My man!!

It goes without saying that I am incredibly proud of Scott for so many things, but here I am shouting about his carpentry skills, though I think craftsman is more appropriate!

Check out the benches he built for friends of ours, designed by him!  

Some of the finer details...

Drawer in each end, and an electrical outlet!!!

So proud!!

MSAD

Moebius Syndrome Awareness Day may be 6 months away (January 24) but after the conference we felt like we needed to do a better job for it next year!  So we took advantage of the discounts on conference weekend and ordered our shirts!

They came on Thursday...

Really nice shirts, long, and soft, and about $10!  Can't beat that.

Of course I just realized the one says 2014!  Oh well, we'll have to wear them out!

All things have purpose

Everything happens for a reason, and maybe if you don't believe that, you can agree that most situations can be used to learn lessons.  Today was a culmination of things.

Before we left for the pool, the kids were all "sun-screamed" (Toby's hybrid of sunscreen and sun cream!) and in the kitchen while I got a few things together.  Next thing I hear crying, and as I approach Emma comes towards me, eyes red and says "Toby made me spray sunscreen in my eyes!"

There was no split second needed for me to know that this was twice as bad since Emma does not have the reflex to blink when something approaches her eyes.  I have since concluded that she may have turned her head on contact, as it would not have felt pleasant.  Indeed, her eye balls looked pretty red and she complained it hurt.

Showing remarkable restraint, I [only verbally] flipped out and grabbed some paper towels to sponge her eyes with water.  Somewhere in the back of my mind, whenever "put drops in" came up I knew that mixing chemicals would likely be worse!  So I continued with water, and Emma cried - concerned that I was mad, which I was, and because I was yelling at Toby to go and sit in time out on the stairs.

We have a rule in our house, that if you tell someone to do something that you know will get them in trouble, you are equally, if not more culpable for the foolishness.  Since Emma was dealing with direct consequences (and my groanings of "you could have blinded yourself"), I knew time out was not necessary for her.

Toby was astounded to learn that we were still going to the pool, despite the complete idiocy that they had shown.  That was mainly because to stay home would have been punishment for me given my now gray mood!

At the pool we had a great time with friends.  It was hot, water felt great, blah blah.  Emma saw a new friend of hers, with some other girls we didn't know.  Emma took off her snorkel mask to say "hi" and that's when the longest hanging booger came out of her nose!  Now looking like a drowned rat is never flattering, but add to it that grossness and I think I saw the other girls physically recoil.  It broke my heart.  Emma is so oblivious to the image she portrays, and I desperately want to protect that innocence, but still want her to have a little street smarts!

Later, as we waited in line for an attraction at a town event that was taking place near the pool I observed a little girl staring at Emma.  She looked fairly expressionless but I was not liking the way she was staring like Emma had two heads!  Look how "normal" she looked...

Eventually I had to intervene (though Emma was oblivious, it was just rude!) and saying "hi" did not work, so I waved at her and said "hi".  Only then was she able to turn away.  Again, broke my heart.

Anyway, later on as I put her to bed (here's where it all comes together!) we were talking about making mistakes, and making stupid choices (yes, I called her actions "stupid" though we never use the word, it was appropriate to describe her utter foolishness!).  She asked me if I had ever made mistakes!  Love her, she actually thinks I'm flawless.  Well, maybe not since she was able to suggest a couple things as I pondered it n my head!

What I chose to tell her was that when I was a girl, I made the mistake of staying friends with girls who were mean to me, because I was scared I would not have any friends.  I did not want to be lonely.  I went on to explain that I didn't understand that even without those friends, I would find others, and even still, I had my family and Jesus.  

Emma responded with a "bible point" that was similar to ones she learned in Vacation Bible School last week.  She said "even when you don't have friends...Jesus loves you!"

Most adults don't seem to realize that that kind of understanding is the very heart of God.  He longs for us to realize that when everything else is in ruins, He loves us - and that is more than enough.  That is everything.  Often, when life is so good we don't have tough times, we have no need to consider what we are left with when all the people are gone, when all our stuff disappears and we have not been perfect.

Jesus loves you.  

~ one proud mom.

Random summer pics

Fun with our friends!

Rope Braid!

 Fun straws!

Summer relaxing

All tuckered out

Scott giving all the kids a ride in the pool!

Toby and "girlfriend" Evie, playing parents!

Emma writing out her VBS theme song!

High-flying!

Playing with sawdust, a real carpenters girl!

With Butters, our friends dog

Giving Daddy trouble!

More pool antics with the twins and Delaney (Emma's school friends)

Toby and Addi, one of Emma's twin friends

Toby with his posse of girls!

With Tigan, the other twin!

Emma showing love to Monkey and Baylee - amazing how comfortable she is with animals now!

Compassion

We were in the pool last night, when Emma asked me if she could take a look in her piggy bank tonight. I asked what she wants to buy and she said "I don't want to buy anything. Did you know there are kids in India who don't have clean water to drink? They just have dirty muddy water. I want to give some money to help build a well for clean water."

This is the cause that they are raising money for at Vacation Bible School this week.  I told her she could give as much of her money as she wants!

She proceeded to act out the story of a boy with no parents, who takes care of his grandparents and brings them dirty water.  And then tell about five other people (strangers) about the little boy!
 

Normally I will tell her to back off because she loves to accost random people, but I figured that her message was important!

I asked Toby if he wanted to give any of his money. He said "no, I don't want to give them any of my money."

The Appeal

Today was the day.  We had been working toward this day, praying about the outcome.  To be able to give our daughter the smile she longed for, the way we felt best, by the best doctor.  We asked the Lord for wisdom in making the decision as well.

Our initial application, following our consultation in New York was denied.  We submitted a grievance over the decision and sent a detailed letter about why.  The appeal hearing was scheduled for today at 1:30pm.  I was planning to attend and maybe bring Emma for the human face of their decision.

And then we went to the Moebius Syndrome Conference.

We never expected to hear anything new.  We assumed that we would have been offered any other treatments that are available for Moebius Syndrome.  We ASSUMED that the doctors we still see (which is not many) actually know about what's available.

When did I forget how rare Moebius Syndrome is, and that there is no-one advocating for Emma but us.  And if not us, no-one.  So, how did I get so complacent that we were done, nothing more was available or even possible?  Maybe I was just happy to get to a place where things are fairly "normal", that I was too tired to push for more, for the best.

Well, no point in lamenting my short-sightedness.  What we learned is that there is more available for Emma, that surgery is not the only option, may not be the best. While therapy will take longer, and may not be as dramatic, the effects could have a greater impact on Emma's quality of life and communication.  And surgery is still an option down the road.

Around 2:15pm this afternoon I got an email from the surgeons office.  The surgery was approved.  But the decision was delayed just long enough for us to get a glimpse of a world of opportunities we did not know was there.    And we have decided that we no longer want to get the surgery for Emma, at this time.  I guess I'd better let the surgeon know!

I have told Emma about our decision.  She was certainly disappointed.  I tried not to get her hopes up about what therapy will do, especially since we don't know yet if we are going to be in the trial, but I have been told that there is more than one option to help.  But until we find out about the trial, and during the trial if approved, we can not do anything!  It would impact the results, and so we wait. Again.

Disney Jr has a new campaign for kids - "the power to do good".  This morning Emma announced she has the power to do good by helping feed the bunny, which she did.

But then I overheard her telling Toby "I have the power to do good.  That's what the TV says and I want to do what the TV says!"  

And that is why I am obsessive about vetting what they watch and being overly cautious!    I have already told them that in the fall there will be no TV before school, which is what we do on Sunday - no TV before church.

Knowing when to let go

When I was a kid, my mom probably dreaded hearing the words "is this your daughter?"  She's shy, I am not!!

I hear it myself frequently and I'm always pleasantly surprised, when the person in question goes on to say "she came up to me, and tell me how much you love my nail polish", or "my hair", or "came to see the baby".  

Emma is definitely not shy. She loves to engage in conversation with complete strangers, and is not aggressive necessarily, and always loved to say things positively to people. Yes she does ask some questions, which could be taken either way but I think most people have a tendency to think that a little child is innocent, which she is. 

I find it hard when we are at the pool, for example, because she will approach anyone, especially moms with kids.  I am never sure if they are humoring her, or if they enjoy the company. 

I need to find a balance because I don't want to wash her wonderful outgoing personality, and friendliness.  But it's close because I worry so much about what other people think, that I tell her to pull back.  

Think about it.

Before this weekend it never occurred to me how much people with facial disfigurement's are represented in the media, and how much that plays into our subconscious impression of people who don't look "normal".

People with facial disfigurement often represented in books, movies, and TV shows, as being either villainous, sad and pathetic or to be picky, or not really human, like trolls or aliens.

People with Burns, acne, skin conditions, congenital facial disfigurement, or any number of things that can make their face seem unusual, I'm not only battling against the airbrushed idea of perfection portrayed by Hollywood, but they'll also having to fight against the preconception that they are somewhat unlovable, sub human, or just in need of a surgical fix.

We wax lyrical about how children I talked to hate, about how racism and sexism is cool and how we need to prevent that from happening. But that we also teach our children about physical differences, about those two fear those who look different or are not the same as them. There's a big difference between a healthy fear of strangers that a child might have, and a perception that some people are a bogeyman. Old fairy stories tell of monsters, but also the TV show that we let our kids watch they do the same thing. Just watch some cartoons and see how the representation of people who have facial disfigurement is given. A culture of name-calling and laughing at people is created at such a young age.

As an adult, the chances are that you would deny any level of this kind of perception in yourself. But the truth is we all have it, we aren't even aware of it. And that is one of the reasons why we will work so hard to, yes raise awareness for conditions like Mobius syndrome, but also to fight for equality and for compassion and inclusion of people who feel otherwise sidelined by society. People who are denied a fundamental need to be accepted, and valued.

In the past there's been so much misunderstanding, and mistreatment of such people. I'm sure you can probably name individuals, but are we really any different than we were then. Just using social isolation instead of physical incarceration.

I believe that my daughter is intrinsically beautiful. With or without her syndrome there will be people who agree and those who don't! That's ok. I just wish we could teach our kids that whether it's facial disfigurement, "fat", or intellectual differences, people deserve love and respect. Not name-calling or isolation. When we can't manage that, we need to check ourselves.

Check out the conference video, and spot Emma!

Check out the first in a campaign by the British Moebius folks:

Emma saw this and said it made her happy.  She also asked if Sophie could come over and play!

Following the comment I made on their Facebook post, they asked if we would be willing to let them do a poster with Emma!!

We're going to be doing far more for Moebius Syndrome Awareness Day 2015, so stay tuned!!!

Moebius Syndrome Conference 2014 (extended version)

On Thursday evening we packed up the car to head south to Maryland, outside of Washington DC, for the bi-annual Moebius Syndrome Conference.  This would be our third conference.

When we left the conference in 2012 things were a little difference than they were this time.  For one, we had never really talked to Emma about her syndrome, and two, we were not on Facebook so the only people we knew were those we had met at the conferences and became friendly with, which was not many.

Since then we have made an effort to give Emma a name for the reason why her face does not move like ours.  We have educated as many people as we could and tried to raise awareness about Moebius Syndrome in our community.  We have also joined Facebook, which meant I could join the Moebius Moms group and "meet" other moms in a private forum where we discuss our fears, questions and encouragement.

So the anticipation for this conference was more of a family reunion than a "conference".  Our perceived purpose was to connect with people, and help Emma forge friendships with kids who will be able to relate as she gets older.  We were not expecting to learn anything "new".  

When we arrived at the hotel we sat in the lobby for a few minutes and not far away a woman sat down.  She had Moebius Syndrome, but also was missing one hand and had only a couple of fingers on the other.  The kids noticed.  She also had really short hair and no make-up, so Toby assumed she was a man and said "is him's hand broken?"  I was not prepared with an answer!

I tried to explain to the kids that she was born that way and it was ok.  I suggested they say hi, but they didn't.  Right after I hit Facebook and asked the other moms what I should say, and got some great advice from moms with kids who also have limb deformities.  One thing I made sure to pass along was that it doesn't hurt the person - I'd never thought about that!

Friday morning was open because the conference didn't start until 1pm, so we took the kids swimming in the pool which they loved.  At one point a lady came in with a little toddler girl, with Moebius Syndrome.  She was so cute, little glasses and curly pigtails!  Emma commented "she's got a smile like I did when I was little."

We had lunch with Kendall, who had come to stay with us over my birthday, and finally met her husband and baby.  Lifelong friends who we would never have met! It's funny how Facebook can genuinely foster real relationships.

The opening speaker was an English man from Changing Faces in the UK, an organisation who is working for equal opportunity for people with facial disfigurement in society.  That is both working to build awareness and acceptance among the population who do not have burns/skin conditions/congenital deformities or other issues to be comfortable with people who do.  You probably aren't aware that you stare or avoid social interaction or subconsciously discriminate, I may do it too!  

But secondly they are helping people with disfigurement overcome their emotional and social difficulties so they can be active participants in their life.  

Go to changingfaces.org.uk for information on how you can help.

We had three sessions that afternoon:

- smile surgery.  We went to the talk by the pioneer of the gracillis muscle transplant procedure, just out of curiosity.  Dr. Zuker is there every year, and we made an appointment to see him just to confirm our decision to go for the other procedure, the temporalis transfer!

- Mom/Dad discussion groups.  An open forum for parents to share, seek advice and encourage each other.  I have to say it sounds like Emma is on a great path because she is so outgoing and self-confident.  So many of the other kids are painfully shy or introverted.  As we heard before, that makes it difficult for them to participate in society.

- essential oils.  Sounds kooky, but is really an interesting option for health and healing.

After dinner there was nothing scheduled, so we took the kids to Dave & Busters, and brought Jose with us.  Jose is 26 and from Guatemala, so Scott was happy to reminisce about his mission trip there a few years ago.

Saturday was a long day.  We started out in a session on a new kind of speech therapy.  I had seen some stuff on Facebook about it and it looked like it offered some incredible results.  We saw pictures and video of individuals with Moebius who had this therapy and the results are nothing short of amazing.  Full lip closure and clear pronunciation of b, p and m.  Oh, and real spontaneous smiles.  Yeah.

We were sold.  Trouble is the therapy has to go through an official trial to be approved and accepted by the governing body of speech therapists.  To participate in the study individuals must not have had surgery or any other intense therapies.  Everything we heard was setting off alarm bells in our minds.  What if the therapy could help her lip closure and speech, which is not at all guaranteed with surgery, and a natural, reflexive smile?!!

Then we went to a session on neuromuscular retraining.  This involves helping individuals identify the actual muscles involved in facial movement (for a smile it's cheek muscles, not the lips) and learn how to activate them.  This is for older children or adults, and is often used following smile surgery.

Our mind was being blown!  But no time to think - we had an appointment with Dr. Zuker to "grill" him on the gracillis transplant to make sure we were making the right choice.  Before we go to him though, we ended up with the therapist who had spoken on neuromuscular training because her appointment had not shown up!  She was immediately able to tell Emma to move her mouth in a way we'd never seen, by using the diagram she gave us of all the muscles.  Sure, the movement was down, but it opened our minds to more possibilities.  The therapy is only for older kids because it requires a lot of focus and Emma was being a little agitated in the appointment due to boredom, so she showed why it would not be good yet.

Then we met with Zuker, and the doctor who is taking over his practice as he retires next year.  We were pleasantly surprised by the man who had always come across as fairly rude and arrogant.  I think he is, but was engaging his bedside manner!  Anyway, the doctor with him examined Emma's face and said something that really got our attention!  He said her temporalis muscle, the one we are planning to move to power her smile is really pretty small.  That's not good.  Maybe it's her size overall, but still!

We asked outright why they do the surgery the way they do (muscle transplant, two procedures etc) instead of the other way that we are pursuing.  Dr. Zuker explained that he does not like to make scars on the face (maybe something I'd been downplaying in my mind) and he said it was harder!!

We were at the place where we were at the point of deciding not only to wait on surgery altogether, but if we did, doing the gracillis transplant!  (Still an insurance issue, but not the one under appeal!!)

Later that day Scott met a woman who had the temporalis transfer done 20 years ago.  She has dents in her head where the muscle was moved from.  She was also pursuing the gracillis transplant! 

That afternoon we headed to meet the therapist conducting the research study that would give Emma the ground breaking therapy for speech.  We applied to participate, and if accepted we will take her for therapy 3 times a week for 3 months.  Following that, the therapist would be trained and given all the tools to continue the therapy.  And that means no surgery until the study is over.

So much to consider.  We prayed that God would lead us, and give us wisdom.  We assumed that our choice was simple - which surgery!  But we met many individuals who have had great success with therapy alone - we had not considered it because she no longer qualifies for educational speech therapy, and the existing methods can not help her anymore.  But this is surely preferable.

In fact, had the insurance approved the application 3 weeks ago, we may have already had the surgery done.  But right now we seem to be in agreement that we will not pursue the surgery at this time, and instead pursue more therapy.  It will be much slower in terms of progress, and may not even yield the progress we would hope.  But there is no rush on surgery, it seems and we would rather see if we can help what is there, before using surgery as a last resort. 

We were able to spend time with lots of people we knew from prior conferences and Facebook.  We had dinner on Saturday night, before the talent show, where Emma overcame her nerves and gave a wonderful performance of Let It Go.  There were many other performances and while they varied, Emma really wowed with her ability to just remember all the words of the song, let alone the inflection and rhythm she maintained.  We couldn't have been more proud, and though Toby slept through dinner, the talent show and following disco, he had been excited about seeing it!

We said our goodbyes and headed out on Sunday morning, skipping the final day to attend an important service at church.

Intense, overwhelming, wonderful.

The Talent Show

Emma performed with gusto at the talent show last night, at the 2014 Moebius Syndrome Conference.  She got up in front of over 100 people and sang Let It Go with incredible volume and clarity - which might not seem like a big deal, but are both hugely challenging for many people with Moebius Syndrome!

We are so proud.

Preliminary results

So, the doctor who ordered the sleep study last week is on vacation!  However he hid have his assistant look at the results to put me out of my misery!  Here's what she said:

Pretty normal study. Oxygen saturations were good. A few snoring episodes but no obstruction. Mild periodic limb movement (restless legs) but did not wake her up. I looked at her last study and then she had some mild obstructive sleep apnea. She had the restless legs then too.  Sometimes the sleep team treat restless legs with iron supplements on a daily basis but it didn't wake her up during the study. If you think it wakes her up at home, let us know Dr R may recommend iron, but no need to give her another med if it isn't waking her up. Remember Dr R needs to look at the study himself and give you the final word.

Isn't that great?!  Assuming the confirmed conclusion will be fairly similar, which it should be!

About RLS (http://www.webmd.com/brain/restless-legs-syndrome/restless-legs-syndrome-rls), I may look in to the iron thing because she does wake up way more than Toby.  In fact I do too - the boys are both heavy sleepers.  I might have to get some more iron as well!!

Huge weight off my shoulders though, just in time for the Moebius Conference!

Let it go!

This weekend will be our third Moebius Syndrome Conference (having missed 2010 in Colorado), and we are really looking forward to meeting all the people we have become friends with via Facebook over the past year and a half.

Emma is really excited too, and has been preparing to sing "Let It Go" from Frozen, in the "Moebius Has Talent" talent show on one of the evenings we are there.  (In 2012 she sang a song she had just learned at church, without any preparation!).  

Of course I wanted to get her the whole costume for the performance, but Disney really messed up their product line with Frozen and I have not been able to get the Elsa dress!  Thankfully, and most graciously, Emma's buddy Abby agreed to let her borrow the dress she had been fortunate to get in one of the dress lotteries the Disney Store held - yes, they were basically picking names out of a bag.

We picked the dress up on Friday, and the rule is she can only wear it when practising or performing the song.  I can't let anything happen to something that is effectively irreplaceable!  It's also good because she has not been too bothered about practicing and I don't want her to get up and forget her lines - I think she'd probably feel bad if she did.

Check out the first practice!!

Study time

The sleep study went ok.  There was plenty to keep her busy beforehand...

Then we went to our room to wait...

Thank goodness for electronics!  Live TV on the iPad!!

Then we got wired...

Emma fell asleep fast and slept great all night.  Now we wait for the results...

Sleep study

Emma is having a sleep study tonight. We want to make sure that she doesn't still have sleep apnea before her surgery. I was a little concerned during the winter because she was not breathing consistently when she was congested.

Hard to believe it has been almost 6 years since her first one!

These kids are getting braver by the day!  Yesterday we went to our friends swim club, and the kids felt some peer pressure and started jumping in off the side!  Then they went down the slide!

First Toby...


Then Emma (with a little coercion!)...


Toby was one and done, but Emma progressed to where I didn't need to be anywhere near her and she would go down!  It was only into 3 feet of water, so she could stand right up.

The slide at our pool is a little taller, and twists around, dropping you in 12 feet of water!  She is still saying she's not ready for that, but our hope is she will be by summer end! 

You know, the kids cost about $150 for the pool for the season.  That's less than swimming lessons would've been and they are having so much fun!  Cheap at twice the price!

I'm seriously considering that we need to join a gym with a pool after the summer.  Swimming is the perfect exercise for Emma, and anyone else and it would be a shame for her to lose her confidence and strength when the pool closes.  Food for thought. 

Water babies

Hitting the pool almost every day has been a huge blessing.  Not only does it give us something to do, but it is a time when I am with the kids and [mostly] giving them my full attention, while also being relaxed. 

Both Emma and I are making friends, while Toby remains very shy and refuses to play with kids he doesn't know, which is a shame because a couple kids from his new class in September go there!

The exercise is great for us all, but especially for Emma, who after getting a snorkel mask yesterday found a deep love of being underwater!  I am truly astounded by how much she has taken to the water and is also not letting her disability stop her.  The mask covers her nose and eyes, so she can see well, and she is sucking in her lower lip, holding it with her teeth to try and create mouth closure.  For the most part she is doing better than Toby! 

She is even trying to do somersaults in the water, and getting super close to flipping, but her derriere is apparently filled with air and she cannot get it below the water line.  She looks like a duck when she tries to touch the bottom with her hand, bless her!!

Toby was wearing arm bands and a back float, until Monday when, in a bid to impress Aunt Kim, he removed the arm bands.  Yesterday he was swimming so well with just the "backpack" and the new snorkel mask, I took the pack off him.  He swims beautifully under water, but seems unable to swim with his head up!  In fact he has to stop and put his feet down every time he runs out of breath, so we won't be leaving the shallow end for a while. 

More incredible is how the boy who wouldn't put any portion of his face in the water the day before, now refuses to stay above the water - and subsequently keeps drinking it!  I actually had to take the mask away to keep him above for a while.

And then the kids are ready for bed and sleeping soundly!

Appeal

So, I got word yesterday that our appeal was received by the insurance company.  The time frame for review is 30 days!  This would not be good for us - Emma would be just a few weeks away from school starting, if we could even get the surgery scheduled in time.  I want her to have at least a little time to recuperate!

It's quite a tough decision when I know that she will have scarring when she starts school.  I'm not so worried about pictures because she was all banged up in her kindergarten picture anyway, and they do retakes in the Spring!  Here's hoping that the kids won't be totally freaked out by it.

One good thing is that going to the pool every day, she is making deeper connections with some of the girls she knew from school.  It's largely because we are there almost every day, and there's a limited number of kids that age - but it's still good to see Emma enjoying herself, and a lot of the time she's happy just splashing around!

Anyway, back to my point - we are hoping for a miraculously fast turnaround on the appeal decision.  A denial at this point is not necessarily an end to the discussion, but will probably mean we step back and consider our options for next summer.  We've prepped Emma on the possibility of that and she's been much more focused on her swimming prowess of late anyway!

Oh, and the conference talent show next weekend!!