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!

What Saturdays were made for!

Emma and I went to H&M today, to take advantage of the $5 dresses they have!  I got her one last week, so she knew it would be good, and was excited.  She went in her own fitting room, with more items than I had in mine!  

I do miss the kids being little, and so cute, but there's a lot to be said for the age where I'm her "best friend" and she loves to be with me!

Bully Update:

At Field Day yesterday (pictures to come), one of the boys was on Emma's team.  He called another little boy "stinky", and he told me because there were not other teachers or mothers around.  I looked at the kid and said "Do you want to apologize?"  He did say sorry and looked back at me.  I said "it's not nice to call people names".  I said it very neutrally and didn't raise my voice (maybe an eyebrow!).  He looked like he'd never been told that before.  I did meet his mother and watched the dynamic there throughout the day.  I made some conclusions, maybe assumptions, but importantly it helped me realize something.

I realized we can not change other people, including kids.  While I will report bullying when necessary, I also need to make sure that my children know that name calling is not okay.  Often allowed when it's "in jest" or even between siblings, but the truth is as they age, it escalates and kids love to get laughs which reinforces it.  It's hard to draw a line for kids, especially if they hear adults doing the same thing. 

"Sticks and stones may break my bones, but names will never hurt me!"  LIE!!!   

We don't use the words stupid, weird, hate or other things that reference physical appearance or intellect.  I never called my kids bad - I will tell them they are behaving badly, or made bad choices, but I don't want to devalue their self-worth that I've spent so long building up.  They need to know at their core they are loved, valued and have purpose.

The things we say are taken literally by kids and you don't know what sticks with them, replaying in their head like a hurtful soundtrack.   I can clearly remember some of the hurtful things that were said to me as a kid, but I am also ashamed of all the times I've taken the low road of picking on someone else, which I did a lot at school, paying it forward in a negative way.

If nothing else, I want my kids to be able to look at a bully, or anybody else and say "I've never treated you that way, what makes you think it's okay to treat me that way?"  My mantra with the kids is "you are not responsible for anybody else, but you are responsible for your response."  It's a tough one to live up to, for anyone, but it helps me to try and remember that too!

Clearly they will face bullying throughout their life, who hasn't?!  But no matter what they face I hope they always feel that our home is a safe haven where they can be themselves, find peace, joy, love and hope.  And the same goes for anyone else who visits!

Outta nowhere.

This just happened (and I have no idea how to handle it):

I'm eating dinner with the two kids and Emma looks at me and says "[two boys at her table in school] call that my creepy face."

Wha? 

She goes on to say "it doesn't bother me."

I probe for more details (of course) and it seems that when she stares at them (which I'm not sure if she gets that she always is "staring" or if it's when she opens her eyes wide), they have said more than once it's a creepy face.

I am clearly turning into momma bear and Emma starts to cry.  She thinks I'm mad AT HER!  Doh!

And my response now makes her conscious that what the boys are saying is kind of mean.  Double doh!

We've been through the unkind things like "I hate you" but not actual physical comments.  Not. Ready. For. This.

Yesterday Emma borrowed some of Toby's clothes, and he called her "brother"!  It wasn't long before she was back in a dress though!