One week down

Is it Sunday already?  Somehow this week has felt like an entire month, while also going quickly so I  had no time for anything.  I was delusional, thinking that Emma would bounce back from this surgery as quickly as her ear tubes, or g-tube closure surgeries!  I thought I would have "vacation" time this week.

After arriving home on Wednesday, Emma made a little progress each day.  She had more energy each day, and her appetite steadily increased.  She's very limited on what she can eat without chewing.  Mainly she has smoothies and meal replacement drinks, soup, apple sauce and mac and cheese. 

We have a busy schedule of medicine, to manage pain, oral rinses, because she can't brush her teeth, and antibiotic ointment for her incisions.

Emma has managed to watch several movies this week, as well as doing some coloring and reading.  She's keeping busy inside the house.  The weather has been the best we've had all year, and I know Emma is sad to not be able to go to the pool, which opened for the season yesterday.  However, it's not going to be the whole summer (I hope)!

One of the main restrictions she has had is that she still has drains in.  These are tubes, about 1/4" in diameter, inserted under the skin just behind her ears, and down in to her cheeks.  They are draining excess fluid and blood from the main surgical site, in to two plastic bulbs, that act like suction.  They are pinned to the shoulders of her clothes to stop them hanging or getting caught.  We are going to see her surgeon on Tuesday, to hopefully get them removed.

Going back to school is still up in the air.  She has 3 weeks left of school.  I've ruled out going back this coming week, which leaves two weeks.  I have a few hesitations.  First, she is still very swollen, especially on the left side.  Second, since her cheeks were fixed tight, to allow for stretching, her top lip is still way high, so she has a permanent fixed grin, which is not ideal for "fitting in".  Lastly, she has not seen herself yet.  We have offered a few times, but she is adamant about waiting.  I'm not sure she can avoid a mirror indefinitely, but I would like to have her hair done, so she feels normal.

So, we still have a ways to go, but we see the smile on Emma's face and it is like a ray of sunshine! 

Swing time

Scott ordered me a porch swing for our anniversary- but not for a porch (as we don't have one!) but to hang in our tree!!

This weekend the weather was perfect to put it up!

We've already had comments from passers by saying they like it!  I guess it's a novelty in our town!

The boys even hung out this morning waiting to go to church!

Day 2

Today was interesting.  The anesthesia seems to be wearing off, Em was awake for longer periods and actually used words instead of various tones of whining to communicate.  She's even repositioning herself to sleep on her side.

Everything is progressing as expected, and we've been shown wound care.

The hope is that she can be released tomorrow, but for that to happen, she's going to need to get up and walk a bit, and start drinking more, maybe even eat a little - none of which has she shown interest in!!

As of now we are alone in the room, so we could get a decent night of rest - I'm camping in her bed for convenience.  She wakes up whenever I get up!!

Please pray that she continues to improve and feels able to go home.  I'm not even thinking past that!!

Keep praying - the hard work has just begun

Well it's been quite the week for us!  In the space of 24 hours our world has been flipped upside down.  A little over 24 hours ago, Emma went in for smile surgery using the temporalis transfer procedure.  We were told it would be about 5 hours long, to do both sides.

After we were waiting about an hour our Pastor arrived, which was a welcome surprise.  He is always able to inspire calm in us, although we were both very chipper and relaxed.  He couldn't stay due to a big meeting some way out from town, which was even nicer that he trekked into the city beforehand!

After that a couple friends asked to come and get lunch with us, so we had a little lunch break, and as we headed back to wait, we go the call that she was out, in a little over 4 hours.

We were taken back to the acute care recovery room where she was still very sleepy, but not distressed at all.  The surgeon had spoken to us prior, and warned us that it was not going to be pretty.  Basically, her cheeks are super tight, so her mouth is pulled into a Joker-like smile.  This is to allow for some stretching that will happen to the muscle as it settles in.  The hope is that through therapy she will be able to retain the full range of contraction of the muscle to smile.

Additionally, there was a 2"wide strip of hair shaved from ear to ear, over the middle of her head, where the zig zag incision allowed them to access her muscles under the scalp.  The hair will grow back, of course, but I don't know how she's going to react to it.  Thankfully there is still hair up front that can be pulled back to cover much of the strip.

After about 3 hours in recovery we were finally transferred to a room (shared, because the hospital is full).  As the anesthesia wore of, nausea increased and Emma was not able to keep down the water or ginger ale we were syringing in to her mouth.  That increased through the night, which also meant she was not able to absorb the pain medication, so they gave her some more morphine in her IV.

Scott went home to sleep and take care of Toby.  I stayed with Emma.  There is a sofa bed next to her bed, which was fairly comfortable.  However, due to the frequent moaning from Em, vomiting and the TV from the other occupants, I struggled to get any sleep.  Emma wanted me to lay with her, which I was happy to do, but unable to get comfortable.  When I finally did get comfy she asked me to get out!

She is in a little pain, but admits to mostly being miserable and wanting to go home.  She's not happy to have  a catheter in either.

The doctors came round in the early morning, and prescribed some other pain meds for her IV, but she is also keeping fluids down.  She's getting IV fluids also, especially since she had a lot of blood loss and needed a transfusion.

She will be in the hospital until Wednesday.  We need to wait for the anesthetic to wear off completely do she can get up and walk around.  She needs to be holding down fluids, then soft foods and purees, and have her pain under control.  

She also has two tubes draining the area in her face that the surgery is performed. They will come out on Wednesday.  

This part is harder than I had anticipated (based on the past), but that's my underestimation!  Just trying to keep her calm and as comfortable as possible. 

Scott had let on that he was having flowers delivered today, which is a lovely gesture.  But when they arrived I was taken aback at how perfect they were!

You see, it was basically a replica of my wedding bouquet!!

He doesn't claim to have come up with the idea himself, but he gets a ton of credit for such a romantic gesture and surprise!!

Class act

Today was Emma's last day at school before surgery and I arranged to go in and speak to the kids about what they could expect when she returns.  She also decided to read to them from a book that details what it can be like to have Moebius Syndrome!

No special event is complete with out refreshments, so I made brownie cupcakes!!

I half expected Em to back out of reading, but she went with it!

Then the kids gave her the cards and drawings they had made in secret for her!  Her teacher also gave her a book and stuffed bunny!

After we talked about how Em might look different and have a change of diet, they all got to eat their cupcakes!

Then they had a little extra recess, which was awesome on such a warm sunny day!  Toby and I hung around as it was almost home time, and I got a couple of pictures.

We couldn't dream of a better teacher or class for her!  

Ten short years

Ten years ago I gave myself to this man, for better or worse, for richer or poorer, until death parts us.

We've seen good times, and some bad times.  We've had times of  affluence and times of need.  And through it all Scott has been my superhero.  With the character of Captain America, the creativity and wit of Iron Man and the strength of Thor!  (And better looking than them all!!!)

It's unlikely that Scott will read this, but I want to share with you the impact of being a husband, and father, that takes seriously God's instruction...

“The husband provides leadership to his wife the way Christ does to his church, not by domineering but by cherishing. So just as the church submits to Christ as he exercises such leadership, wives should likewise submit to their husbands.

Husbands, go all out in your love for your wives, exactly as Christ did for the church—a love marked by giving, not getting. Christ’s love makes the church whole. His words evoke her beauty. Everything he does and says is designed to bring the best out of her, dressing her in dazzling white silk, radiant with holiness. And that is how husbands ought to love their wives. They’re really doing themselves a favor—since they’re already “one” in marriage.”

Ephesians 5:22-28 MSG

I am unable to recall a time when we have argued and it wasn't at least 51% my fault!  There is no memory of a time when I doubted that he would use all his strength to protect me and our children. 

There are many occasions when I worried I might have embarrassed him, only to be reassured that he is never ashamed of me.  And when I do share my dark thoughts and ugly feelings he doesn't encourage me, but leads me back to the light, reminding me to love and be loved.

When our hearts were breaking for our baby girl (as they often still do) he never tired of listening to my fears or wiping away my tears.

When I fall short, lose my cool and am disgracefully rude, he is quick to forgive, forget and make me smile.

This man - humble, wise and kind.

My best friend, my inspiration and my hero, ten years ago agreed to lead me through the rest of our lives, together.  My part is to follow, and I will follow him anywhere.

You’ve captured my heart, dear friend. You looked at me, and I fell in love. One look my way and I was hopelessly in love! 

Song of Solomon 4:9 MSG

"For love is as strong as death, its jealousy as enduring as the grave. Love flashes like fire, the brightest kind of flame.”

Song of Songs 8:6b NLT

A new chapter up ahead

Emma expressed it herself tonight when she said "on April 23rd my surgery was so far away, and now there are less than 6 days to go!"  She's not wrong.  

Two months ago we faced the decision on whether to go for a local surgeon with no experience with Moebius Syndrome (though vast experience with facial palsy), and a procedure that will leave scars on Emma's cheeks, or to search the country for someone more experienced to do a two-stage procedure that has more complications and varying results.

We decided to go with the former.  While finances were not our concern, we are SOOO thankful that the state medical assistance has agreed to cover the procedure.  The benefit of having the surgery in our local hospital is huge - we can have as many follow-up appointments as needed, the weekly post-op therapy, and should there be any complications, there is no difficulty in returning immediately.

So we are in the final preparation stage.  On Monday we had an appointment with anesthesia, and poor Emma had to have blood taken for the first time.  She handled it well - she cried a lot but sat still and did it.  I always give the kids treats when they have to get shots, so I asked her if she wanted a treat, or cash!!  She opted for cash and the guy drawing the blood disapproved - I told him it was fine, the girl's saving up for an iPad!!

Speaking of which, she's done so great, saving $160 since Christmas.  I told her they were $200, which I thought they were.  Turns out they are more like $500!  I feel really bad because I was hoping to give her a few extra dollars so she could buy it for next week, and her recovery period.  Especially since she won't be able to go to the pool for a while, and it opens on May 27!!  Still figuring out what to do about that.

Following the procedure, for 3-4 weeks, Emma will need to avoid chewing as much as possible.  So we are investigating meal replacement drinks.  Most people go straight to "milkshakes" but seriously - that's not the direction we can afford to head in.  It needs to be nutritional, and not high in sugar or we'll have diabetes to deal with!!  Lots of apple sauce, yogurt, some ice-cream, maybe pasta.  There aren't many whole fruits or veggies you can eat without biting and chewing, so I'll make some of my smoothies, which she does love!

Since all her favorites are off the table for a while, we are going out for a "last supper" on Sunday, wherever she wants.  I'm tempted to give her anything and everything all week because I feel bad for her, but that's very short-sighted.  She'll be back to normal before long.

After surgery, we anticipate a 1-2 day hospital stay.  She will have staples across her scalp, where a hairband would sit, and stitches on her cheeks.  I will be off work through to May 31, and I am hoping she will be ready to go back to school - but I am not going to push her on it.  She will have 3 weeks of school left, finishing on June 21.

In fact, to try and make returning more comfortable, I am going to go into her class this Friday and talk to the kids about what she is having done (and bring smiley face cupcakes!!).  Her class and teacher are so supportive of her that I really would like her to go back and feel normal again.  

Even if she does return to school, she won't be allowed to do anything that could result in trauma to her face, so no gym, no outdoor recess (she's thrilled about that), no physical therapy, and no gymnastics.  We've actually had her going twice a week to gymnastics to increase her strength ahead of the recovery time.  I will try and have her doing some moderate exercise, like walking etc. 

After all the stitches are firmly healed Em will begin a therapy program involving exercises at home, practicing using her new smile and therapy at the hospital that uses electrodes and feedback on computer screens to retrain the brain.  She's excited about the latter, because they are basically simple video games controlled by your mind and muscle impulses!

We do not know anything past Monday, (or tomorrow really!) and we are aware but not focusing on the standard risks of any surgery.  Rather we are focusing on the hope that this will give her the ability to smile "so that people will know when I am happy, or sad, without having to ask."

So, please continue to pray with us, for the doctors and nurses, for the hospital, for Emma's healing and recovery, for our strength and energy, for the future and that God would be glorified throughout this stage of Emma's story of hope.

The gift of speech

Since October she has been in an enrichment program at school for "mentally gifted" children.  As part of this program, the kids were challenged to choose a topic of interest that they did not know much about, to research, and present using a slideshow.

Emma's chosen topic was Pocahontas!  She called it "Pocahontas the Peacemaker".  She did the research and created her presentation at school and presented it to the other students in the program.

On Tuesday Emma gave her first public presentation, along with other students from higher grades, and the other elementary school in town.  The kids were assigned to be in a group of 5, kids they didn't know, and a range of ages (of which she was the youngest).

I got a couple pictures of her practicing before we went...

She was nervous, but not hesitant and did really well. 

We are so proud of her achievement, not because she did this with Moebius, but because she did it!!  Public Speaking is not something many people enjoy, let alone do!! 

Her current project is on Ocean Animals and her group will present their research to every class in her grade at school!  We are currently waiting to see if she will want to participate in that because it is right after her surgery.  But she will have more opportunities next year and beyond!

Who's Lazy?

Last night, Toby told Emma she was lazy, which really upset her because we emphasize not being lazy.  His justification is that she does not run around as much as him!  So of course, this raised the question, what exactly is "lazy"?

Our response was to explain to both kids that directionless activity does not constitute not being lazy!  Everyone has strengths and weaknesses, and as a family we work together and support each other.  Where Toby has boundless energy, he can lack focus and attention to detail.  Where Emma lacks desire to move, she can focus, accomplish goals and has a heart to help.

We often tell the kids that being lazy can be the result of too much TV, eating unhealthily and general lack of participation.  So Toby can be excused for equating it solely with that.  In fact, the dictionary definition supports that:

Simple Definition of lazy
    : not liking to work hard or to be active
    : not having much activity

    : causing people to feel that they do not want to be active

    : moving slowly

But laziness, which the Bible cautions us against, is more of an attitude, a heart issue.

Proverbs 13:4 ESV
The soul of the sluggard craves and gets nothing, while the soul of the diligent is richly supplied.

2 Thessalonians 3:10 ESV
For even when we were with you, we would give you this command: If anyone is not willing to work, let him not eat.

Proverbs 14:23 ESV
In all toil there is profit, but mere talk tends only to poverty.

Colossians 3:23-24 ESV
Whatever you do, work heartily, as for the Lord and not for men, knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ.

1 Thessalonians 5:14 ESV
And we urge you, brothers, admonish the idle, encourage the fainthearted, help the weak, be patient with them all.

1 Peter 4:10 ESV
As each has received a gift, use it to serve one another, as good stewards of God's varied grace:

Ephesians 5:15-17 ESV
Look carefully then how you walk, not as unwise but as wise, making the best use of the time, because the days are evil. Therefore do not be foolish, but understand what the will of the Lord is.

So, while there is certainly a connection between lack of physical activity and lack of work, it is of greater concern if we are spiritually lazy - failing to do that which God has asked us to do.  Running around being busy all our days does not mean we are being productive or obedient.

It's a great word picture of how appearances can be deceiving!  Walking with God, for the long haul, requires a balance of rest and exertion.  We just have to make sure that the exertion is purposeful and mot merely a distraction!!

Breakfast in bed

The kids gave me all their cards and stuff they made for Mother's Day last night, so I wasn't expecting anything this morning.  It was a pleasant surprise to be awoken with "breakfast" this morning!

The kids made me pancakes - frozen pancakes, cooked in the microwave, which is what they eat pretty much every day.  They added some syrup for good measure.  I think they may have taken a while to bring them up because they were cold and chewy, but this was not the time to be fussy!

Emma had woken Toby up and they did this themselves - Scott was still asleep too!  Bless their hearts!!

Mother's Day!

I became a mother when this girl came into existence. She taught me that I have a greater capacity to love than I knew. She helped me find the strength and determination that God had given me. She showed me that even the smartest people can not outsmart the purpose of God in our lives. She embodies the need to hope for good no matter how bleak the outlook. And she reminds me that a smile is not a movement of your lips, but an attitude of your heart.

My house and my heart is full!!

Tonight I asked Toby to stop growing.  He agreed to stop at 7 1/2!  Instead I asked him to promise to never stop loving me.  He happily agreed!

Mothers Day

The kids came home from school this week with a ton of Mothers Day things.  Of them all, this was by far the funniest!