The things you learn!

One of the comments the school post on Facebook got:

Your daughter used to entertain my daughter in the speech waiting room at the [unit where she got PT] last year while my son was there for speech..She sang us songs, did ballet, told us jokes..such a warm, friendly little girl.  I have a son in first grade at the school and another entering next year.  If she ever wants a playdate, she is welcome  anytime..and my daughter would be thrilled too!

My little girl is awesome!!

Best Dad ever - builds a mountain for our first-time sledders!!

I'll try and post video later!

Can of worms!

It seems that our medical lull may be over, partly of our own making, but because so many things are inter-related.

Before we can really move forward with smile surgery, we need to address this possible sleep apnea issue, which starts with a Sleep Study.  It's been a few years, but it will not be fun going back in and getting all the probes stuck all over Emma and trying to sleep in a hospital room for the night.

Worst case scenario, she has obstructive sleep apnea.  Then comes diagnosing the problem, which may be her "enlarged" tonsils, requiring removal (read surgery!).  After a recent high profile case of a girl going into a coma after this routine procedure that causes some anxiety.  But you roll the dice with any surgery really!

Then we would be free to move forward for smile surgery.  Now, the community consensus seems to be that it is a huge risk to have it done here because our surgeon has not done the Labbe technique before (see yesterdays post) or the other method on someone with Moebius.

So, I contacted the surgeon in Long Island, NY who did the Labbe procedure on the lady in the video in 1985 and we will have a phone consult, then maybe go for a visit.

On the flip side, I had the pioneer of the original "smile surgery" (who is based in Toronto and will not do a phone consult) recommend someone local - and he gave me the name of two guys in New York also!  However, this doctor does come to the conference in July, so we could meet with him there - though we were thinking of getting the surgery done in the summer!  That is only 6 months away and so my mind is racing on how to fit all this stuff in!

We are not really considering finances at this point, assuming that insurance will cover the procedure and a "local" hospital will dramatically reduce other costs.  We can always have a fundraiser if need be!

Emma seems blissfully unaware of the mental strain this puts me under - and I am glad about that.  I don't want her to ever feel like she is a burden or inconvenience.  We'll try and work out all the details for her.  

One thing is clear, that she wants it.  When she saw the video she said she wanted a smile like that.  She told my parents that she really doesn't like her smile because it looks like a frown.  this is great - I know many other kids don't talk to their parents about it and I think probably feel worse than we realize.

Just today, one of the young women with Moebius who is working hard to promote Moebius Awareness Day on Friday wrote this in a Facebook post: "I heard this guy go "there's that weird girl" while looking at me."  I don't think she has had the surgery because people who have seem to use photos of them smiling.

While I remember being teased at school and feeling very insecure and vulnerable, it was passing.  This is a lifelong thing.

Please keep praying that we make the right decisions, for God's will.  We will take it one step at a time.

The aftermath

No more steps!!!

At least 11".  Officially the most big snow storms (6"+) this early in winter, ever [recorded]!!

Epic day!

Today was our scheduled consultation with Emma's plastic surgeon - so of course the forecast called for 6-12" of snow!  Schools were closed, but the hospital was open and we confirmed we were still coming.  About 10am they called and asked us to come in as early as possible to avoid the worst of the snow, which started about 9:30am.

As I pulled out of the driveway there was a light covering of fluffy snow.  The roads to the highway were pretty clear, but the highway was a little thicker and traffic was moving slow.  I had to pick up Scott from work, and head downtown.

The roads were horrible, and the windshield wipers kept accumulating ice, but we made it there about 11:45am.  Our appointment was scheduled for 1:30pm, but we went right in!

Emma was very good, waiting patiently for the doctor...

 

I asked her how she felt about being there (having explained the night before we were "just going to see if they can help her get the smile she wants").  She was excited and explained that she wants her smile to look like everyone else.  I told her that might not be possible, but at least it might go up instead of down.

A few weeks ago she was asking her friend if her smile was any different, better.  She clearly thinks about this more than we know, and we want to respect her decision.  It is hard for any kid to comprehend the implications of surgery, recovery and therapy - but then if someone told you they could help change something you "really don't like" about yourself, maybe there is limited downside.

The surgeon came in and referenced the emails we exchanged before.  There are two main options:

 "Smile Surgery" is traditionally the transplant of a nerve from the leg into a re-directed muscle that aids with jaw movement.  (there are two jaw muscles, so they can move one to connect to the mouth.)

This is a two part procedure - one on each side, 6+ hours each.  Success relies on the nerve growing in to the muscle and functioning.  One side may work differently.

The Labbe Technique, (as done in Norway a few months ago - remember that post?) moves the temporalis (temple) muscle on each side down, and moves the jaw muscle to the mouth.  It is a one-time procedure for 6+ hours, and will leave scars where "laughter lines" would usually be.  It also has an ear to ear scar over the top of the head (whereas the other method leaves scars by the jawline.)

You can view an interview with someone who had this done here:

http://video.uk.msn.com/watch/video/the-woman-who-cant-smile/2uxdvrpks

Emma seems very keen to go ahead, asking why they hadn't done it when we were leaving!  I could push the danger of surgery and potential pain after with her, but I am not actually concerned since she has always recovered well.  But don't get me wrong, the idea of any surgery scares me silly, even "routine" procedures carry huge risks.

If it was left up to me, I would not get it done.  I think she is beautiful and I see her smile clearly.  I don't want to risk her life for something so elective.  However, it is not just my decision, it's not my face.  And I can understand how this would become a big thing for her.  People with big noses, sticky-out ears etc all can suffer huge emotional stress and they are able to communicate non-verbally.

And so we pray, for wisdom, for guidance and direction. 

Meanwhile, on the way home...

 

Fancy cars aren't good in the snow!!

It took us 2 hours to get home, approximately 12 miles!!  The roads were snowy and every person was trying to get out of the city!  We were all hungry, having neglected to eat lunch amid the change of plans.  Scott had his lunch cooler, in which we found an apple (to be shared by me and the kids - primarily me since they both wolfed down a bag of popcorn before we left the parking lot) and celery, which Toby was hungry enough to try (until the apple came out!)

Who knows what tomorrow will bring, but we had to drive through 5 inches of snow to get on the driveway!!!

If you see a person with a disability or facial difference, please do not tell your children not to say anything.

This teaches them that we should ignore people who are different.  When a simple question and answer will help them understand they don't need to be afraid.

So, instead, say that yes, there is something different about that person, and that is OK!  If it's appropriate, ask the person or the parent about it.  I feel sure they prefer that, than staring and pretending they aren't there.

When kids have asked me about why Emma seems to be staring at them and I explain her eyes don't move or blink like theirs, they say "ok" and move on.  Otherwise they might dislike her because she seems to be rude or aggressive.

We see children (strangers) watching Emma, glaring at her because they can see a difference but maybe don't know what.  They may assume she has lower intelligence or is unhappy.  They avoid her and ignore her when she tries to play with them.

Oh, how I wish they'd just ask.

Check out one of Scott's old pictures.  You can tell which one is him - looks just like Toby!!

Quiet Day Off

Yesterday... 

Emma had to be at the hospital by 8am for an appointment with ENT.  This was a two month check in to see if she might need tubes re-placed.

Good news is her ears look great and the tubes are gone, so free and clear swimming!

As I broached the issue of possible sleep apnea the dr reluctantly told me her tonsils are enlarged, though likely as big as they will get. That could have something to do with her breathing, exacerbated by congestion at times.  She was hesitant to go through a sleep study if it is periodic, so I'm going to be on observation duty.  

(Note: this is now simmering in the back of my mind, constantly, with everything else!!)

Then it was back to the burbs and she was at school for 9:30.

Toby and I went grocery shopping, then back to pick Em up at 11:30.  We hit the store for a birthday gift, and then it was over to my friend Sabrina's.  I dropped Emma there for the afternoon, raced Toby to school for 12:30pm, then headed to the dentist.

I had my first two [tiny] cavities filled, which took about an hour.  I had just enough time to get home, switch the wet laundry to the dryer and put on a load for wash.  Then I went back to collect Toby at 3pm!

We went to Sabrina's, where we stayed for pizza and birthday cake as it was Evie's 5th birthday (hence the aforementioned gift!).

Back home at 5:30 to hand off the car to Scott (because his is in the shop!), who then went up to help with construction on a new building at church.  We got Emma's homework done and the kids got in the bath tub at 7pm.

And that was my day "off".

Just in case you were wondering what I do with all my free time!!

So Brave!

Update

So, "We usually think of less than 20 seconds as normal, but that is more for infants than larger people.  In adults, 30-45 seconds, or perhaps up to a minute, can be normal."

Who knew?!!

Anyway, picture me, watching Emma sleep tonight, timing her breathing, LOL!  I think we're within normal range.

You know how you when you get over one hurdle, you leave it behind you assuming it's done with and you'll never see it again?  But it really depends on whether you are running the 400m or 800m! 

A few years ago we left behind obstructive sleep apnea.  I think Emma was almost 3 when she was cleared of OSA, and by cleared I mean declared "borderline".  We said goodbye to the nursing staff that came to the house every night.  We put the CPAP machine at the back of the shelf in the closet, to be brought out one day in the future as a relic of forgotten time.

However, Scott and I have both maintained some concerns about Emma's breathing at night.  There are many instances of her in bed with us or when she first nods off at night and we are still laying with her (we each pray sing and cuddle with one of the kids most nights, until they fall asleep, or it becomes clear that they will not do so while we're there!), when her breathing is more like snoring and there are pauses. 

For example, she came in to us at some point last night and I let her in the bed.  I'm not sure how much sleep I got after that as I tried to ignore the snores and pauses.  I didn't do well at it.  I kept repositioning her, nudging her to breathe as I have many times before. 

With sadness I emailed her pulmonologist this morning.  I don't want to do a sleep study, but I can't ignore it any longer.  There's really no conclusive way to know, but that's the best.

I'll keep you posted!!

Bad weather

If you are checking the news reports on weather in the NE US you will know it's been crazy.  We had snow Thursday night, cold temps the next couple of days, around 19f, with freezing rain on Saturday night.  (32 fahrenheit is 0 celsius!)

This morning I checked the weather on my phone and it is 61f at 7am!!  Tomorrow we go back down to 16f, with wind chills lower than -10f.  And we aren't even getting the worst of it.  Further north and west is far worse. 

I am so thankful that we have central air to keep our house warm (even if the dry heat is making  Benjamin's fur static!!). 

Instead of worrying about us, please pray for the thousands of homeless people who have no place to go at this time.  Many will likely die.

We are so blessed, and even though you and I work hard for all we have, it is not without a measure of God's grace that we are able to sustain our lives. 

Tried something new!

Random Christmas Pictures

The night before...building the bikes!!

The magic of Christmas presents!

This stuff was not new, but it's been in the attic, so being able to play with it was a treat!

Coloring pack from Auntie Nicola & Uncle Jon!

Marbles and tiny pieces - Doh!

Helping me make jam tarts, one of his favorites!  Not as good as Gran's or Mum's, but good enough!

My roast potatoes were perfect though!

Mascarpone cheese instead of clotted cream - one must adapt in a foreign land!!

The castle lasted one day!

My three gifts: Benjamin, pajamas from Toby, necklace from Emma.

I wasn't a fan of the necklace, and Scott said it wasn't Emma's first choice, which sounded more my style.  So she and I went to swap it, and she'd had it right the first time!!

Check out our temps...

Snow day

About 6" of snow fell from 5pm last night, closing the school and coating the roads.  Scott stayed home because heading to work if no one else would be there is crazy!!

Long weekend it is!!

Settling in

Benjamin is becoming very comfortable around us, well, Scott and I!  He still runs from the kids.

After they go to bed he will follow us around, and seek our attention.  Tonight as we worked out he was licking us and very nearly got stomped!

He enjoys running around in circles at high speed, going beind the curtains, and lounging...

He's unpredictable with the potty, but when he's being supervised he does great - like any baby!!

It's definitely work, but lots of fun and hopefully he'll get more comfortable (and disciplined when he's fixed!).  

Kind of like a cat, but without all the scratching, climbing and freedom.

Happy New Year!!

Here's hoping that you all find joy and peace this year.

Our NYE was fun, we had some friends over from about 6:30, and the 6 kids had a blast in the basement.  Everyone made it to midnight, although little Bella didn't get much past it...

Sabrina and Brian took on Scott, Katie and I at Cranium, and lost twice!

While Benjamin relaxed (and hid) by the hot air vent!  The equivalent of laying in front of the fire!!

As I look back, 10 years ago I would've been nursing a hangover after a night out drinking with friends, only to feel incredibly lonely.  What a journey it's been, and I am certain I'm in the right place.  

So many great things to look forward to this year; Disney World, Moebius Conference in DC, new position at work. My goal will be to look forward BUT live in the moment.  I miss too many opportunities to see God revealed in my life by being too focused on the next big thing.