Swallow Study

Today was the big day of Emma's swallow study. What is that? Let me explain...

Emma was given a small amount of liquid to drink that contained barium. While she drank it she was sat in front of an x-ray video machine which showed the path of the barium from the cup and down her throat.

The purpose of the study was to see if the liquid, and therefore any other substance she ingests, took the path to her belly or if it went into her lungs. The latter was possible because cranial nerves are involved in the swallowing process and Moebius Syndrome is a disorder of cranial nerves.

The good news is that of the small amounts they gave her nothing went in to her lungs. However the process of her swallow is different than a child her age.

Firstly Emma has microagnathia (small lower jaw), a very small tongue which does not come out much past her lips, a high pallette (roof of the mouth), and she is unable to close her lips. If you watch yourself eat you'll see you close your mouth (I hope!) to create a seal while the tongue pushes the food back across the roof of your mouth. Not so easy when the parts are not the optimum size.

Then, once food gets to the back of your mouth/tongue it triggers a swallow (cranial nerves carry that message from the brain). Emma does not swallow at this point, she swallows when the food is further down her throat. So, if we put too much in her mouth when she does swallow there is too much to handle and it could leak into her airway by mistake. Also it took her 3 swallows to clear just a small amount of liquid.

This means she needs to eat in very small doses and swallow several times between spoons. In reality this could mean several minutes between spoons as Emma does not swallow very often and is too young to comprehend the instruction, we think. Time and maturity will be the keys to improving her eating capability as she has to learn to eat in the same way most babies do from day one. She's just starting very late and with additional difficulties.

The speech pathologist did say that she thought it would help if Emma was able to close her lips. You can see here that her top teeth are exposed because her top lip is attached to her gums...

I had previously spoken to her plastic surgeon about a lip augmentation that would give her that ability so it is likely sometime in the future. She still wouldn't be able to move the top lip, but it would cover her teeth and the bottom lip comes up.

Both Scott and I were able to take Emma, and one of her therapists, Melissa came too. We didn't know Scott would still be off work so Melissa had planned to come. I had to stand in the hallway during the study due to the x-rays. Interestingly the staff there didn't notice my pregnant belly until I pointed it out!

Standing outside is hard because you have to hear your child scream and not be able to go to them. She settled down after the speech pathologist let Scott feed her!! D'uh!

For once I was the good guy and got the comfort hug after the bad people made her eat!! It was all over in under an hour, from check-in to leaving which was great.

Compare: Emma today...

Emma one year ago...

Vacation story

It was our summer vacation last week. While we were really looking forward to it I couldn't forget that with no nurse overnight one or both of us was facing 7 nights of little sleep. Would it be a rejuvenating vacation or exhausting week?

Here's how it went...

Day 1 - Saturday
We packed the night before so once the nurse left I got up, showered and packed the last few items. Once Scott got up, and then Emma we were really ready to hit the road and by 8.30am we were on our way.

We arrived at the boardwalk about 10am and after 10 minutes it started to pour with rain! It showed no signs of stopping so we headed to a diner for some brunch until we could pick up the keys to our apartment.

Day 2 - Sunday
The weather was still pretty gloom on Father's Day so we were stuck around the house for most of the day. Scott made chocolate chip pancakes for everyone's breakfast, played some Wii and visited other friends who are here on vacation for dinner.

Day 3 - Monday
We were up pretty early thanks to Emma but the day was looking pretty gray. Still, after 2 days here we were determined to hit the beach regardless. Our resolve was not dampened by the occasional rain showers!

I had been unsure what to expect of our beach experience with Emma so mobile and curious. It wasn't ideal for the first day. We decided to try a nap on the beach rather than heading home, but she only got about 45 minutes. She managed to rub either sand or sunscreen in her eye so it was red and watery.

By about 2.30pm I was tired of trying to keep Emma out of trouble and Scott took her down to the water. I assumed she'd have a paddle - I hadn't been anywhere near it so I wasn't sure of the temperature. About a half hour later Scott brought her back soaked from head to toe! He only took her out because she started to turn purple!

I hadn't brought a change of clothes for her, or a towel - perhaps naive to think she wouldn't really go in that deep! So I dried her off with our towel and borrowed some clothes before bringing her home for a bath and food.

We headed out to the boardwalk in the evening, leaving Emma with Grandma Ellen and Pops. We had a great time and it was awesome to be able to stay out later than 10pm!

Day 4 - Tuesday
Learning from Monday we did a better job of planning ahead for the day. We put Emma down for a nap at 11.30am and ate lunch at home before we headed to the beach. Grandma stayed home until Emma and her cousin Josiah woke up. When they did Scott went home to bring them to the beach.

Before that however we took advantage of our freedom and both went swimming in the sea. It was freezing at first but with the water at 70 degrees it was a quick adjustment. It was great to have some fun and not be worried about the baby.

Emma with Grandma Ellen

Cousin Josiah

Not long after Emma arrived I wanted to see her in the water for myself. As you can see she really did love the water. I was very pleasantly surprised.

Later on as we walked along the beach she kept trying to steer me toward the water! She was in dry clothes so I declined. However, as I soaked up a few rays Scott took her for a walk.

After a while I looked around for them and saw they were at the waters edge. I was horrified when I saw Emma crawling on the sand where the water came up. Before long she was soaked, as you can see...

I couldn't get mad though - she was loving it! Clearly she is fearless and even a wave splashing in her face didn't phase her! She did not want to leave!

Later that day the three of us and Aunt Kimberly visited the boardwalk and I challenged Kimberly to a round of Dance Dance Revolution in the arcade. I'm sure a heavily pregnant woman jumping around was a sight to see. Well, judge for yourself... (I think I kept up pretty well!)

Day 5 - Wednesday
After a very late night for Emma she passed out cold by the time we got her in bed and didn't stir all night. That made my job much easier, however when I did get her up I realized I hadn't changed her diaper in the night like usual and apparently it had been necessary. Sheets and all went right in the washer.

Not long after Emma's nap we hit the beach for no more than an hour before torrential rain hit. You've never seen a faster clean up!!

Earlier in the week I dropped my camera in the sand but it was still functioning. For some reason when we got back today it was not working properly. The only picture I took today was this one - Christina reading a book!!
When we were waiting for dinner to cook Emma was at the door scoping the outside and she started taking her hands away. We found Kimberlys camera to capture the new found skill before she quit on us. I'll get that to you ASAP!

Vacation story pt 2

Day 6 - Thursday "Scott's 27th birthday"
Despite it being his birthday Scott got up fairly early as the forecast was for a hot sunny day and we had not seen one of those this week!

We were on the beach by 9.30am and almost right away Emma wanted to go for a walk, and she wanted to go right in the water! It was pretty warm so I let her paddle but was trying not to get her diaper wet just yet!

The rest of our friends arrived around noon and we were on the beach until after 6pm. Emma went home for a nap in the middle of the day and was back, ready for more!

While we were packing up to go home Emma was sat in the tent with our friends 5 year old daughter. Emma loves older kids, and she especially likes Mikenzie. Kenzi found it odd that Emma was staring at her and said "stop looking at me like that!" We explained that Emma can only look like that! Kenzi was quiet at first, but we explained how smart Emma is and Emma was using her sign language. At one point she looked at Kenzi and signed 'friends' without any prompting. I almost cried it was so cute!

After showers Scott and I went for dinner with two of our friends and then to the arcade for him to spend the quarters Emma gave him for Father's day!

It might sound crazy but as we prayed before we left I asked to get a tan! Might sound silly but God does hear every request! However, rather than waiting to see if I would get a tan I did what I could to get the desired results and was a little sporadic with the sunscreen. Needless to say I got burned (most of us did!). It was a good lesson in waiting on God to answer prayer instead of continuing to take matters into your own hands!!

Day 7 - Friday
The forecast was good for today, with storms possible in the afternoon. Well that's still a good day on the beach!!

We were on the beach from 11am until 6pm! The weather was great, the water warm and plenty of waves to jump over. We kept Emma with us the whole time and she ended up sleeping for a good 2 hours, albeit only after she was super tired!

After showering we all hit the boardwalk for junk food and arcade games. We got home about 11am and some how Emma was still awake! She slept well through the night and I expect will be pretty sleepy on the ride home.

(Did you notice that the better the weather the less I used the camera? Well, I was on vacation too!!)

Revived

Don't ask me how but I picked up the camera yesterday and it was working again! When it's off the shutter doesn't fully close still, but it will do until we can get a new one.

Pictures and videos will be coming!!

R.I.P.

All good things must come to an end and unfortunately today was a day that we had to say goodbye to my beloved camera. No ordinary camera, it was a gift from my parents for my mission trip to Africa in 2004. During that trip the camera served me well.

Since then we have used the camera to take thousands (I'm not kidding) pictures of our lives, and especially Emma. The video capability was awesome and brought you all the great classics like Emma's first laugh, sitting up for the first time and generally funny behavior!

I'm sure that technology has moved forward a great deal in 5 years, but I am skeptical that we can find an affordable replacement of that caliber.

Not to mention I don't know when we'll be able to bring you your regular dose of Emma-time.

Watch this space!!

Rainy Day

What miserable weather we had to day! It rained all morning. It didn't hold us back though! The three of us went to the hair salon where I got a trim and Emma got a repair job! She was really well behaved. What was really cute is that she had a baby gown!!

You'll be pleased to hear I was actually happy with my haircut for once. A combination of good communication and minimal distractions!!

This afternoon Scott and I put Emma down for nap and hit the road, leaving her in the care of Grandma Ellen and Aunt Kimberly. Our destination - the Phillies game!

The rain was light at the start of the game and held off for all 4 of the game hours! The Phillies lost in the 9th inning, however we had a great time watching the game live. A few foul balls came close a few sections away. Someone got hit by a ball and there was a brawl across the stadium!! Love the ball park!

Despite a hearty brunch before we left I could not resist getting some fries and cotton candy during the game!! Eh, I'll save a few calories tomorrow!!

A rainy day off beats a nice day at work!!

Hair Today

So I'm pretty sure that if there was a handbook for mothers somewhere in it would be guidelines for cutting you childs hair as all mums do it. Last night I went ahead without the guidebook and cut Emma's hair!

The good news is that hair grows back, the bad news is it takes a while!!

I decided to even out the back of her hair which was quite unruly. I did it after her bath and had her sitting on the changing table with a book while I chopped. What I did not account for was her torticolis, which means her head tends to tilt to one side.

It looked great when it was done and I put her to bed. (Scott was out at a meeting!!)

In the cold light of day one side is longer than the other. Thankfully I have a hair appointment tomorrow so I am hoping she will take pity on my child and fix the damage I did.

Lesson learned - leave it to the professionals!

BRAT 09

This past weekend was the Bible Read-A-Thon at our church. Starting Thursday evening we lock the youth group (5-15 teenagers!) in the church (actually the old parsonage this time!) and taking it in turns they read the entire Bible cover to cover. The purpose is mainly to raise sponsorship money for Speed The Light (a fund supporting missionaries), but also they focus on the Word of God while having fun.

For the youth leaders, Scott and I, plus 3 other adults we take shifts in supervising and participating. This year I was home over night and during naptime so that Emma maintained her schedule. But as soon as she woke up we headed over to the church. Scott spent Thursday night there but came home in the early hours of Friday and Saturday nights.

Emma is incredibly social and it's never more apparent than when she spends time with many people. We saw her increase vocally after visiting with my family at Christmas, and after this weekend she just seems so much more confident.

We are blessed with a youth group of kids that love children and since the leaders have 4 children between us, that makes our lives much easier at events like this. Emma was able to play with our Godsons as well as Aunt Kimberly and the other teens. I don't think she came near me until she was getting tired!

Despite spending so much time in a different place with lots of new faces and no air-conditioning (not pleasant!) she was so well-behaved and really did us proud. I only hope it won't all change when she can walk and talk!!

One of her favorite new experiences was playing with Christina's guitar!! She gave her permission, really. As you can see here, having an audience was quite fun for her too!

We did try to practice walking, but she wasn't playing ball! We tried it a bit at home today and she's definitely getting more confident. She has started getting around on her hands and feet, not knees! Next step is to stand upright!!

Sign of the Times

I've entered a new phase of my pregnancy. It's the one where people are in no doubt I am pregnant and not just fatter! Previously people have asked in a way so as not to be insulting if I was not actually pregnant! It's actually more of a relief because while I feel like a walking blob I clearly have no just 'let myself go!'

It was never more apparent than Sunday while I was giving announcements to the congregation in church. Stood in front of everyone, with a microphone as I do every Sunday, but this was different. As I opened with a welcome to new guests I suddenly got really emotional and choked up. I think I avoided all out crying, just! I'll keep it to a few words next time!

It may/not surprise you to know that there are still people out there who don't hold the door open for pregnant women, even if they are also carrying a toddler!!

Physically I am noticing more aches and pains, especially when I'm trying to sleep or after something mundane like vacuuming. I do still have spritely moments where I'll run up the stairs (actually, it's more like a slow jog, but faster than a walk!!) or generally do something I wouldn't think twice about 6 months ago.

Last week I was reading up on the latter stages of a normal pregnancy - the parts I know nothing about, like frequency of doctors visits etc. It hit me that I enter the third trimester in a couple of weeks, and have just 14 weeks to my due date. Based on how fast the past 6 weeks have gone it will be here fast.

As the summer starts up I feel like I'm doing pretty good. I have gained a total of 30lbs - yes, that's more than I should gain for the whole time, however I will be doing my best to keep any additional gain to a minimum. And while it sounds like a lot I am still able to where pre-preggo t-shirts of mine!

Cankles featured pretty heavily in the last pregnancy so they haunt my nightmares! The squooshy tight feeling around my ankles was not a feeling I have forgotten, nor wish to repeat! Keeping hydrated will be the only way to fight it.

Emma has 4 hospital appointments in August and we will be doing lots of coaching on our goals of walking (close), talking (emerging) and eating (day by day!!). I can see our schedule eating up the time well!

In the meantime we are preparing to move her into her new bigger bedroom. There will be room for some of her toys and more space for the nurse and equipment - important as she gets bigger herself. We're doing it now so that she adjusts well and does not connect the change with the new baby. I hope it goes better than when I tried to switch her crib round!! (I'll be keeping exactly the same layout in the new room.)

We are enjoying Emma's progress so much. "You are so cute" are words we utter throughout every day, whether she is buckling her own car seat or laying in bed with us chating to herself while we try and sleep! I am proud to say that Emma even knows how to put her toys and books away when she is done!! That's my girl!

Walking Tall

Today during physical therapy we re-tried a technique to help Emma walk. You wrap a scarf around her chest, holding the ends up behind her, so her chest is supported. I tried it a couple of months ago and she was very wobbly and I just forgot to try it again.

This time not only was she balancing very well but she was pretty much walking by herself! We only loosely held the ends so we could catch her if she stumbled. She was even standing up by herself in the middle of floor!

We are so excited, and we now have the means to release our grip when she is walking - she holds our fingers with a death grip so she won't walk unsupported!

We'll get some video this weekend - we don't want to wear out the fun she's having with it by making her perform.

Oh the joy - it won't be long now.

More Emma

Yesterday afternoon Scott was with Emma while I took a shower. When I got out Scott called up to say I needed to some and see this. You do too - too cute!!

Later on she was captivated by the mirror in her toy computer...

This is priceless - we are babysitting two of our friends boys and the youngest, Aaron (10.5 mths) is now really mobile. Watching Emma and Aaron was too funny, I couldn't stop filming this. Check it out.

Strike Two

Last night we watched the Curious Case of Benjamin Button. An odd story, but really well done and really enjoyable. It was a long movie, and really is a love story but involves a child with a strange disability that sees some discrimination. I could say it was the pregnancy hormones, but in reality it was just like me to be bawling at the end of the movie! Love a good cry at a movie!!

Anyway, a small character in the movie repeatedly mentions having been struck by lightning 7 times, and being thankful he's still alive. It's actually LOL funny. With today's storms and the events I'm about to relay it occurred to me that lightning really does strike twice.

Remember how on Sunday I got so frazzled when Emma threw up and I was all alone? She topped it tonight!

Scott was up at church working, so I was eating my dinner in the armchair while Emma played on the floor near me. All was good until...

I looked over at her and saw a black smudge on the beige rug. Wondering how she found some mud (or if Scott had been wearing dirty sneakers in the house!) I went to investigate.

It took me quite a few seconds to realize that it was not mud, and indeed the same substance was oozing out of Emma's diaper. There are three important points to mention here:
1) Emma usually only poops when she sleeps - I don't know why.
2) Having been constipated, Emma's poop has been pretty firm and 'neat'.
3) She was not wearing any pants because it was humid today and I never replaced them after her nap! (I know, that'll teach me!)

After recovering from the initial shock I realized that Emma had it on her hand and all down her legs! This was so much worse than some puke! So much worse!!

I quickly laid her down and told her not to move! Deliberating between getting the wipes and getting her shirt off (which was already dirtied!) I think I worked in that order - it's all a blur.

I wiped hands, legs, feet, back to the hands! I grabbed a clean diaper and put it under her before undoing the dirty one. Unfortunately it got soiled on the way so I ditched it for another clean one.

Emma doesn't mind diaper changes, unless you hold her legs up for too long, which of course I had too! So she started crying and squirming!

Once I got her wiped and diapered I put her to one side to play while I tried to work on the 4 carpet stains. Baby wipes did not cut it so I got out the Clorox wipes which did the trick.

I removed the clearly contaminated toys, and prayed that none of the others had been hit!

I washed my own hands about 6 times, and after seeing Emma had something under her fingernails I got a bowl of soapy water and gave her hands and arms a good clean too.

After a few more washes of my own hands (don't judge me!) I was able to sit back down and finish the other 80% of my now barely warm dinner. All the while I was pretty grossed out and wondering how I might microscopically check the wicker toy basket and other toys for bacteria.

The question of whether Emma put her hand in her mouth at any point remains unanswered, I can only presume not as it was her left hand that had any significant poop on it and she prefers to suck her right hand!

So there you have it, a clear example of how one trial (Sunday) can prepare you for a greater trial ahead! And I am pleased to say that I had a sense of humor about this one from the beginning (if not tinged with a smidgen of disgust!).

Reality check

Today started out pretty good, Emma slept in until 7.45 am after a late night last night and I chose an outfit for church without feeling fat or frustrated (major!).

Unfortunately my smooth ride hit a major pothole not much later. Scott and I drove to church seperately as he had to pick some stuff up beforehand. We get there very early, before even the ushers arrive! Emma and I were hanging out when she started to gag - a sure sign that she has gas. When it doesn't subside quickly it's kind of like the warning signs of a volcanic erruption!

I rushed over to my bag, scrambling for the syringe and tube to vent the air from her belly. I connected it and squeezed her belly, but not much came out - yet she was still gagging. As you might imagine it was a matter of seconds before she threw-up.

Emma doesn't have much velocity so it just runs down the side of her face, onto her hair and shoulder and then the church chairs. On this occasion it was alot and although it's just formula, so not particularly gross, it's not the easiest thing to clean up.

What you may not have picked up on is that while Emma's puking, I have to hold the syringe in one hand and somehow get something to soak up the mess!

It's not a situation I've found myself in lately and with Scott not there I was not sure where to turn. I looked around me hoping for someone to lend a hand - I even started calling "help" but no-one came.

I was frantic and grabbed the only thing I could, a handful of baby wipes. With one hand I tried to scoop up the mess from the chair, then clean up Emma.

I finally did the best I could and set her down on the floor while I ran to the bathroom to toss the wipes and flush the tube with water.

When I got back Emma was trying to crawl and was crying because the pretty dress I'd decided to put her in was too long and caught under her knees preventing her from moving. If I had any patience left it was hiding and I informed Emma that it was about time she got up and walked so her clothing would not be an issue. It fell on deaf ears!

The day didn't really get much better and ended with me smashing a bowl! I'm just trying to get through it without anyone getting hurt!

The episode at church has stuck with me all day. It was not a serious incident - I wasn't worried about Emma choking at all. Yet I realized that no matter how together I have everything much of the time there will always be those unexpected moments that circumstances take an unexpected turn and you need help. What was most upsetting for me was that no-one came to help me!

Maybe because it was church, or maybe because I understand that every trial in life has a lesson to learn I looked for more behind this. And here is what it taught me...

Many of us have it together. The major facets of life are running smoothly and we can handle the odd bump in the road without breaking stride. However, it is guaranteed (check the Bible!) that something you don't know how to handle or aren't prepared for will come up. And when it does you won't be able to handle it alone.

Many of us are confident that our family or friends will be there when we need them. Unfortunately, despite the best of intentions they can't guarantee that. Which leaves two options: you deal with it by yourself, alone or you can turn to God. Many people don't decide until they have too, and at that point God may not be the first person to come to mind.

I have been eternally thankful that I had turned to God before things got really hard. I don't know that I would have known how to when circumstances were clouding my mind. And I have relied on Him so much since. Unfortunately this morning, despite being in church, I was consumed with what was happening and not staying calm or keeping a sense of perspective.

Thank goodness God doesn't give up on us, even when we aren't listening to Him!

What?

There is no doubt that the minds of children are often a mystery, and without the language or expressions to elaborate fully it is a fun game to wonder what Emma is thinking! For the most part Emma is a pretty placid, quiet girl though increasingly more verbal.

Today we were out shopping with friends, so Emma had lunch a bit later at noon and then Daddy came home for lunch before she went to bed. Normally she'd have been asleep on the drive home, let alone still going after food, but not today!

After watching her amuse herself (and us) in the kitchen for several minutes I grabbed the camera to capture one of those great times of random crazy behavior! (The reason that she hangs out in the doorway is that she would dearly love to go outside and loiters there int he hope someone will take pity and take her out!

This behavior is quite a departure from how she is first thing in the morning. Scott took this video when they got up today - she's probably watching a cartoon on the TV! (And yes, that's two mornings in a row I've slept until 7am!!)

Earlier this week Emma during Emma's weekly occupational therapy session Melissa brought the bubbles out again. We think Emma likes them, she doesn't really try to pop them, just watches them float! She does seem more interested in generating the bubbles, as you can see here.

While she is not able to make the pout you or I have when we blow on something, the movement in her mouth and tongue shows incredible development. While it's not easy, it is possible to blow without moving your top lip, so perhaps one day she'll be able to blow bubbles. I hope so.

Hello Gorgeous!

When he is working Scott usually has to get up between 5.30 and 6.30am. Not so since he's been off! He's been getting up nearer 8am, which is not too bad, but he's conscious he needs to get back on schedule so it's not too hard to transition back to work.

Unfortunately Scott is possibly the most difficult person to wake up. His alarm clock is an obnoxious siren that wakes the whole house, and I hate it!

On the flip side I can get up pretty quick and don't take much to be woken up. I usually get up around 6am, whenever Emma does. I'll be honest, I've been trying to get Scott to let me sleep in the whole time he's been off - just to help him stay on schedule you understand!!

Last night Scott agreed to get up with Emma today, he just needed me to wake him up and kick him out of bed. I was happy to agree and even got a syringe of water - the last resort because he gets grumpy when I use water, I discovered on Sunday!!

To avoid falling asleep on the sofa Scott took Emma out to get gas in my car and some baby food for her feeding. Apparently at the store an older woman helped them at the checkout and was talking to Emma. Once she finished serving them she said "By gorgeous" so Scott told Emma to say "Thank you." The lady turned to Scott and said "I was talking to you too!"

Too funny - getting hit on at 7am!!

Hairy

When Emma was born she was a hairy little thing! She had hairy shoulders, her head was hairy and I was actually worried she was a little too hairy!


Then as she grew the hair receded and she developed a hairline somewhat like Scotts, which is receding!! I worried that we would be working a comb-over for her!

Lots of people comment on how long her hair is getting and I can't really see it until I look back. Now she is really getting some hair and it seems to be growing in at the thinner spots too!

I don't mind taking a look back at how far she's come too!