Big Day

About 10 months ago we received notification about Emma's scheduled "Cranio-Facial Day" at the hospital. Apparently they are working on the PR for these "team days" because we knew not what it was referring too!

A phone call revealed that a day was scheduled for her to meet with all the components of the cranio-facial team at the hospital. This team includes the plastic surgeon who did her tongue-lip adhesion.

Unfortunately we missed the first appointment back in May because Emma was in the ER with gastroentiritis. 6 months later we were able to make the appointment - the next available day that everyone was available!!

When the word "day" is used in this context they are not kidding. We were at the hospital from 8.30am until 3.30pm. Scott came and we also brought Toby, assuming we could walk with him to give him a nap when needed.

The day started out with a test as we faced a receptionist who clearly was not mindful that the people who go there often have very sick children and are not always savvy with insurance. Scott coached me on keeping my cool and I remembered that people who are aggressive are just as insecure as every body else but use it to keep people at arms length.

Any parent knows how tough doctors appointments can be with young children. Check out the list of appointments we went through today:

• Check in - height, weight and photographs
• Audiology - full hearing screening of 4 tests, which she passed perfectly.
• Speech/Language pathology - She guided us on what therapy should focus on and showed us what she can say but doesn't!!
• Pediatrician - a general check, said she looks great (of course!)
• Orthodontist - nothing to worry about right now, in fact her bottom jaw could grow and catch up with the top, we just have to wait and see.
• Genetics - Some researchers have found a link between Moebius and Gastroschisis, but no cause for either.
• Surgery - There does not seem to be any reason for surgery, and moving the jaw is too big to do until we see if the jaw grows.
• Growth - they measured her head and face with calipers as a baseline for future growth.
• Psychologist - we discussed possible social and psychological effects of Emma's physical differences and coping mechanisms, none of which we need yet but will be available to us.

We skipped ENT and Opthamology since she's followed there already.

I had to bury my germ-phobia and let Emma play with the toys in the waiting room, or risk a meltdown!

All in all it was a good day, with no bad news. What we did see was just how awesome our kids are! They both remained good natured and friendly the entire time. Emma seemed increasingly demonstrative, putting on the funny stuff to get a reaction, and marching around like she owns the place. Toby flirted with everyone from doctors to the little girl sat near us in McDonalds!

Yes, we did got to McDonalds for lunch after promising Emma nuggets and getting just an hour for lunch, not until noon.

Toby managed a brief nap after lunch,
but he's a light sleeper like me so it didn't take long to disturb him.


We got done around 2.30pm, but we couldn't leave without a visit to the NICU, where I am pleased to say Ashley was getting ready to bring Rafael home today! We saw Taryn, some of the nurse practitioners that oversaw Emma's care and our favorite receptionists. They were in enamored with both the kids. However, while Toby was fading fast, Emma was wired up and bouncing off the walls, to everyone's delight!

As you might expect, both of them passed out on the way home

and Emma managed a small nap at home.

I could probably use a nap, according to Scott, after a long draining day. At least the kids will be in bed early!

Princess

Today I let Emma skip her nap and then got her princess dress out for
her, the first time since her birthday. (she's really into dress-up
now!)

I asked her to take something out to the kitchen and she agreed. On
her way she stopped, turned to me and said "say "thank you princess"
mummy"!!!

Cute - for now!!

Party Time

I know it was over a week ago that we had Emma's birthday party, but better late than never, here are the pictures from her special day!

We started out in the morning with breakfast in the playroom (dining room sans furniture!)
and by giving her some gifts from us, as well as her princess dress from Nanna and Pops.

Princess Pops!! (Toby is not convinced!)

New boots!!

Then we went downstairs to play some golf and play...

Before Skyping Gran & Gramps (my grandparents), to whom Emma served play-tea with her new tea-set!

Then it was time to put the kids down for a nap and finish preparation for the open house at 4pm. I granted Emma's wish of wearing her dress to bed (since it is actually a nightgown!) however it soon became clear she would not be sleeping! I let her get up and play rather than keep yelling "I'm ready to get up" and wake Toby!

I made a pot of meatballs (36 to be precise) and chicken cacciatore (7lbs of chicken!) and we also got in some roast beef with rolls. Julie kindly made a popular buffalo chicken dip and Chrissie brought a delicious potato salad (apparently - it was gone before I tried to get some!)

We had a Princess Dora cake, brownies and ice-cream in the middle of the party, after a round of Pass-the-Parcel.

Here a few pictures that our friend took with my camera. There are more we don't have yet.

The pretty princess herself...
On her throne!
Opening gifts...

Turning everyone into a princess...

The princess had a great time, but as the clock struck 8, the nap-less girl could not keep her eyes open and fell asleep on her knight in shining armor...

Walking tall

Toby has found a new skill and he is all about it...

This was yesterday...



And tonight - a dramatic improvement...

He's so excited about this new skill. I remember when Emma started to walk, her speech excelled soon after. Her therapist said that often happens and I'm hoping it will with Toby. Right now he could care less about using actual words, although "Dada" is clear as day!!

Birthday girl

It's been a long three years, as any parent will tell you! So much happens in the first three years of a childs life. And Emma has been no exception - but exceptional!!

Three years ago [yesterday] I gave birth to my little princess, with no idea what lay ahead, or how much love I was capable of.

In fact the first three months were so incredibly eventful that it makes the rest of Emma's life look like slow motion! But looking back it has gone so fast, maybe too fast.

My focus has been on Emma's health and overcoming the challenges that she has faced. As intentional as I have been about that, I also made it my mission to savour and capture the precious moments of joy and excitement that came as rapidly as the challenges.

The Triumphs

Starting out with so many challenges you might forget that challenges can end in triumph, and who doesn't want triumphs!! I thought it would be interesting to take stock of them...

Gastroschisis - repaired! While Emma still struggles with constipation, her bowels are largely fully-functional.

Reflux - gone! The major cause of her apnic episodes, and treated with surgery, then medication, finally we see no signs of the problem that was.

Sleep apnea - resolved! The medical struggle with the longest outside intervention!

Developmental delay - removed. Therapy and Emma's own resilience have helped her to catch up with her peers in many ways. She still faces challenges to her independence that are exacerbated by her small stature, but we are confident she will overcome.

Feeding - improved. Emma is still on a feeding tube for 50% nutrition and 100% hydration, but that is only one-side of the story. One year ago Em would consume just a couple of tablespoons of pureed food at one sitting. Today she can eat many of the foods we all eat, and will eat a toddler portion - albeit a picky toddler!!

We've faced concerns about ear infections, hearing, flat feet and I'm sure other things. One thing is for sure, Emma has been healed in ways we couldn't have known, and has demonstrated grace, determination and aplomb (look it up!).

Since pictures say more than words, here's a look back at the past few years...

Precious one.

This is Emma on the way to church this morning. Love her!!

Happy birthday princess

It's Emma's 3rd birthday today (although she has no idea since we
celebrated last week!!) and I miss her so much. Toby too, and Scott,
but it's not their birthday!!

You see I'm not home, I'm a couple of hours away at a Christian womens
conference. It was an easy decision to come, but oh, the struggle to
leave!

I realized I have never left Toby overnight, and only left Emma a
couple of times. The two people I spend all my time with. Well, I
hugged and kissed them until they pushed me away!

They were excited to spend the day with daddy, of course! I called to
say good night to Emma and was awed by how good she sounds on the
phone. When she said "I miss you mummy" I could have melted!

The conference is awesome and I'll share the experience with you later
(after I get you the birthday party pictures!)

Answered Prayer

No matter how you choose to explain it. there is no escaping the fact that Emma has been markedly improved these past couple of days in her eating. Since I prayed earnestly for God's intervention, versus a toss-away cry of frustration.

Take today for example, no gas or gagging between bolus feeds and she ate scrambled egg and toast for breakfast; chicken nuggets for lunch; and pizza and ice-cream for dinner!

What makes all the difference is Emma's attitude and demeanor. Comments like "I'm ready for more egg now", "I want more chicken nugget" and "I'm going to eat my pizza all up" are sweet music to my ears and I will jump through hoops to hear them!!

It made a world of difference to a potentially fraught day! I woke up with a head full of lead, and gunk, with a schedule of an planning meeting at 11am for Emma's pre-school therapy and an appointment some 15 miles away at 1pm with Emma's pulmonologist.

The first meeting went well, and mercifully quick, finishing ahead of the 12pm request! Emma will get 30 minutes of speech therapy and 45 minutes of physical therapy weekly, and just 30 minutes per month of occupational therapy. Since the latter should be Melissa, and she can not shut-off her OT side, I know Emma will get informal coaching whenever we see her personally!!

45 minute drive down to the city (that's right, 15 miles takes a long time round here!), Emma having passed out early in the drive, and we get to Children's Hospital. As we sat waiting for our appointment who should walk in but Ashley, obviously a daily visitor there, but not usually in the same area! That was a fun coincidence.

We also saw Emma's surgeon, the doc who delivered her, and the team who gave me pre-natal care. Emma blew them all away. (Hi Laura!!)

Our meeting with Dr. R. went great. He was astounded by her enunciation (and he's not the "astounded" type!) and thrilled with her progress. I was worried her weight would be off after her decreased appetite of recent weeks, but she was still on the curve.

In fact, after a short time he just told me "I really have nothing to say here!" Unless we report an increase in snoring or other apnea symptoms she should be of little concern. Apparently kids adenoids and tonsils get large around 4 or 5 so we could see a recurrence of apnea then.

Dr. R. also said that Emma has much more movement and control than the other kids he sees with Moebius. In fact he is not used to the conversations we were having concerning her speech and eating, rather more serious things like airways which is no longer a concern with Emma! (I'm interested to see what the craniofacial surgeon says next week at our big appointment - he hasn't seen her in two years!)

She cracked us all up while playing a game on my phone. The nurse practitioner said "is that an orange?" and Emma responded with "No, it's a nectarine." Well okay then!!

It's been a good day.

Hay Ride

On Friday Scott took Emma for her first hayride, with our church. (For those of us not from the US: A hayride is a pleasure ride in an open truck, wagon or sleigh which has been decorated with hay or straw and similar farmlife paraphernalia. In modern times it is usually organized commercially and takes place at night.)

Apparently Emma told Scott that "it's not a wagon, it's a dump truck!"

After the ride on the wagon there was a large bonfire, for roasting marshmallows and cooking hotdogs!

Sitting by the fire with Lisa

It's been a while since we grilled some hotdogs (microwave is so much easier!) but it seems Emma likes the flavor and was stood open-mouthed, waiting for as much hot-dog as Scott would send her way! She even had some marshmallow...

Emma and Josiah

Two thumbs-up!

When they got home they both smelled of the fire and I had to give Emma a bath - but not before she bounced of the walls a few times, so wired after the fun evening!

coming clean

Yesterday we had Emma's birthday party. 47 of our closest friends and family descended on our house for a celebration of Emma's birth day, yes, but probably more so, the past three years of her life. It was a great time and I'll post pictures and details in the week when I've had chance to process everything!

Despite having an extra hour in the day, due to daylight savings time change, when Toby woke me up at his usual 6AM hour - which was 5AM today! - I gave him a bottle of milk and then put him back to bed! We all slept until around 7.30AM (8.30AM if the clocks hadn't changed!).

For the first time in months I had to be at church early (8.30AM) to work in the sound booth, and give the announcements in both services. It was a mad dash to get ready, and the inevitable "what to wear?" question (only a problem when one has to stand in front of the congregation!).

I made it to church about 8.45AM to help as best I could. Taking the kids to their respective classes, I was told that a couple of weeks ago Emma had been choking on a gummi candy during her class. They knew she was not allowed them because she can't chew them yet, but she took someone elses!! Her teacher realized then that she did not know if they could do the Heimlich on her, or any other resuscitation issues. I had not thought about it myself either!

After delivering the kids to the nursery I went from sound booth, to stage front, back to sound booth before someone told me they needed me to go to Emma.

I ran downstairs to find her crying hysterically saying her belly hurt. D'oh! I'd given her a bolus of formula before service and had not vented her a second time. I immediately did that, but she was at flood stage and "want to go home." That was not an option since Scott was also needed to serve communion and prayer support!

I sat with her in the lobby until I was needed in service. Then Pops brought Josiah to church and Emma agreed to go back downstairs to her class for the second service. (We haven't been there for two services in a long time, so its not like the kids are always there for 4 hours!)

I was able to sit and listen to the message during the second service. PB is preaching a series on the book of Joshua. (It's been really powerful and as soon as we have recordings I'll start posting them each week!) Today it was Joshua 10 - The day the sun stood still.

Among all the great points, one stood out to me.

On the day the LORD gave the Amorites over to Israel, Joshua said to the LORD in the presence of Israel:

“Sun, stand still over Gibeon,
and you, moon, over the Valley of Aijalon.”
So the sun stood still,
and the moon stopped,
till the nation avenged itself on its enemies,

as it is written in the Book of Jashar.

The sun stopped in the middle of the sky and delayed going down about a full day. There has never been a day like it before or since, a day when the LORD listened to a human being. Surely the LORD was fighting for Israel!
Joshua 10: 12-14

You may choose not to believe the trusted and authenticated scriptures, but I do and this was powerful. PB then posed the question (paraphrased) what is the big "ask" in your life? What is the seemingly impossible want, that you have never, or would not pray out loud, as Joshua did here?

The scripture does not say that God told him to ask the sun to stop, or give prior indication that it would when he prayed that. (A similar situation can be found in 1 Kings 18 with Elijah.)

I knew right away that my "ask" is for restoration in Emma's body. Not that I doubt God's capability to restore the nerves in Emma's face, or heal the other physical difficulties she has, it's just that I have always doubted the size of my faith to call on God to move. Then of course, I submit my will to God's, and so I accept that His will for Emma may not be as mine.

Towards the close of service we were called on again to attend to Emma. This time I think she was not really in distress, but coughing because she (and Toby and myself) have a cold with a cough. I decided to bring her upstairs and we went to the altar to pray. For the first time, in a while at least, I cried out to God to heal her.

What surprised me is that I broke down - I'm not really a crier! But as we prayed for the little girl, coughing in my arms I was forced to deal with the situation.

You see things have been tough lately. Since Toby and I got sick, Emma has been suffering increased constipation, extreme belly gas which requires frequent venting if anything works at all. She won't eat any significant amount of anything, and only a little cheese when she does eat - not a problem if the formula was not exacerbating the gas!

Sure, we're getting through it, but I feel like we have taken a giant step back to where we can't leave her with other people that aren't 'trained' on how to vent her etc.

My heart aches for my little girl and the "little" symptoms she has to cope with. It's so frustrating to not have the solution, or even be able to ease the situation. And so I turn to the highest power, in all powerlessness and ask for healing, and also wisdom and strength!

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5: 16-18

Toby's talent

Here are Toby's first recorded steps, of which there are more and more each day!!



On Monday when we were driving around in the car Toby started to sing along with one of the songs on my CD. I filmed him doing it again at dinner...



Oh, and the band? Toby Mac!!!

Nostalgia

When I was out the other day I saw these toys, I remember them from
back in the day!

I'd love to get the record player for the kids, even just so they know
what was around before MP3!!

New Steps

Toby took 3 steps yesterday evening, and today he took at least 6 in one go!! We got it on video, and I'll post it as soon as I can get it to work!!