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!!

Tested

Emma took and passed the swim test at the pool today. 

 It required a 25yd swim, then tread water and float for 30 seconds.  I'm still so awed and proud.  She's done all this in just a few weeks with very little pool exposure prior to Florida, and swims as well as other kids her age!

The purpose is to be allowed to go on the slide into the deep pool which is 8-12 feet deep. 

Emma is not willing to attempt the slide yet, but we have worked up from jumping while standing in water, to jumping off the side into 4ft of water.  It took a very gradual process of increasing the risk!!

Toby is content with this...

But he is getting more comfortable.  He's never been a water baby so it will take him longer.

Swim test

It's still hard for me to believe that Emma is swimming 25yd laps in the pool, stopping only at the end, but I was bowled over today when she let me teach her how to float on her back.  I was truly concerned it might take all summer, if at all, but apparently it just took 5 minutes of focus!

Then, Scott challenged her when she didn't want to stop floating so we could leave the pool.  Jump off the side and we'll stay longer.  There's many reasons why this was a tough one.  Emma will put her head under water, but holds her mouth and nose with one hand, and holds her eyes closed with the other.

Determined though we started with off the bottom step holding my hands.  Then the top step, then top step with one hand, and then she jumped off all by herself a few times.  Her head went totally under on landing but she was able to put her feet down and come back up quickly.

I couldn't have been more proud of my brave little fish!  She can take the swim test at the pool now, and pass!

Toby?  Still requires more buoyancy aides than a life raft!  Maybe one day.

More pictures from the fundraiser...

Showing someone the baby pictures we brought along (note the hands on hips!)

As we paid attention to the speeches being given, Emma pulled us in for a group hug and hammed it up for the photographer!

They sent us the picture the photographer took at the fundraiser last week!

And Emma is going to be on their July 4th post!

Wednesday was Scott's 32nd birthday.  It was pretty low key, like the man himself, but I got this cool time lapse shot!

Swim time!

I wasn't privy to the prior discussion, but somehow Emma ended up swimming 5 laps to earn herself some cheese fries last night!

She's doing really well with the swimming but we have to teach her how to float on her back and also how to go under water safely.  Two months will hopefully be enough.

Toby only feels safe if he's more buoyant than a balloon! 

Setback

It was about 4pm when Scott got a call from our secondary insurance company.  We have not been in touch with them directly, so it was unexpected.  The lady informed Scott that they had denied the doctors letter for special circumstances for them to do Emma's surgery.

Medical insurance in the US is a minefield, maze and obstacle course, surrounding money and health - two things that should not relate to each other!  With such a huge country, there are naturally boundaries.  We live in Pennsylvania, one of 50 states and it is larger than my country of birth by a long shot!  We have two insurance companies: the first is coverage provided by Scott's union.  Our contribution for that comes out of his wages.  Our secondary coverage is for Emma alone, provided by the state government for her chronic medical condition.  The first has always been fairly hands-off unless hospitalization is required, but the second picks up everything for Emma that the first won't!  It was our hope the same thing would happen here.

As the doctor we want to use is in New York State, where the companies we have do not have payment arrangements with hospitals (i.e. a reduced price agreement) they do not want to cover it.  Understandable,it is business after all, which is so wrong -  Making business decisions with people's health, but that's the system we are working with.

They did offer us an alternative, which is to use the doctor at Children's hospital - remember, the surgeon we saw in the winter, who has followed Emma since she was an infant.  We decided not to go with him because he had not performed surgery on anyone with Moebius, nor done the procedure on any children.

At 5pm we arrived at a cocktail party in the city.  

It was a fundraiser for Fred's Footsteps, a great philanthropic organization that provides financial support for families impacted by an illness or injury of a child, until they can readjust to their new normal.  They helped us out greatly in Emma's first year and it was our pleasure to go to the 10th anniversary to share our story with donors, and encourage them to keep contributing.  It's quite the experience rubbing shoulders with rich people at a cocktail party when you have no money and don't drink, LOL!

The significance is that the group was started in memory of the CEO of our first insurance company, by his wife and children.  The bigwigs from the insurance industry were there, and we took the opportunity to ask for help!  We are going to see if we can't get our case in front of the top brass at the second insurance company and maybe get their support!  A friend in the industry also suggested we get our local state representative (like an MP) involved to lobby for us!

The hope of getting a smile for Emma is not dead, but has been setback.  Our original hope of getting the surgery in early August looks highly unlikely right now, if at all - but I am thankful that we have a big God, who can do all things, and often seems to wait until we have exhausted our resources so that there is no doubt when He comes through and makes things happen!  We shall continue to hope, move forward and see.

Family Reunion

Today we are at the annual Fetal Family Reunion, for the Center for Fetal Diagnosis & Treatment at Children's Hospital of Philadelphia.

Emma was diagnosed with gastroschisis when I was 20 weeks pregnant, 7 years ago.  It was the start of a very unique pregnancy and parenting experience.

Most days we are indistinguishable from other families, embroiled in a daily routine of school, work, play and arguing!  But there are those days (thankfully) that remind me of everything we have been through, overcome and are thankful for.

Don't get me wrong, I would not have chosen for my child to be sick or to have to face all that we did/do.  However, I choose to be thankful for all that we have learned, for how our lives have changed us, for the amazing help that we found and for the truly unimaginable progress Emma has made.  By God's grace and blessing, our journey has always been lined with silver, and more precious than gold.

As we visit with nurses and doctors who were there with us through the toughest of days, and bask in their amazement at the fireball that is Emma, we are truly thankful for the joy we have.  I love to encourage them, to thank them again and though I am friends with many on Facebook, there's nothing like seeing a miracle in the flesh, with all her attitude and charm!

The kids had a real blast!

Last day

Today is my last full day in the office, on a regular basis!  From Monday, instead of three full days per week (7 hrs + lunch break), I'll be doing five half days (4 1/4 hrs).  Over the summer it will mean getting to spend the afternoons with the kids and enjoy the weather.  In the fall, I will be dropping both kids at school myself, and then I'll pick Toby up from Nanna's before collecting Emma from school.  It's a great answer to prayer, because being home after school was a main reason I'd planned to stay home.  This is totally the best of both worlds.

It's going to be an adjustment - getting up early every weekday, but it puts Scott and I on a level playing field with regards to my mid-week late nights!  The kids are up fairly early anyway, so it's more psychological than a practical change.  It will mean I only have to fill half a day with the kids, instead of a whole one - much more manageable for the insatiable little darlings!  Not to mention not needing to buy/make lunch for work as I can eat when I get home.

SURGERY UPDATE: The insurance company is going to receive letters soon, and will let us know what hoops we have to jump through to get coverage!  I'm still a bit hesitant about it due to the risk of it coming "undone" and not having a second chance.  However, that will always be a risk, and it would not be the end of the world, maybe just the end of a dream!

Is it better to pursue a dream and fail, than to live life with a dream that never becomes a reality?!

What's a smile worth?  That's a tough one to answer.  While Moebius syndrome has many difficulties, being unable to smile has maybe the largest impact, at least for Emma.

While we do not yet know what a smile will cost, we can see it's value.   For a girl so full of life, love and joy, it would be life changing.

We continue to ask God for wisdom, clarity and favor in this matter.  It leads me to consider how you know when God answers.  We are praying for Him to guide our thoughts and feelings, to open and close doors to lead us down the right path.  We are in need of His favor and provision to make it happen.

Then comes the step (or leap) of faith.  When you pray to God, lay your request at His feet, you must do so with the belief that He will answer your prayer!  Faith, believing that what the Bible says is true.  And it says God loves us, cares about the smelts aspect of our lives and He will answer.

So, you go about your business, sensitive to any prompting to go one way or another, trusting that indeed God is informing your heart of the course it should take.  And when you head I a wrong course, he will close doors to lead you back.  (if you persist he does not force a change, but it will require determination to continue to move that way!)

For us, we can compare our hearts on the matter.  Where do we agree, how do we confirm what our hearts are saying.

Right now, we are in agreement to pursue the surgery, with August in mind and see what the insurance company says!  Clearly they could present a huge hurdle that would have to be considered as redirection from God, but considered with all other things.

Reconnaissance mission: Complete!

Where to start?!

So, we left home at 9ish yesterday morning, loaded up with snacks, drinks and movies.  Emma was as happy as a pig in mud!  The drive was slated to take 3 hours, to Garden City, Long Island NY.  Due to me trying to take a picture with my phone, we missed our exit off the Verrazano bridge and ended up driving about an hour extra around Brooklyn, but getting stunning views off Manhattan.

I kept pointing out the Statue of Liberty to Emma, who would take a cursory glance away from Sleeping Beauty,declare she couldn't see it and "knows what it looks like"!  I gave up!

When we arrived at the office (45 minutes early - yes, I built in a huge buffer!) I started to get nervous.  It felt strange, not the same as the familiar Children's Hospital that we are used to. I wondered if we had made a big (expensive) mistake!  The staff were very friendly, and Emma was happy to get her hands on my iPad (priceless, really!).

The time came for us to go back to a room.  It was all becoming very real!  The doctor arrived and he was very professional, but friendly.  He took a couple of pictures of Emma and then took us to his office to discuss the procedure in detail.  

Let me pause here and mention two things: first, of course Emma needed a drink, how did I fail to bring one in!  Such a rookie mistake.  Second, in my 7 years of doctors visits I think the only times we have had meetings with doctors (as opposed to an exam room) is when we were told Emma had gastroschisis, and when we met the doctors at Children's and they gave us a rather gloomy prognosis.  That's not to say this had a bad omen, but that to me, this is a move that denotes respect, a commitment to really talk, not just answer whatever questions you can throw out in a short time.  I was put more at ease.

Dr. S. Proceeded to talk first about facial paralysis and Moebius in general, setting a foundation in case we weren't as schooled as we needed to be - and used a book.  One with paper and diagrams!   Old school, it liked it!

Then we got into pictures.  He has only done the procedure on 4 people with Moebius.  "Only" is not really fair - for such a rare condition, that's pretty high!  Plus, this procedure (temporalis muscle transfer) is not widely done anymore, which is a shame because it seems to fit the bill for smile surgery perfectly.

Several pictures were of people with only one side of their face paralysed, and many had full eye movement also, but it was informative.  But the pictures of the individuals with Moebius had dramatic results.  Not only was the smile pretty natural looking, but the new position of the muscle, laying over the cheek bone, creates a contour and definition that is otherwise missing with Moebius due to muscle atrophy.

We mentioned the problems that the little boy in Norway had and the doctor had some very plausible explanations for why that might happen with certain techniques for the procedure (he can't say for sure because he has no idea on the specifics), but was able to reassure us that it has never happened for any of his patients and why that is the case.

We asked about Emma's age, since the youngest person he had done it on was 8 and he seemed cautious but also mentioned that even if she was uncooperative with the exercises, the ability to cause a smile would still exist when she bites down, so it's actually not a big concern.  However I feel confident she will do it!

We discussed when he could do it and he is available all summer, if we choose to proceed now, or whenever we do.  The main issue there is getting the insurance companies to move quick enough, because I would be aiming for early August, so that healing can be in progress before first grade.

Scarring was minimal after time, and even enhances the definition of the smile.  She would require a one night hospital stay and the only restriction on food would not be chewing as much as no big biting for a few days.

She would probably need the muscle to be tightened after a few years, which is not nearly as complex as the initial procedure.

Also, at some point, because she can not fully close her eyes intentionally (did you know your eyelids are a sphincter muscle? A circular closure that pulls the upper and lower lids in. I didn't!  Apparently with Moebius it is not as strong so the lower lid does not move as fully.) she will need gold weights put in her top lid to weigh them down and a sling in the lower lid to help it stay up.  Since she is so young there's no drooping yet, so I don't think we would get that done at this point.

The doctor was very conscious of not wanting to freak Emma out and waited until she was suitably distracted with a game to show us the graphic pictures of the procedure!  She did frustrate me at one point asking if we could leave.  I asked her if she wanted to have the surgery to help her smile.  She answered that she did, and I told her that if so, she needed to sit up and stop whining - which she did!

When we left the office I asked her in the elevator what she thought.  She said "can he do it? I wasn't listening!"

So, yes, he can and will do it, if we decide to proceed.  We chatted a bit on the drive home (which was decidedly quicker as we took the right road! 3 hours over rush hour is not bad) and both felt positive, but have to really talk about it.  And pray about it.

And then, like many things in life, it comes down to money!  I know people are uncomfortable discussing it, but it really is a factor for us.  We will have to navigate the insurance options which will require the equivalent of a masters degree in medicine and legal negotiation!  Then there's the extra expenses.  Yesterday was easily $450 all in.  Perhaps if we'd been planning this all along we would have saved (perhaps not) but we weren't!  We planned to wait on Emma, we just didn't expect her to make a call so early!  However, people waste tons of money on far more frivolous things than this, so we will likely overlook it.  We may even start a fundraising account for anyone who would like to help!

Feel free to comment with any questions, and I'll keep you posted.  This could be a life- changing summer after all!

Arrived!

So, we have arrived in Long Island, NY, with time to spare.  That was mainly because we left home 6 hours before our appointment! Just as well since I made us miss a turn off the Verrazano bridge and we ended up driving around Brooklyn, but got a great view of Manhattan!

that's the new World Trade Center looming in the background.  Scott's company is building it and he was recently treated to a visit and got to go to the top, and sign his name in the cement at the very top!

And the iconic Brooklyn Bridge, with the Empire State Building hiding in the bottom right corner!

It never fails to make me smile that we live so close to such a unique place.  This city is truly a place all it's own, and even the outer parts like Brooklyn dwarf Philadelphia.  I guess I'll forever be a tourist!

Having been stuck in traffic for a few hours we stopped at the first place we found after getting off the expressway, you know...!  We decided a pizzeria would do,  and also provide lunch.  As we sat by the window of this little eaterie, Emma suddenly yells "look, a plane!  Look how close it is!"   Her excitement was cute, but we felt rather awkward as we both had flashbacks to 9-11 and thought New Yorkers might not care to hear that.

Now we are burning time waiting for our appointment!

Happy Father's Day to my Dad, Scott, Pops, Grandad, brother-in-laws, and all the other guys who care for, provide for and take responsibility for others!

What do you do when the kids are off school for over two months and the weather will be 80f+ every day?  Join the pool!!

Here's where we will spend our afternoons this summer!

With a really good size baby pool...

Since only people from our town can join the pool, the kids will get to know others that they go to school with, and hopefully I'll get to see some friends too!!

It may seem frivolous, until you consider that in the summer here, the only cool place is indoors - in the air conditioning.  At the pool both kids will get lots of exercise and because they are distracted, it will help me get their eating habits under control.

Schools out for the summer!

It's official - summer has begun, or at least for the kids!  Emma had her last day of Kindergarten today, and will be off until September (Toby has been off for a few weeks).  I will be changing my hours from June 23 to work 5 mornings every week. The plan is that I can go and pick the kids up and then go do something outside so everyone is getting exercise and vitamin D!  Somehow I'll try and fit in some educational stuff, and make sure Emma stays on point to start first grade.

In the fall I will continue my new schedule and be able to drop each of the kids off at school in the morning - which I'm so pleased about with Toby because I can meet the other moms and help him build friendships!  I'll also be home in time to pick up Emma, so she won't notice I'm working at all - how great is that?  The best of both worlds (chores will get done when they get done!).  Toby will go to Nanna's after his short school day and hang with his cousins. 

It's been such a blessing to be able to work part-time and I am certain that I work for the most understanding and flexible people ever!  It wouldn't be possible with out the help and care of Scott's parents, and we are so thankful for them giving the kids a fun, safe and educational place to be.  I think the kids and I are all glad we aren't together all day every day!

Getting Nerves!

(Did you get it?  "Getting nerves!" - nerves/anxious, and nerve/movement for Emma!  I thought it was very clever!!

So Monday is the day we head up to Long Island to meet Dr. S. about the temporalis muscle transfer procedure (feel free to google it for graphic pictures of the procedure!).  This is also known as the Labbe Technique, which first came to our attention last year when a little boy (also 6) in Norway had the procedure.  Since then I've been in contact with his mum about the results etc (the sheer beauty of social media is enabling relationships that otherwise would not happen!).

It seems that the results were not as pronounced as they had hoped, with only slight movement.  Unfortunately, the tissue around his mouth was much softer than they had thought and the muscle loosened.  The decision was taken to go back in and tighten the muscle, which was earlier in the week.  Unfortunately the muscle retracted, and hid, behind the cheekbones and they were unable to reconnect it.  Now all they are able to do is try the lengthier, two stage gracillis nerve transfer, and hope that works.

As you might imagine, this has me anxious in all kinds of ways!  My initial reaction is that we should wait until she is older and her face a little firmer.  The doctor said he hadn't done it on anyone younger than 8 before, but mainly due to the extensive exercises post-op.  Of course, we will ask him on Monday - better to wait than rush it and blow the whole thing, now we know it's not a guaranteed outcome.

But then, perhaps we don't wait, and opt for the nerve transfer, though that is done one side only per surgery (each being 6-8hrs long and months apart.), because that is better done on young children.

Either way, we are going to New York on Monday (did I mention the $400+ fee?  We might need another yard sale, lol!) and Emma is without doubt really excited about the whole thing.  I will need strong resolve not to rush into anything based on my hearts desire to give her what she wants.  Anything else, no problem.  A smile?  I want to get it for her NOW!!

"Which of you, if your son asks for bread, will give him a stone?  Or if he asks for a fish, will give him a snake?  If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!
Matthew 7: 9-11

At the Moebius conference this year Emma plans to sing in the talent show again.  Here is a practice from back in April...

Now, I'm on the hunt to find her an Elsa costume for singing Let It Go!  

At times I worry I'm spoiling her, or creating a self-entitled monster.  But most of the time I think I'm just trying to let her flourish and embrace life, because she's 6 and it won't be long before she feels compelled to either suppress her personality to fit in with the crowd, or just wonder if she's good enough, just the way she is.

We experienced a bit of that on Sunday at a birthday party.  It wasn't the old-fashioned kind where the kids gather in a home and activities focus on being together.  It was at a big "fun place" with lots of different bouncy houses and slides etc.  Though it wasn't busy, and maybe because we got in a few minutes late, Emma had a hard time connecting with the other girls, all of whom are in her class at school.

It wasn't so much meanness (all girls can be a little thoughtless when it comes to not including everyone), but she was upset.  I reassured her a few times that they would play, and she needed to join in their game instead of trying to lead.  But by the end it seemed she was the odd guy out.  I hugged her through the tears and said "let's get out of here!"  

When we talked about meeting other kids at the conference in July she was concerned they might not want to play with her.  I don't think it will be a problem, and I know she will be the one to take them by the hand and say "come play with me" as I've seen her do before.  I'm also in touch with many other Moms on the Moebius Moms facebook group, so I won't be so shy!!

Fun in the sun!

How we handle a hot day with nowhere to go!!!



It's not lost on me how blessed we are to have the outdoor space and resources to give the kids fun memories like this, or how wonderful Scott is at providing our kids with a childhood full of crazy memories!!

Thursday...

Family trip to Home Depot - and the best shopping cart ever!

Then dinner at Emma's favorite - the Springfield Diner!

With an Elmo cupcake...

And chocolate fudge cake for dessert!

More and more we are trying to balance our lives so that we take these small opportunities to "treat" the kids, spend time together where chores are not calling our names and generally slow down for a bit.  All too soon they will be heading off to college (12 years as Emma lets me know!), and if the past 8 are anything to go by, that will not feel like very long at all!

Work Week

So, I'm in slow traffic on the way to work,. It's raining. But I'm
happy! I realize I haven't posted all week, and it's really a good
reason for that. Last Friday I deleted my Facebook app from my phone,
which has severely restricted my ability to post statuses, and
pictures on Facebook. It's also reduced the drive to take pictures. To
share the minutiae of my every day life! And that's great. Facebook
was taking over my time and attention.

What else? Well I changed my part-time hours this week, from three
full days to 5/2 days. This is in preparation for the fall so that I
will be able to pick Emma up from school every day. I wasn't sure how
it would go but, I have to say I really like it!

Firstly, I have to get up every morning around the same time anyway.
And it is always up early so there's no such thing as sleeping in on
my days off! Also it's so nice to leave work right around lunchtime,
get home have time to spend with the kids, get dinner ready and even
do chores or errands, or before Scott gets home.

It will be a mixture of schedules over the summer, as we have doctors
appointments, and things like that so rather than use vacation I'll
switch my schedule so that I'm still working the same number of hours
each week.

This week I also started working out again. It's been a couple of
months since I was committed to it. So I started getting up at 5:30am
again (alarm starts at 5, and I "snooze for a half hour!), then a half
hour work out. It leaves me an hour and a half to get the kids and I
ready. When I don't work out I typically get up an hour before I have
to leave and it's a stressful rush!

Clearly I'm a creature of habit, and having the same routine for all 5
weekdays gives me a sense of order, and peace!