averted.

Also good is that the teachers from the daycare all had a meeting to talk about the fall and prevent it from happening again (actually, this was her first such fall in over two years at that daycare, so I think they have a pretty good track record).  All the teachers were reminded that whichever teacher is in charge of Miranda is supposed to be holding her hand if they’re walking outside on hard pavement.  As such, I had figured this event was over, and everything was resolved.

But…  Maybe not, as it turned out.  This past week, we had a meeting with the physiotherapist from our local school district.  This gal’s job is to make an assessment of each child with special needs to figure out what accommodations the school must make for the child when she or he starts school, which will happen for Miranda this September.  After we finished the assessment, which involved a bunch of hopping, toe walking, ball throwing and so forth, I had a chat with the therapist.  I mentioned Miranda’s fall to her, more to explain the cuts on her face than for any other reason.  I also said I was happy that the daycare was going to make sure all teachers knew about holding Miranda’s hand while on pavement.

Here’s the important bit - the physiotherapist then told me that she doesn’t recommend holding hands with a child who has balance issues (for convenience, I’ll refer to such a kid as an “FOP child”, though it applies to other kids with balance concerns as well).  I was puzzled, and asked her for clarification - why?  She then explained that there are two reasons.  First, if an FOP child is holding hands with another person, be it an adult or another kid, the FOP child has to coordinate her own balance with the other person’s balance, and this is harder to do than just walking by herself.  If the other person trips or stumbles, or starts running, then the FOP child has to adjust her own balance to accommodate for this.  That’s hard for kids with FOP limitations to do, since they have limited trunk movement.  And so, the end result is that the FOP child is actually more at risk of falling when holding someone’s hand than when walking by herself. 

The second reason for not hand-holding is that if an FOP child is holding an adult’s hand and does start to fall, for whatever reason, there’s a good chance the adult may instinctively react by jerking on the child’s arm, or worse even, by losing her own balance and falling on top of the FOP child.  Obviously, neither of those things would be good for an FOP child.

And so, rather than holding the FOP child’s hand, the physiotherapist recommended that an adult walk very closely behind the FOP child when in risky environments (ie, on hard pavement), and keep a good watch.  If the FOP child does trip, the adult can then reach her own arms out in front of the FOP child’s chest and prevent the fall.

(NOTE - when Miranda fell recently, she hadn’t been holding an adult’s hand, but she was holding the hand of another little girl.  When the girl started running unexpectedly, that’s when the fall happened.)

When the physiotherapist explained this, it was like a lightbulb flashing on above my head.  I instantly felt the correctness of what she said.  I KNOW there have been times when Miranda probably fell because she couldn’t correct her own balance when holding my hand.  Also, I KNOW there have been times I’ve instinctively jerked on Miranda’s arm when she was losing her balance.

This was really an epiphany for me, and when Miranda goes back to daycare this week, I’m going to ask them to change the protocol for walking with M.   I think this is important. 

(On a side-note, I will in fairness say that this rule might be less applicable for a toddler.  Kids that age might need to be holding an adult’s hand to prevent running out into traffic, which would be more dangerous than falling…)

In the end, of course, no system is perfect, and I know Miranda will continue to have falls, though hopefully they’ll be few and far between.  It’s not always possible to prevent falls, because we’re all humans and humans make mistakes.  However, I think this is a good tip for increasing safety in the context of FOP.

Here's Miranda with her paper Superman puppet. Much like Superman, she'd rather run around and be speedy than worry about stupid stuff like falling.

Share on Facebook

So far our summer has been low-key.  In April, I submitted Erin’s profile to Make A Wish Foundation (MAW).  I really need to send a shout out to Dawn Earl, ARNP (Erin’s case manager at Seattle Children’s Hospital in the Genetics department).  Dawn received the paperwork and submitted it back to MAW the same day.  I am proud to say Erin was accepted as a Make A Wish child.  Why MAW now and not when she’s older?  Erin loves the Disney princesses (seriously, what four year old girl doesn’t?).  Erin literally told us that she wanted to meet the princesses.  After hemming and hawing on the topic, Alan and I decided this was a good time.  We took into consideration that Erin has most of her mobility right now and she will be able to ride most of the rides at Disney.  So she won’t be able to ride Space Mountain…oh well!  FOP is very unpredictable and as a family we would truly appreciate some good luck right now.  Shoot, we would love some good news at this point…so our upcoming Disney trip is extremely precious to us.

So…Erin’s been accepted as a wish child…two weeks later we meet the two volunteers assigned to Erin’s wish.  Here is Cherelle and Eun Ju on the day they came to the house so Erin could officially declare her wish.

Cherelle and Eun Ju came to the house on May 5th armed with goodies for all the kids.  Transformers for the boys and Disney princess stuff for Erin.  Since then, our trip has been booked for September and our flight reservations have been made.  This past Sunday Cherelle and her daughter stopped by to give us five brand new suitcases for the entire family.  Erin was very surprised to get a Barbie doll that was made especially for Make A Wish Foundation during their visit.  I think this is THE Barbie doll that will catapult Erin into playing with Barbies.  That night she had all of her Barbies, which included ones without clothes and ones without hair, all lined up on the couch playing “school” with Erin as the teacher.  Thank you Cherelle and Eun Jun…it really is the little things that spark the smile in a child’s face.

Needless to say, Erin is a very happy girl right now.  She’s telling EVERYONE that she’s going to Disney World to see the princesses.  My poor daycare children, I am sure they are going home telling their parents they want to go to Disney as well.  I am very grateful to the company Esterline in Bellevue, WA for sponsoring Erin’s wish.  With the money they have donated to MAW the McCloskeys will spend a week at Disney as and let Erin be a “real” princess (not just a Mommy and Daddy princess).  Thank you to Esterline and thank you to all those who donated to MAW and who have donated their airline miles to make a child’s wish come true!!

If you would like to donate to Make A Wish, click on the logo and you will be directed to the Make A Wish Foundation website.

Share on Facebook

Early this week, I got a phone call from the daycare - “Come pick Miranda up, she’s had a fall and is crying!”  This is the first time this has happened in 2 years of daycare attendance, so I figured it must be serious.  When I arrived, I found a sobbing Miranda with a gash on her forehead, and a big scrape on her nose.  I took her home, cleaned her up, bandaged her and gave her a dose of Prednisone.  Prednisone is the only known drug which MAY prevent a flare-up of Miranda’s Fibrodysplasia Ossificans Progressiva.

It looked pretty bad, and it was.  I felt kind of sick about it, and Miranda felt very sorry for herself.  That day, I found out how the accident had happened…  It turned out she had fallen on hard concrete.  Without going into too many details, it involved Miranda’s headband having ridden up on her sweaty little head in the July heat, a new teacher who hadn’t read the care plan and didn’t know she was supposed to be holding Miranda’s hand while walking on pavement, and a classmate enthusiastically pulling Miranda’s hand and trying to run with her.  (Aside - the daycare had a meeting later that day with the social worker in charge of Miranda’s program to ensure they have a plan for making ALL new teachers aware of the Miranda safety plan rules.  We’re satisfied the incident was taken seriously, and that the error is unlikely to be repeated.)

Miranda’s had major falls like this this before, though thankfully they’re getting more rare as she grows older.  Whenever it happens, we spend several days anxiously watching her to see if Prednisone will be effective, or if a new flare-up will result.  Miranda almost always falls on her front, as she did this time, which makes me worry that she’s squished her arms and will develop flare-ups which further limit her already restricted arm movement.  Or, maybe even worse, that she’ll end up with a flare-up which locks her jaw in place.  In our experience, it takes about 6 to 8 days for a new flare-up to appear, so we knew we had about a week to watch for flare-ups before knowing we’re in the clear.

So, we could sit and chew our fingernails and worry, and bring everything to a halt…  But, what good would that do?  None at all.  If FOP is going to happen, it’s going to happen, so we may as well go ahead with whatever plans we have.  In this case, we had planned to try camping this weekend, for the first time since either of our kids were born (Miranda is 5, and her brother Owen is 8).  We didn’t even consider calling it off.  Instead, we simply packed up as we had planned, and drove to Cultus Lake Provincial Park this past Friday night.

It turned out we had a really great time camping.  We tried out our new tent, and found that it worked just fine.  Over the next day and a half, we went swimming in the (cold!) lake, played mini-golf, ate ice cream, roasted marshmallows and made smores, told ghost stories (kid-friendly ones) and went to a waterslide park. 

Miranda on the beach at Cultus Lake, her favourite part of camping (despite the icy cold swimming water!).

What a wonderful getaway it was…  This was just a short trip, but it was so much fun.  This is not to say that we’re not still watching our sweetie for a tell-tale FOP swelling, because we are.  But, we’re doing our best not to let the frustrations of FOP interfere with doing what we want to do.  It’s the difference between “coping with our FOP child” and “enjoying our Miranda, who happens to have FOP”.

Me and my gal by our tent.

Share on Facebook