Sophie's Journey

Toilet training- check!

2011-11-09T19:53:00.000-08:00

Don't worry, this post doesn't come with photographs :)

I'm happy to say that just a couple of weeks shy of her third birthday, Sophie is finally, officially, pretty much completely (daytime) toilet trained.

We first got her a potty when she was about 18 months old, not with any big expectations- just to let her know she could try it out any time she wanted. She had a couple of goes early on and was mildly interested, but after a while she decided she didn't like the potty itself, so that was that.

When she was about tw0-and-a-half, her daycare centre decided it was time to take a more active approach to toilet training. She's there 10 hours a day, four days a week, so we were pretty happy to let them take the lead and follow their approach at home. This basically involved using a special toilet seat on the big toilet, and plopping her on there at regular intervals so she could have a shot at it. In the meantime, no nappies.

The net result was frustrating. She showed she knew how to use it- she would go in the toilet almost every time, but then she'd get up, walk out, and within five minutes say, "Hey, I did a wee on the floor!" Wet pants didn't bother her one bit. She found peeing all around the house quite amusing. At daycare, she'd go through five changes of clothes every day.

I started to worry about whether this might be an HIE throwback- whether she was having a physical problem with bladder control, or maybe a cognitive problem with knowing when to go and when to stop. I talked to my fellow HIE friends at the Hope for HIE group, asking for answers- and all assured me this was pretty normal toilet-training behaviour.

In the end, what worked was a combination of a couple of things. First, we got a new toilet seat- one that has steps and handles built in- that made her feel secure. Then, we went on a mega sticker offensive. Every time she peed in the toilet, she got one sticker (which she liked to stick on the actual toilet seat, which was good, because it was a visual reminder of how well she was doing). Every time she did a poop (and she took to that immediately), she got *three* stickers. There was a lot of enthusiasm from everyone- treats from grandma, stamps from daycare, celebrations all round.

And gradually, I guess she started paying more attention to holding it in and letting it out at the right time. In the last three weeks, she's generally had no more than two or three accidents a week. She's also now telling us when she needs to go instead of waiting for us to ask.

She's still wearing nappies at night, but she's now no longer wearing them at all during the day, and she's even started going out without a nappy (in the early days, we'd still get her to wear one when we were out in case there was no toilet available). She went to the zoo for five hours on Sunday, went to the public toilet twice, and no accidents.

And now she's decided she doesn't need the toilet seat anymore, either. Amazing! The main battle now is that she's so independent, she doesn't want any help from anyone for any reason, and the reality is, she still needs a little help with some bits of it.

I know she might go back and forth from here, but for now it's one more worry crossed off the list :) Very proud of my big girl, who's also sleeping in her own big bed now, and putting herself to sleep every night.

The Journey, part 2: Facing the Fear

2011-07-29T22:56:00.001-07:00

As many regular readers already know by now, we have entered the next phase of this crazy little journey- we're doing it all over again with baby number two, a little sibling for Sophie.

We're extremely excited and very happy, none more than Sophie herself, who is beside herself with excitement and full of big ideas about the kinds of things you can do with a little brother or sister.

But it's here that we have to face the second wave of damage that has come from Sophie's birth- the fear factor. We've been gearing ourselves up for that since the day Sophie was born, really. I've seen psychologists and counsellors, and mentally I'm prepared to tackle the emotional issues I know will arise from having another baby. In some funny ways, I see this particular trial- getting through a whole pregnancy, birth and new baby stage- as being the final conclusion to everything that happened with Sophie; the thing we have to do before we can take a deep breath and say it's really finished.

But as with anything I haven't experienced before, there have already been aspects of this that have taken me by surprise.

For starters, I didn't expect to feel quite so terrified about the first trimester as I have. At the moment, I'm not particularly afraid that the same thing will happen at the end as did with Sophie- her cord entanglement was a freak accident that is highly unlikely to be repeated, especially with the additional high risk monitoring we'll be having. So instead, my fear has been very focussed at the front-end of things- I've almost been afraid that something will go wrong before I can even begin to face the fears that the rest of the pregnancy will bring. In the back of my mind, there's a small amount of doom festering away that all comes from what happened with Sophie- for me, that sense of "bad things don't happen to good people" is forever broken, and it's been replaced with the alternative- bad things do happen, and they happen to me.

This existing feeling wasn't helped by me coming down at 5 weeks with a virus called pityriasis rosea that may carry an increased risk of miscarriage. There's no treatment for it, and it just has to sort itself out, which took five weeks, during which time I had to see the patches of rash every day, all the while wondering what was going to happen next.

Fortunately, we've made it through the first trimester and we have a healthy baby growing away in there in all the right ways.

And now comes the second trimester, which I find carries new, different, and previously unimagined worries. Sophie is so excited to have a baby brother or sister, especially now that my belly has "popped" and she can actually see that something is going on. She pats it, talks to it, reads it books, tells me stories about how she'll cuddle the baby and give it a bath when it comes out. And suddenly, the creeping doom taps me on the shoulder and points out that she'd be very sad if something did go wrong, wouldn't she? Insidious.

Then there are the movements, which with Sophie started very early for me, right on 14 weeks. We were talking this morning about how she used to go crazy when I ate banana or strawberry, and wondering if this little one would do the same (no doubt- it's already a squirmer based on the ultrasounds). Last pregnancy I loved that. It used to make me laugh out loud. And then, at the end, it came very close indeed to killing my baby, who squirmed so much that she wrapped herself up in a death grip. This time, I don't know if I can feel those kicks and squirms and be quite as delighted- or at least, not without fear walking hand-in-hand with my happiness.

And lastly, there's the reality of all this. Until this week when I could actually see and feel my growing belly, the whole thing seemed utterly surreal. Seeing this baby kicking and wriggling on the ultrasound screen was amazing all over again, but I'm afraid now that I'm going to struggle to connect before it arrives. With Sophie, I felt an immediate connection from the day of our first ultrasound. I would talk to her in my head all day, rub my belly and think about the future. We had so many dreams for her, and thank goodness, they've all come true. They haven't for so many others, and for such a long time it looked like they wouldn't for us, either.

But this time, again, dreaming brings fear. The crushing pain of thinking it's all been ripped away is just too much. How can I let myself dream when I don't know what's going to happen? How can I set myself up for that again, just in case?

And if I don't dream, and we do get our greatest wish, and a healthy baby is ours in six months time- how guilty am I going to feel that I wasn't brave enough to love so early this time? I don't give guilt much truck- I strongly believe in accepting that you do the best you can in every situation, and let everything else be what it will be- but it's hard to avoid it completely sometimes, especially when you're all hormonal.

Fortunately the lovely hospital we've signed up with this time has an amazing array of antenatal services, including a special ante- and post-natal psychology clinic. I asked my obstetrician for a referral last week to start working on this stuff as early as I can, and they called me back within an hour. I'm looking forward to getting on top of all of this as early as possible, and like last time, I'll be taking medication if I have to. I hope to avoid it for as long as I can, but it's not healthy for anyone to have me be a total basket case for the next few months.

The third trimester is still a long way away, but the raft of fears that will come with that are already looming on the horizon, and they're pretty ugly. Not only are there the inevitable fears that the baby might get tangled up, just like Sophie, but there are fears about my own safety having a second caesarean, and after that there are very ordinary parenting fears, like worrying about how we'll handle becoming a two-child family.

It's exhausting having so much on one little plate! But then again, that's life as a parent of a baby who had HIE- I'm just incredibly lucky that I don't have things like physical therapy and developmental delays to worry about anymore.

So, my mission from here onward is to keep thinking positive, and for now, to use a psychological technique that works remarkably well- the delay tactic. Don't worry about it until you have to, which in most cases means you end up not worrying at all. Sounds stupidly simple, but it works.

It's going to be good to get some additional techniques from the psychologists, and I know that at the end of this pregnancy, I'm going to feel like I've conquered another whopping great mountain, just like the one I had to climb after Sophie was born. When I think of everything I've gained from what happened with Sophie, I know it's all going to be worth it.

I have my fingers crossed that there's a happy ending waiting for us this time- but in the meantime, as ever, we'll take it as it comes.

(A small PS- if one more person tells me to "keep calm" for the sake of the baby, my eye is gonna start twitching- just a heads up on that one. I assure you I am not running around the back yard, shrieking and flailing my arms. I'm quite calm, worries notwithstanding- if I wasn't worried, then you'd probably be justified in wondering what was the matter with me.)

Let go of that guilt

2011-07-29T22:54:00.001-07:00

[A post from July 2011, still very relevant]

I have over 300 friends on Facebook, many of whom are mums. Every single day, at least five or six of those mums post something on there about how guilty they feel about various failings. Mums with "normal" kids and mums with special needs kids alike, it's a constant bombardment every day of all the things these mums THINK they are not doing, or not doing well enough. They yell too much. They're too busy. They battle to get their kids to eat/ drink/ sleep/ quit throwing tantrums. They struggle to balance relationships, life, work.

And they feel like it's their fault that things are like this.

I'm here to tell you: Let go of the guilt. Really.

Life, it's pretty plain to see, is just like that. We live in a time where we're expected to do it all. And we want to prove that we can, because, well- we CAN. We are all amazing people with amazing abilities. The question is- do we have to do it *perfectly*? And the answer to that is, what's perfect?

Yes, life would be easier if things just went the way we wanted them to, and if we knew how to react in every situation. But life is one long learning journey, and we can't expect to get it right first time, every time. What would be the point of that? We struggle, we grow. We show our kids that it's okay to be fallible, weak, sad, and imperfect sometimes. They need to know this. They need to know that you come out of tough times, and into better ones, because you don't give up.

This is all very general, so why am I posting it here? Because one of the places I see *most* guilt coming through is in parents of HIE kids. From day one, it's hard to resist the feeling that you could have done more, or could have done differently. You could have insisted on more intervention or less during birth. You could have picked up earlier on signs that something wasn't right. Your body failed you and failed your child.

The reality? Your body grew and protected your child just the way it was supposed to. Accidents happen. You did everything you could to the best of your knowledge. And you are now adding parent, advocate, fighter and protector to your long list of jobs, and nobody can do it better than you. You were and you are strong, able and brave, and your child is so lucky to have you.

After the birth and the hospital, the guilt doesn't let up. Are you doing enough therapy? Are you catching the signs of any developing delays or deficits? Are you managing to take care of the rest of the family (oh, and all those jobs you *still* have on your list from before you were a parent)? Are you too sad, stressed, angry? Can you just not let go of the anxiety? Do you find it hard to cope with a baby who is irritable, doesn't sleep, may not be meeting milestones?

There are so many things swirling around you as an HIE parent- so many thing you want to do right, but so many that are completely out of your control. And if you can't control it, then you can't beat yourself up about it. Like every other parent out there on the planet, you can only do the best you can do.

So, do yourself a favour- let go of the guilt. Good enough is good enough. Get help where you need it, learn the things you don't know, change the things you don't like, and lean on others when you're feeling down. But always remember that you are the reason your child exists, and if you're there for them day in and day out, providing them with love, shelter, and their other basic needs, then you're doing it right.

Conversations with Sophie

2011-05-24T03:01:00.001-07:00

[Another old post from May 2011, when Sophie was 2.5]

Crazy language progress here at the moment. Every day, more and more complete sentences are coming out of Sophie's mouth, with concepts, comprehension and vocabulary getting more and more jaw-dropping every day.

Some signs of the incredibly advanced level of her language- she's now using all the words in her sentences- every one. She's using plurals (in fact, she corrected me last week when I said "feet", and she rather loftily told me, "It's "foots", mummy". Ha!) She's "reading" books by putting her own interpretation on the pictures. She questions us relentlessly about everything, and tells us in her own words what she's just heard. She has a very thorough understanding of past and present tense. She knows many positional and comparative words and uses them correctly and regularly- over, under, inside, outside, now, later, and so on.

Sophie likes to talk about other people and animals, and tell me what they're doing or what they want. Her imagination at 2.5 years of age is also quite stunning. In the last twenty minutes, we've walked home from daycare, come home to see the cat, and turned on The Simpsons (which she loves).

On the way home, we passed a dog barking behind a fence:

Sophie: "Mummy, you hear that dog?"
Me: "Yes, I do- he's barking very loud. What's he saying?"
Sophie: "He's saying, "Excuse me, Sophie. Please come back."
Me: "He wants you to come back?"
Sophie: "Yes. He's saying, "Sophie, come into my house."
Me: "What does he want you to do there?"
Sophie: "He wants me to play ball."

We were also keeping a sharp eye out for cars, making sure we didn't get squashed, and every car that passed us by, I asked Sophie the colour. She has really clicked with colours in the last month and now knows all the big ones, and a few extras. Blue, green, yellow, red, pink, orange, purple, black, white, brown- she's all over them. But I wasn't expecting her to get this one just right- when I asked what colour the just-passed car was, I would have thought white or blue was a good enough answer. But when she correctly said, "Grey!" it was another jaw-dropper. She knows grey? Whoa.

Halfway home, we talked about Sophie's beloved cat, Sheba:

Me: "Who's waiting for you at your house?"
Sophie: "Sheba!"
Me: "What's she saying right now, do you think?"
Sophie: "She's saying, "I need my mummy and my Sophie! Where's my mummy and Sophie? They're outside, right there."

Just watching the Simpsons a few minutes ago- a Halloween episode featuring the glass-enclosed aliens Kodos and Kang.

Sophie: "Look, mummy- it's a monster!"
Me: "Oh dear! What's he doing?"
Sophie: "He wants to go in the house."
Me: "What does he want to do in there?"
Sophie: "He wants to drink a bottle of milk."

Sophie is also now consistently counting to eleven and is able to "add" one plus one, or "subtract" one from two (I wouldn't quite call this a done deal yet, because it's pretty simple stuff- she can count what's there before and what's there afterwards- but it's not a bad start!). But she really flummoxed us the other night when we had friends over for dinner, and one asked how old she was. I was halfway through saying, "Oh, she doesn't know that yet..." when Sophie piped up and said, "Two!"

Double whoa.

She has a favourite story she likes to tell me about daycare lately when I ask her what she's been doing during the day.

Me: "What did you do at daycare today?"
Sophie: "I play with Anna."
Me: "That's nice. What games did you play?"
Sophie: "Sophie and Anna went driving in the car."
Me: ".... Oh, really? Where did you go?"
Sophie: "We went shoppies."
Me: "And what did you buy?"
Sophie: "An orange."

Yesterday relating the same story, she said she didn't know where they'd been, but they'd seen lots of others cars.

On the weekend, after her swimming lesson, she said, "Excuse me, mummy? I want to go swimming in the other pool."

She's also coming up with absolute howlers, like the other night when she informed daddy, "When you're a big girl, you can cook cakes too!"

She has a bright animal frieze around her bedroom wall, and can now name all 26 animals

She also makes oddly perceptive comments about a whole range of things, especially when it comes to other people- often noting that someone "looks sad- he needs his mummy" or is angry. Watching the TV mini-series of Tim Winton's Cloudstreet the other night, which features a living, breathing, and somewhat haunted house, she informed us that the house was "very dark." It wasn't literally dark in the part we were watching, but she just got what they were trying to show.

And lastly, she's now learned her full name, first and last, which neatly completes the last of the four-year-old language milestones in the Ages and Stages Questionnaire. That's right, she's scoring 100% on the 4-year-old ASQ in communication, and in fact she passes every other developmental category of the test for that age as well.

Sometimes I find myself wondering whether her brain injury had the opposite effect to what we expected, and has actually caused her neural pathways to re-route in ways that have amplified her original language potential. I don't know if it's that, or if it's just that the damage somehow avoided every important neuron and synapse in her head. I have no idea. But I am completely fascinated watching her grow and unfold, and quite astonished at the conversations I find myself having with her at such a young age.

Counting the cost

2011-05-13T21:09:00.000-07:00

I'm often telling people that Sophie made it through her traumatic start without any impacts whatsoever- and that seems to be true, so far, as far as her major developmental, cognitive and physical areas are concerned.

But it hasn't been until the last month that I've really faced up to the one area where the doctors were exactly right in their prognosis- the impact of her severe Meconium Aspiration Syndrome.

Sophie home sick from daycare with a touch of viral asthma

When a baby gets into distress in the womb, they poop out meconium, and can suck it into their lungs. Their oxygen is still being supplied by the umbilical cord, so they're not "breathing" as such- but they are making breathing motions. This becomes a major problem the minute they're born, when the umbilical cord (and therefore their oxygen supply) is cut and they go to take their first breath- but their lungs are now full of sticky meconium, and they're suddenly unable to get the oxygen they need to breathe.

Meconium Aspiration Syndrome was a major part of Sophie's HIE and contributed to her oxygen deprivation. She had the highest Grade 4 case of MAS, which means the amniotic fluid was absolutely full of thick, pea-soup-style meconium, with extensive staining of her skin showing that she'd been in distress for quite a while (at least 12 hours, by our reckoning). It was the main reason for our extended 26-day stay in hospital, because it damaged her lungs to the point where she couldn't breathe effectively on her own without supplemental oxygen. She was diagnosed with chemical pneumonitis, which is a particular side-effect of the meconium inhalation, and she also fought off two different respiratory infections requiring pretty heavy-duty antibiotics while still in hospital.

She was very lucky that she didn't develop Persistent Pulmonary Hypertension (as many MAS babies do), nor did she need some of the extra hardware that can be required- high-frequency oscillatory ventilation (HFOV) or extracorporeal membrane oxygenation (ECMO), for example.

Regardless, we were warned at the time that her risk of developing asthma and frequent chest infections/ respiratory illnesses was going to be much higher than that of the average child.

And sure enough, at about 18 months she was diagnosed with toddler/ viral asthma for the first time, after yet another round of bronchitis. In her first two years, Sophie has been diagnosed with croup once, tonsillitis twice, bronchitis three times, and has had other colds and coughs at least twenty additional times. We've had to take her to emergency once with a shocking viral rash, which she's had on two other occasions as well. Her asthma has gotten progressively worse since she was first diagnosed, often leading to periods of time where she coughs in her sleep until she vomits on three or four nights of any given week. She now has a Ventolin puffer with her at all times and an asthma management plan that sees her taking four puffs before naptime and bedtime, plus two puffs before any exercise or before going outside in the cold, plus four puffs if she has a coughing fit. We've also recently trialled a preventer tablet called Singulair that made quite a difference.

Sophie now goes to daycare four days a week, and it's there she picks up all of her bugs. It's unavoidable, unfortunately, and it's difficult. Because while I do believe that every bug she fights off will bring her better immunity- and I'm seeing that proven correct by a *decreasing* rate of illness this year versus last year- I'm also reminded from time to time that her birth is a factor we can't control when it comes to just how sick she can get.

Take this week, for example. Last week, after a few days with an ordinary-enough cold, she had a temperature and was complaining of a sore ear. I took her in to a doctor we don't normally see, and he checked the ear and found it was indeed inflamed. He didn't check anything else, and prescribed her a new antibiotic for the ear infection.

Fast forward a week, and I got a call from daycare saying that previously perky Sophie had suddenly developed a very high temperature and was very listless. I picked her up and took her straight to a different doctor, who was very concerned with what he found- she had quietly developed severe bronchitis (again), a severe throat infection (again), and a double ear infection (this is, luckily, the first time she's had those). The kid does NOT complain enough. He gave us a new antibiotic and said that if she didn't show significant improvement within 24 hours, she'd need to be admitted to hospital.

This is where we've been a little luckier than a lot of NICU parents- Sophie does bounce back very quickly, and outside of her high susceptibility to the bugs, she's a very healthy kid. Within 24 hours, she was fortunately much better and didn't need hospital admission. Because of her start, we've been very touchy about her being sick, and we take her into the doctor at the first sign of a chest rattle- and so far, she's not had pneumonia, which is our great fear when it comes to respiratory woes.

So. All in all, we don't go out of our way to avoid the bugs. I don't want to give her antibiotics every time she gets sick, and I don't want to give her the flu vaccine after last year's dramas. I think there's long-term value in her immune system getting the workout it does. But I do find myself cursing and stamping my feet a little that the prognosis on this front was right. I wish she'd escaped these impacts as well.

And I do hope she grows out of it, too- though judging by my own health, that might be a bit too much to ask. I was born with a double-sided pneumothorax that presumably also put me at risk for higher incidence of respiratory illness, and I certainly suffered it through my childhood. Now that Sophie is sick all the time, I'm right back on the old merry-go-round myself. Every time she gets sick, I get sick too, and it's even harder for me to bounce back. It's incredibly frustrating.

But on we go, still working out what works and what doesn't, taking each new illness as it comes, because that's all we can do. I'm so lucky to have an employer that is flexible and sympathetic, or else I have no idea how we would manage.

At least we've learned some absolute truths by hard experience- for example, that full-lactose milk is a very bad idea for our little asthma sufferer- and all those who don't enjoy changing beds/ clothes/ cleaning vomit out of carpets on endless repeat...

A great day at the races

2011-04-26T01:28:00.000-07:00

Or the football, more like.

You may remember me explaining last year how much Sophie loved her favourite football team (and ours), the Fremantle Dockers.

Well, given another year, Sophie's obsession has just continued to grow. She's been to every match this year and is practically leading the cheer squad. Last night, at the ANZAC Day match between Fremantle and the Western Bulldogs, it came right down to the wire. Every person in our stand was on their feet in the final minute, and Sophie was screaming and shouting with the best of us. In a rare moment of quiet, she yelled, "GO DOCKERS!" and got everyone started again.

So, at the end of the match, when the Dockers had won by eight points, I took her down to the fenceline so she could celebrate the best way possible- up close and personal. At the end of every winning match, the boys run out to all corners of the ground and thank the crowd. They also each get a hat to give away to a member of the crowd. 37,000 people in the ground, about 20 hats to give away, and guess who got one?

Yep. Number 23, Chris Mayne, made a beeline for Sophie from a good distance out (it's hard to miss the cute toddler), and deposited it on her head.

She was so excited. So, so excited. It just blew her little mind entirely that a Docker had run out of nowhere and *given her a hat*. All the way home, all day today, she's been saying, "The Docker ran up and gave Sophie a hat!" It's going to become legend in her mind, and I doubt we'll hear the end of it for a long time.

What's particularly good is that Chris Mayne, who gave her the hat, is (besides being one of the best up-and-coming young players) an ambassador for the Starlight Foundation, which supports Princess Margaret Hospital, where Sophie had her treatment. He's an ambassador, amongst other reasons, because he spent a fair bit of time in that hospital himself as a kid. Chris was born with a cleft lip and palate, and had a number of surgeries and therapies during his childhood. These days, he's overcome those challenges to become a real inspiration for and supporter of sick children in Western Australia.

I can't think of a more appropriate person to have given Sophie her beloved hat. I've emailed the club with a thank you, which I hope he gets to see. I love that young players like Chris are using their position to make a positive difference to the world, and it's great that such a simple gesture can make a kid like Sophie so happy, too.

You can read more about Chris Mayne and his work with the Starlight Foundation here.

Free!

2011-04-03T21:32:00.001-07:00

As mentioned a couple of posts back, we've been waiting for Sophie's official discharge from the last of her therapies, those being physiotherapy and occupational therapy.

We got those discharge letters last week, a couple of days after returning from our annual holiday to Sophie's birthplace of Albany. There was a nice sort of confluence to the timing- every time we go back to Albany, we're walking through our history, and it always brings up fresh memories of Sophie's birth and first six months.

It helps, of course, to have Sophie with us now, walking, talking, and doing everything (and more) a two-year-old should do.

Sophie hanging out in Albany

So. I remember when Sophie was first enrolled in all of her therapies, and we wondered if it was ever going to end. So many other parents have asked me the same thing- how long will we have to wait, if everything is going well, to be free of all the worry?

I guess this is the point where we can say we really are free. Sophie will still see her neurologist once a year until she's five or six, but that's now about looking at how well she's doing instead of assessing her problems. Other than that, unless something specific comes up, we won't need assessment or therapy again. It's a very huge relief.

Sophie out to breakfast

If you're a local, you may have seen our story in the news lately as we try to raise awareness of the treatment Sophie received, and the organisations who helped us- Princess Margaret Hospital, Miracle Babies, Royal Flying Doctor Service, and the Hope for HIE Foundation we're developing.

In the West Australian
In the Sunday Times
On Nova 937 breakfast radio
And tomorrow in the Albany Advertiser

You can find the Hope for HIE Foundation Facebook page here, and we'll be adding useful links and resources to that very soon while we continue to work on building the official website. In the interim, you can also connect with other HIE parents at the Facebook Newborn Brain Cooling page or at the Yahoo HIE Support Centre.

There are some links in the right-hand column to significant posts on this blog if you're new and seeking to find your way around, and as ever, if you want to get in touch, please use the email link on the right-hand side. For the record, I do use a pen name for this blog.

Thanks again to all who have followed Sophie's story so far. We plan to keep this blog running until she's around three, but we intend for most of the information to migrate to the Hope for HIE website when it's up and running.

A tale of two birds

2011-03-14T07:33:00.001-07:00

Excuse the double post- my pattern around here is months of neglect, then a week of remembering all the things I was going to say before I disappear off into the ether again for a while.

Back in January, I was watering the garden one warm summer evening when I happened to glance up at the right moment and notice that the ever-present dove's nest in our thorny lemon tree appeared more occupied than usual. Over the two years we've been living here, our incompetent little dovely friends have had a few shots at moving in there.

The first year, the nest fell out before anything happened. Last year, the eggs fell out and smashed before any babies could hatch. So this year, imagine my surprise to find not one but two little baby doves all tucked up in the nest! They did it! Yes!

Two little turtledoves, sitting in a tree

My excitement was slightly dampened by the fact that the nest was, as ever, in a truly stupid place- exposed to the wind and rain, at the very end of a bouncy tree branch, and quite averagely attached to said branch, too. I was a little worried about that, but hey- it's the second longest, hottest, driest summer on record here, so rain? Wind? No way!

And then I went inside, and discovered that the news was forecasting not just rain and wind, but an actual cyclone to hit us in just two days. It was somewhat surreal. Outside, everything was clear blue skies and calm summer, but rapidly heading toward us from the north was a monster storm system, and I feared my little doves were in trouble.

As it transpired, they were- but they didn't even make it to the (non-event) cyclone before disaster struck.

The very next day, my husband and Sophie were out the back taking their turn to water when Paul noticed something moving on the ground beneath the lemon tree. He had to get right up close before he could understand what it was. One of the baby doves had fallen from the inferior quality nest and had landed on the ground, where it was promptly swarmed and overrun by several hundred stinging red ants.

Oh, the horror. I can't even tell you how hideous it was. This poor, tiny handful of bird was fighting like the devil, so covered in ants that it was impossible to see where their hateful little bodies ended and the skin and feathers began.

I was called out to assist and found myself all in a dither. I can't bring myself to hurt any living thing- I won't even squash spiders- but this little bird seemed impossible to save. We talked about the fastest way to put it out of this awful misery, but as we did, we had Sophie standing there asking if the little birdie was okay. We had the little birdie kicking and squirming and pecking ants off itself. We had the mother bird hovering on the nearest fence, pacing back and forth.

And we looked at each other and realised we had to give it a chance.

Call us completely crazy, but both of us had the exact same thought: there was a time when Sophie was so sick that people thought she might not make it, but she refused to give up, and so did we.

I know, I know, it's just a bird. But as I held it in my hand and felt the little heart pattering away beneath my fingertips, I knew we couldn't let it die.

So, operation bird rescue began. We settled the baby dove in a bowl of water up to his neck, and waited. After half a minute, the ants began to float up, dead. Hurrah! The only problem was, about four hundred of the little devils died with their pincers firmly embedded all over our birdie. Next phase? Tweezer removal of every single ant.

It took me more than an hour and a half to get every single one of them out of every single fold of skin, clutch of feathers, earhole and even eye socket. It was quite the surgical endeavour, I can assure you. And the whole hour and a half, Sophie stood right there, watching in her observant way and telling the little birdie it was a good birdie, and that mummy-daddy would help it.

While I was plucking, Paul was investigating the likelihood of the bird being accepted back into the nest after so much handling, and he discovered that doves are different from the usual stories you hear, and will happily take back fallen babies.

So! All the ants gone, my little fighter had decided I was the new enemy, and he was trying to bite my finger off. I gladly parted ways and put him back in his nest, and then we waited.

Ten minutes later, mum was back in there with both her babies, and all was well. Phew!

That was just the beginning of an intensely stressful week. We placed a "dove catcher" under the nest, comprising a paddling pool with shallow water as an ant-proof moat, with a large towel-filled crate in the middle to catch any falling birdies. The cyclone blew through the next day, and was good for only a few drops of rain and a couple of big gusts of wind. We went out and checked hourly, by day and by torch at night. Every time, the doves were still there.

Just one week later, I was on my usual dove check when I found the nest was empty. I checked all over the ground, but there was no ant-drama going on. I finally found my doves sitting on the other side of the tree, and I knew they'd fledged.

One day later, they were gone.

My ant-chewed baby dove, all grown up

I haven't seen them much since, but on Thursdays, when I work from home, I can hear a dove cooing gently in the lemon tree outside the office window, and I think it might be one of those babies, all grown up.

I can't believe we managed to save this dove that seemed so lost- and it was just one of those stories that I had to share, because it's so nice to see the little guy win.

And for Sophie, it's been a landmark moment in her little life. This all happened two months ago, which should be a geological aeon in Sophie time. And yet every couple of days, she'll retell the story of the dove. "Little owie birdie had owie ants. Mummy-daddy help you. Mummy say, "Go 'way, ants!" Birdie lives in tree. Bye-bye, birdie!"

Moments of kindness and compassion make such an enormous impression on her at the moment. I think she's going to grow up to be a very caring human being.

Slings and arrows

2011-03-14T06:22:00.000-07:00

I've just been reading back through recent blog posts, which are coming less frequently as Sophie gets older and needs less medical attention, and I couldn't help but notice the striking level of what can only be called anger in my posts about her developmental assessments.

I sort of want to reach back to last year and slap myself a little, because really- it would probably be hard to sound less grateful than I did at times.

But it got me thinking about what an important role anger, or rather, letting our anger out in the right ways, plays in our own psychological well-being as parents of kids who have been through hard times.

The first time someone emailed me in anger over Sophie's story, I was caught by surprise. It had never occurred to me that our miraculous luck could be the cause of hurt for someone else, and yet it has been- not just one person, but several, now. Initially I struggled to comprehend it, but it didn't take me long to put myself in their shoes and understand why it's so difficult to hear someone like me talk about how well someone like Sophie is doing.

There are thousands on thousands of other families out there whose kids have been diagnosed with HIE, and their outcomes run the gamut from fantastic, to not so good. It's easy to read what I say about Sophie and how well she's doing, and interpret that as me saying she's fought harder or done better than other kids whose outcomes haven't been as good as hers.

But that is *never* what I'm saying. I would never, ever compare Sophie to another child, whether they were doing better than her or worse. When I celebrate her achievements, it's because she's amazing and she's a fighter and she's a total inspiration as an individual. The *exact* same thing is true of every single HIE child. There are so many inspiring stories out there and so many incredible kids and families- hearing every day how hard people work to help their children makes me want to be the best parent I can be. It stops me taking our luck for granted. And it makes me want to help others however I can, hence Hope for HIE.

But people need to vent. I get it, and I'm okay with it being directed my way. No matter how hard I try to make sure everyone knows that I'm not flaunting Sophie's story thoughtlessly, or to cause pain, it is genuinely going to cause pain to some regardless, and I'm sorry for that.

If our story has ever caused you hurt, you have the right to tell me about it, and I'll be here to listen. And if I've done something unintentionally insensitive or just plain wrong, I'll make sure to change it.

I understand the anger, and reading back through those posts on Sophie's assessments, I see it shining through in my own words. My anger has been vented at the system, and the testing that drives me crazy, but really, it's all about the fact that we have to do it at all. It's about not wanting to hear that she has any delays- not wanting her to have had this injury, no matter how well she's doing now. I hate HIE. Hate it. I've used this blog as a space to let my anger out, and it's been therapeutic for me. I've felt better. It's even helped me understand my frustrations a little more, and it's allowed me to concentrate on the most important thing- helping my daughter grow.

So, I'm going to be a little less hard on myself when I read back over those posts, and see them for what they are- a reminder of how stressful that time was, and how important it is to get your emotions out in order to work through them.

Official discharge: Speech therapy

2011-03-10T06:56:00.000-08:00

I mentioned a few months ago that Sophie was not going to need any further speech therapy after the results of her assessment showed her scoring between four and nine months ahead of expected development.

Well, today I finally got the official discharge letter from the outpatient clinic. So far, we've permanently and forever been struck off neonatology, the developmental paediatrician, and now speech therapy. Next month, we'll get our official letters saying goodbye to physiotherapy and occupational therapy, and then we'll be all on our own for the first time since Sophie was born- with the exception of her neurologist, who wants to see her annually until she's five or six, mostly to try to understand what went so right for her.

No question that speech therapy is about the last thing Miss Bossy needs right now. At two-and-a-quarter, she's expected to have a vocabulary of around 300 words, and be speaking in two and three word combinations. Not Sophie- we estimate at least 1000 words in her collection; she's also talking in almost full sentences of up to seven or eight words at a time, and can sing about eight different nursery rhymes from start to finish.

Looking justifiably pleased with herself

In fact, Sophie is meeting almost every one of the milestones expected of three-year-olds (the only one she's missing is being able to give her gender and age), and she's doing more than half of the language milestones expected of four-year-olds. She's even doing some of those not expected until five years of age, like being able to count to ten (eleven, actually, but who's counting?) (Do kids these days really not know how to count to ten before five??).

Working those speech muscles
(Everyone needs a mother like me, who'll post this stuff on the internet)

It's a bit startling to see her take off like this, but a very inspiring thing to see, considering she was first diagnosed with a language delay at 8 months of age. Whenever we see her doing this well at something, we think about what her first physiotherapist said- that for every milestone she seems to be easily meeting on time, she's working twice as hard for it as other kids. To be so far ahead means she's working harder than any of us can possibly understand. It makes me want to work harder at everything I do to match her example.

Some recent Sophie conversations:

Last night, she tried to steal a packet of defrosting crumpets off the kitchen counter, and daddy told her off. She came running in to me, wailing, and said, "Daddy said, "No, Sophie! Don't touch crumpets!"" Ever sympathetic, I asked what happened next, and she tearfully told me, "Daddy put Sophie on Thinking Spot for two minutes."

Erm- no, actually, he didn't- but wow, she came straight out with it like it was the gospel truth. I was impressed! The Thinking Spot is the highest level of punishment here, and she holds it in awe.

These days bedtime comes with a running commentary. Sophie instructs you on every stage before you get there, and if you ask her about going to bed, she'll relate the whole thing. "Mummy put bottle in the microwave. Put lid on. Sophie lie down, get new nappy. Put jammies on. Drink bottle, read Sharky book. Mummy cuddle you, mummy kiss you, mummy say, "love you, Sophie! Bye-bye, Sophie!" Sophie cuddle Sylvester, go sleepy."

I wonder if there's a record for the longest one-sided conversation ever held by a two-year-old?

There are so many, I could just keep going for ages, but I won't. I'll leave you with one last one- a couple of weeks ago, she came swanning out of my bedroom with mismatched high heels on her feet. I asked what she was doing, and she said, "Going shopping!" When I asked what she was going to buy, she flipped her hair back off her face (our favourite frequent Sophie gesture) and said, "Deodorant."

Ha! I don't know where that one came from, but it made me laugh and laugh.

My smart cookie, growing up so fast

Hope for HIE Foundation

2011-02-23T07:07:00.000-08:00

As mentioned a couple of posts back, a group of parents around the world have been working on the development of a foundation to educate, support, and raise awareness of hypoxic ischemic encephalopathy.

The details are still being developed, so I won't go into great depth here. You can read the latest update at the Facebook Newborn Brain Cooling page here instead.

In the meantime, we are developing a list of contacts who are interested in helping out with Hope for HIE. Helping out can mean anything from basic cheerleading for the project, to simply sharing your story or being a contact point for other families whose children are diagnosed with HIE, to more complex involvement in tasks like web design, financial management, medical support and legal aspects of the operation.

If you'd like to read a bit more about the specific tasks we're considering, and share with us your skills, experience, and interest in assisting, please click this link and check out the brief survey we've put together.

All answers remain confidential, and can be viewed only by the three project organisers. No expression of interest is a binding commitment- the major purpose is for us to know what human resources are out there as we plan for the future.

We look forward to sharing more details with you soon! Please go like our Hope for HIE Foundation Facebook page to keep up with all the developments as they happen.

Jumping bean

2011-02-06T06:19:00.001-08:00

Just took this photo this evening while Sophie was helping her dad water the garden, and doing big froggy jumps through the puddles :) She is SO full of energy, and so all over those gross motor skills in which she was once delayed. I swear, she can jump higher than me.

I'm trying to find time for a longer post soon, but there's not much news to report. Sophie's doing amazing things every single day, and talking like a grown-up. Today we went to drop something off at the house of a friend who has a younger baby. The whole way there, she was in the back of the car yammering away. "Sophie see little baby? Sophie cuddle baby? Baby cuddle Sophie?"

When we got there, doh! The friends had popped out, so we left their package on the doorstep and hopped back in the car to go visit the hardware store. Sophie couldn't let it go. "Where's baby? Sophie see baby? Baby not home?" In the end, I told her maybe the baby would be at the hardware store. Well, that worked. "Baby's going shopping! Baby's in Bunnings!"

Was there *one single baby* in the whole Bunnings store this evening? No, no there wasn't. But it was okay, because she got to wheel around a mini-person's trolley, which she loves.

On the way back, she consoled herself by running through her favourite song of the moment- Old MacDonald- with her own Sophie insertions. "Old MacDonald has a baby. Ee-i-ee-i-oh." (He also has a Sheba cat and a Daisy dog, just like us- how about that?). He also has some ice cream *and* an owie finger, both of which Sophie has had in the last day, strangely enough.

When we got home, she ran in the front door, straight to daddy, and said, "No baby in Bunnings."

I was totally told on by my two-year-old. This toddler makes me laugh day in and day out.

A new year

2010-12-30T18:20:00.000-08:00

We're entering Sophie's third year as 2010 becomes 2011, and now that most of the worry is behind us, I think this year is going to be a particularly great one.

Not only is Sophie becoming a really grown-up little girl, chatting constantly, being very self-sufficient and independent, but we have more time and energy to give to helping others.

High on the agenda is a project initiated by the parent group at the Facebook Newborn Brain Cooling page- the establishment of a foundation and a website for research, support and education surrounding Hypoxic Ischemic Encephalophathy. This blog is one of the first places people arrive when they receive their child's diagnosis and go looking for information on the Internet. Most of the other sources of information are either scary or jargon-filled scientific articles. We hope to establish a website that will fill the same role, just in a more official way- it will be hopeful, supportive and informative so that parents don't have to go digging for the answers they need, and it will provide connections to other families who've been through the same things.

More news on that in 2011 as it happens.

Another project I'm involved in next year is setting up a local branch of Australia's Miracle Babies Foundation. At the moment, there's no Perth group, but we now have a small core of interested parents who are keen to help get it off the ground here- if you're in Perth, have had a child in neonatal intensive care, and think you might be interested in helping out, let me know!

On top of all that, I'm going up to four days a week in my day job, and I've just completed the second draft of my novel. I hope to revise it to final draft stage by the end of March, ready to send out in the search for an agent and/ or publisher.

So, a busy year ahead, again- but as ever I'm very grateful that we have the opportunity and ability to help others wherever we can since we've been so lucky with Sophie. And above all else I'm grateful for everything she's achieved this year, and for all the new friends we've made, too.

Wishing you all the best for 2011- happy New Year!

Who's the boss?

2010-12-28T06:45:00.000-08:00

Not me, that's for sure.

[PS- this is another old post, from December 2010 when Sophie was just over 2]

Sophie's language skills have reached a point, at 2 years and one month, where there's now very little she can't ask or express in words, one way or another. We are pretty stunned by her level of language development and her understanding- she has skills that far exceed her age, which we already know officially- but it wouldn't surprise me if she was racing on even further at the moment.

A typical day begins with a typical Sophie conversation.

"Mummy! Mummy!"

I go in to get her up, and get bombarded with questions. "Daddy's sleeping?"

"No, daddy's at work."

"Oh. Daddy's working. Look, Sophie's pillow! Bunny! Sylvester! Sophie's cot!" Then she remembers a few more important things. "Where's Daisy? Sophie pat Daisy? Daisy kiss Sophie?"

Daisy the dog wanders in to squeals of delight, followed closely by Sheba the cat, known around these parts as "Beeba." Much patting, kissing and cuddling of both pets ensues. Then,

"Sophie wee-wee. Sophie new nappy."

Nappy change. Before this is halfway done, she's ordering breakfast. "Sophie wants porridge. Sophie wants honey porridge."

Throughout the day, I can't scratch my own nose without getting the order. I'm told to stand up, sit down, go this way, fetch various things, put on a favourite movie, even go to the toilet. What would I do without her?

"Mummy, pat Beeba. Mummy, turn off music. Mummy, put baby in cot."

She went out to see the Christmas lights with her dad last week, and came home hysterically excited about all she'd seen, including,

"Sophie's panda! Mummy, say, 'bye-bye Panda!'". I had to repeat her farewell to the animatronic panda she'd seen in someone's display- quite often lately we're even instructed on what to say at various points ("Mummy, say, "No, Daisy! Naughty Daisy! Stop barking! Bah! Bah!"")

One of her favourite games at the moment is to put me in bed and tell me "Go sleepy, Mummy! Close eyes!" She waits an appropriate period of time (perhaps half a second) then leans in and yells, "Wake up, mummy!".

Giving thanks

2010-12-25T05:17:00.000-08:00

Each year at Christmas, our thoughts turn to the people who'll be spending their holiday season in neonatal intensive care units around the world- the babies, the parents, and the staff who are taking care of them.

Sophie escaped from hospital on December 17th in 2008, 26 days after she was born, and for a while there it looked like we'd end up spending Christmas in hospital ourselves. I can't even tell you how relieved we were to avoid that, but not everyone gets so lucky. Sophie's little friend Matty spent that same Christmas in the same NICU as part of his total 202 days in hospital after being born at 25 weeks and 5 days (see here for our post about Matty and his family for Prematurity Awareness Month last year).

We decided last year that we wanted to do something for all the staff who give up precious time with their own families to take such good care of the babies in the NICU, and their families, too. So, we created a tradition we'll keep up for as long as we live in Perth- making a platter of baked goodies to take in on Christmas Eve so the staff have something to enjoy.

This year, I had a crazy crack at running a cake and cookie sort-of-sort-of-not business from home. In the end, I just didn't have the time to fit in that plus three days of work in my regular job, plus completing my novel, plus being Sophie's mum, so I gave it up. But I still love a good cookie challenge, and when I found The Mad Baker's Christmas ornament cookies earlier in the year, I knew I had to have a shot at them for my Princess Margaret Christmas Eve platter.

So, I made my own cookie cutters in the shape of a few different Christmas ornaments, went with a theme of purple and gold, and baked up a nice big batch of brown sugar cookies.

I think they turned out pretty well, and I hope the staff enjoyed them (and the homemade rocky road that also went on the platter).

Matty's mum Pam used to bake an awesome cake each time Matty reached another kilo in weight during his NICU time, and as a result of that inspiration, she started a cake business of her own. If you're in Perth and looking for a special occasion cake, I can personally recommend Cake O'Clock. Her cakes are amazing and completely delicious, and the lucky staff at Princess Margaret got a whole batch of those in addition to their cookies.

Taking the goodies into Princess Margaret was quite a moment for both Pam and I, and I was very glad to have her there with me. Last year, I dropped my platter at the front desk. This year, we were actually allowed into the NICU itself. I hadn't been in there since I walked out the door two years ago, Sophie being carried by the lovely nurse, Ron, who accompanied us back to Albany on the plane.

Very emotional to be back there at all, let alone to hear sounds that in 19 days became so familiar that I'll never forget them- the beeps of the monitors, the dinging alarms, the babies crying. Not to mention the disinfectant hospital smells that are always so evocative, and the sight of the various beds and rooms that Sophie moved through during her stay- first the main floor, with the sickest of the sick babies; then into a four-bed room when things were looking up, and she was first taking milk through a naso-gastric feeding tube; then finally the big nursery, where she stayed for ten days while we waited (and waited... and waited...) for her oxygen dependency to cease and her weight to go up.

It doesn't matter how much time passes; it doesn't matter how well your little one is doing- being back in the NICU takes you back and puts you right there again. I think it always will.

As Pam said yesterday, though, the strongest emotional urge walking through that door was to go straight to all the parents we saw sitting there beside their babies on Christmas Eve, and tell them that time eventually does begin to move again. One day, soon for some, not so soon for others, you do get to walk out those doors. Sure, at that stage the future might not be certain- but with each passing day the fog will clear a little, and one day you'll know what odds you and your little one are really fighting against. You'll be on the other side, moving forward.

Let me illustrate.

Two years on from that time in the NICU, Sophie had an awesome Christmas today- she had all four of her grandparents in the same house at the same time, which is quite unprecedented, since her Grandpa lives overseas. She laughed, chatted, cuddled, stuffed herself with ham lunch and sweets, and crashed for a three-hour nap in the middle of the festivities. She was the master of ceremonies, the opener of everyone's presents, and the stand-up comedy act to entertain everyone.

At 2 years and one month of age, she can now sing the whole alphabet, including the entire "now I know my ABCs" at the end. She talks in full sentences, stringing together six and seven words at a time, and can explain almost anything she needs with words. She caught a ball for the first time last week, and is now a dab hand at that. She can write one letter of the alphabet (that's "O"), and has a good shot at a second ("S" for Sophie). And her days are spent conjuring all kinds of adventures for her favourite teddy bears (and her mother)- her imagination knows no bounds, as illustrated by a recent visit to my office, where she promptly picked up the phone and proceeded to have a conversation with my mother and her dog ("Hello Gramma! Ooh, Gramma's making yummies! Stop barking, Bella!").

I mention these milestones in particular because they're in the list of what's expected at three years of age and above. She's going from strength to strength, getting further and further ahead in all developmental areas all the time. She's been discharged from paediatric follow-up this week, and we're now waiting only on our physiotherapy and occupational therapy discharges in March to be specialist-free.

So, Christmas is our time to be especially thankful for the hardworking people who made it possible for Sophie to be the little star she is today, and to appreciate the incredible luck that brought us to this point.

And with that, we wish you all a very happy holiday season, and look forward to what 2011 has in store.

Girls dressed up for the party.

Sophie discovers an Elmo present (the best kind, apparently).

Digging into a roll with lunch, not looking terribly impressed (don't worry, everyone else was).

Taking a break from all the pandemonium to read herself a book, very quietly and all on her own.

Doctor Sophie- who knows? One day she just might be. The world is her oyster.

One is the loneliest number

2010-11-18T02:29:00.001-08:00

Over the last two years, I've been in contact with fairly countless numbers people who are beginning their HIE journey as a family. Amongst the most common questions people ask is, when does it get better?

The pain, the anxiety, the guilt. The fallout from the moment their lives changed forever.

Because make no mistake, even if your child, like Sophie, escapes this injury without any long-term effects, as parents, as a family, you *are* changed forever. Anyone who's been there knows what I'm talking about.

I've been telling people for the last year that Sophie's first birthday was a cathartic point for us. A defining set of moments that put us through the wringer and back-

This time last year, I realised she'd stopped moving.
This time last year, I was in the operating theatre.
This time last year, Sophie was on the RFDS plane.
This day last year, we got the results of the MRI, telling us her brain damage was severe.

And after we went past all those milestones, things felt different somehow. As if it wasn't enough to live through them once; at the time, all was confusion and coping. A year later, given hindsight, introspection, investigation, hours of worrying and fussing, it almost had more impact. As if we could see our old selves falling unknowingly from happiness toward despair, and we couldn't do anything to stop it.

When they all passed, there was a sense of having dealt with it in a much more thorough way.

Yesterday was the second anniversary of Sophie's due date. This time last year, I was thinking about how this time the year before, all had still been well.

This year? Well... it's in the past. Really in the past. I forgot about it, completely.

On Sunday, when she turns two- everything that happened on that day last year was lovely. We had a party at the zoo. Our friends and family came and celebrated. We laughed and cried and ate cake. We talked to elephants and penguins.

This time last year, we were at a point in our journey where the road was no longer unclear. Perhaps not totally known, but not quite so terrifying, either.

The fear, the anger, the sadness- it's really gone. After one year, the pain wasn't as sharp. After two years, it doesn't exist.

I got Sophie's notice of impending discharge from the paediatric development program yesterday. It's almost over for us. Not everyone gets so lucky, but for us, two years has been the period of time we needed to really, truly heal.

And what that allows us to do is put our attention from now on toward helping others.

Circles and boxes

2010-11-11T22:45:00.000-08:00

We trundled off this morning for Sophie's latest developmental assessment, again without much clue of what we were supposed to be doing there.

Turns out it was the Bayley Scale of Development, which is a lot like the Griffiths Assessment we've done before. Essentially, it's about having your little person complete a series of tasks, which are then used to assess their level of development across the board, including their social-emotional age.

In practice, it's about closing your two-year-old in a small, windowless box of a room, asking them to sit still in a chair for almost two hours, and requesting that they complete a series of seemingly neverending unrelated tasks, in order, whether they're interested or not.

I value these assessments, but I just wish they could consider a better way to approach them. As soon as Sophie was closed inside this little room, she was at the door asking to leave. She was interested in the first few tasks- she did a puzzle in record time (the assessor said she'd never seen a kid do it so fast before), she did a few other little things, but I can hardly remember them, because in very short order she got sick and tired of being asked to sit still, and started to get stroppy.

Stroppy turned into angry, and angry turned into furious, and in not much time at all we had a Sophie face-down on the floor screeching her wee head off. At least they got to see the full tantrum.

We took a break by doing some gross motor tests, in which she did expectedly well- again, the assessor said she was the only child she'd seen who managed one particular test (jumping off the bottom step of a flight of stairs).

And then back to the cognitive stuff, and back to the tantrums.

In the end, she did really well on everything she completed- as we already know, her language skills are phenomenal- she's up to a five-word sentence now (saying, "Mummy put baby in cot" when we play with her doll), and can sing the whole first verse of "Open Shut Them", complete with hand actions. Her problem solving is great, her fine motor skills are brilliant, and her interpersonal skills are amazing.

Despite all that, she's not likely to do well in the assessment, because she just didn't complete enough of it. The assessor said she'd make a note that she believed Sophie was ahead in all areas, but that the results would likely show her as being behind, simply because she was too grumpy to finish.

Poor bunny is currently on antibiotics for a bacterial throat infection, and has barely slept this whole week, so the timing wasn't ideal.

We also had a visit, while there, from a developmental paediatrician. What an odd breed of people they are- the ones we've met, specifically. I'm yet to come across one who has any real affinity for kids. It's so strange. This guy was no different- very high level intellect- but in the end, after a very brief assessment, he announced that he'd seen all he needed to see, and that Sophie had "got away with it." (The brain injury, that is).

In addition to summing up the last two years of our lives in that abrupt manner, he also gave a hand-waving dismissal of the fact that people "get scared" when they're told that an MRI like Sophie's is a Very Bad Thing, and that it isn't always the case.

Well, excellent. So we can see, now. It's a pity that's not true for all who have to hear the bad news, and I'm rather hopeful his attitude isn't quite as dismissive with them.

The dark, fast shadow

2010-11-11T02:18:00.000-08:00

I wrote this a couple of months ago for the Band Back Together group site, which if you haven't found it yet is a great place to visit to find stories of others overcoming challenges in life.

I re-read it and felt quite proud, so I wanted to include it here, because it's part of Sophie's story.

#

There are some moments in life you know you’ll never forget.

We’ve just returned from a holiday at a beach where I used to stay with my family two decades ago, and as we walked back to our hotel room from a long walk on the sand, one of those moments came back to me.

It was a bright Australian summer day, and ten-year-old me was bobbing in the blue-green sea with a friend, enjoying the coolness of the water on my skin compared to the burning beach sand we’d left behind just a few metres away. There we were, weightless, being washed side to side by the rolling waves, not a care in our minds, when a dark, fast shadow swept through the water in front of us.

It might have been a trick of the light, or a lone cloud slipping briefly across the sun overhead. Or it might have been just what we thought it was, and we might have been lucky to swim back to shore that day.

Even without knowing whether that shadow was a big threat, a small threat, or nothing at all, the sight of it still sent a shot of terror through me that I’ve never forgotten. I’ll remember that moment- the smell of the sea, the way I had to squint my eyes against the brightness of the sun bouncing off the dunes, the feel of water wrapped thickly around my legs- as long as I live.

I can say the same for the moment the doctors told me that my daughter’s tiny newborn brain had been severely damaged, and that she would more than likely not walk or talk. Not only do I remember every detail of that moment- how cold my husband’s hand was, clutched in mine; the slow, loud tick of the clock on the wall; the brightness of the day outside the NICU window- but I felt the exact same flickering terror.

What happens next?

When my daughter was born in November 2008, my life became a series of those heart-stopping, soul-destroying moments of fear, one after the other. There’s so much I don’t remember about that time, but so much I’ll never forget.

I remember the moment I realised she’d stopped moving inside my stomach, four days overdue. I bent down to pick something up, and instead of the usual baby squirm, there was nothing but a weight like lead, and I knew something was wrong.

I remember the desperate fear of the moment they strapped the monitor to my belly in the hospital. The soaring relief when her little heartbeat appeared, strong at 140 beats per minute. And the crashing terror as we watched it plummet before our eyes to only 80 beats per minute.

I remember the swirling rush of people as they got me ready for the crash c-section. Buffeting around me, pulling off my clothes, thrusting forms into my hands. I remember shaking so hard as I sat on the operating table that I thought I must have looked like a bad actress trying to pull off intense shock. I remember being so clear, calm, rational in my thoughts, even as my body was reacting. I only had one thought. Get her out. Do it, now.

I remember waking up in a dark, silent room. My husband told me she was alive, but she was sick. Very, very sick. She’d become tangled in the umbilical cord before labour even started- it was wrapped six times around her legs- and by the time they got her out that heartbeat was down to zero. She was being airlifted to the children’s hospital for urgent treatment, and they still didn’t know if she’d make it or not. She couldn’t breathe without a ventilator. She was in a coma.

I remember the first time I saw her, through the window of the tiny nursery in our country hospital. The anesthesiologist, who’d been called out of bed for the midnight c-section, was still there at midday the next day, breathing for her. Putting his thumb on and off the end of an oxygen tube at just the right rate, because they didn’t have a ventilator small enough for her. He’d been doing it for ten hours. Breathe in. Breathe out. Ten hours.

I remember them wheeling her past me on her way to the Royal Flying Doctors plane. They brought my bed out into the hall, and I reached in through the hole in the incubator and got to touch her soft little knee for a few seconds before she was gone.

I remember the moment it all became too much, after I was flown to the city to be near her. She’d started having seizures. They were cooling her body to 34 degrees Celsius, using hypothermia to halt the swelling and bleeding that was progressively causing more and more damage to her fragile little brain. Because of the caesarian and the air transfer, the hospital I was staying in (not the same one she was in) decided I had to have anti-coagulant injections in my stomach for three days. They hurt like an absolute bastard. On the second day, I asked the brusque nurse if she could put the injection in my arm instead. She said no. I talked to my best friend, who’s a nurse. She said they should be able to do it somewhere else. The next day I asked if she could put it in my thigh, maybe. My butt. Anywhere but my stomach. She said no. That was it. I went into total meltdown. Bawled my eyes out, shook and cried, let the panic, fear and anxiety flood into me and drown me senseless. Hit rock bottom, and was finally able to start the long swim up toward the surface again.

I remember the next night, when I got to hold her for the first time, and I started to think it was going to be all right, after all. She was still in a coma, still attached to so many wires and tubes- in her hands, feet, belly button- that my husband described her as more like a VCR than a person, but she was alive. She was doing well. There were no more seizures. When I passed her over to my husband for his first cuddle, she opened her tiny, swollen eyelids just a crack and squinted up at him with a look that said she was in there, and she wasn’t giving up.

It got better and better from there. She came off the cooling mat. Off one medication after another. Off oxygen. She started to suck on a bottle, and she had her feeding tube removed. She had a few successful attempts at breastfeeding. She had more and more awake time, and she inspected us all. She pooped herself regularly, with gusto. She howled her little head off when she was hungry, to the point where they nicknamed her “zero to one hundred Sophie,” for her capacity to go from sound asleep to mega-tantrum in under one second. After a week in the hospital, we started to hear that they were planning to send us home. Sweet, sweet relief.

It looked like that shadow was just a cloud passing across the sun after all. A moment of unforgettable terror, but after that, a sunny day at the beach.

Not so. Like so many of life’s shocks, the biggest one was left until we’d been lulled back into a false sense of security.

When the doctor told us the MRI scan of her brain was back, we expected him to tell us it was all clear, because that’s how it looked when we observed her. The very last thing we expected was to be sitting in that stark white office, watching the rest of the world get on with life outside the window, while he told us that there was significant damage to most areas of her brain. He showed us picture after picture. Scatters of white bleeding against the grey folds of the brain in every area that mattered. The frontal lobe, which controls emotion, reasoning, problem solving, personality. The occipital and parietal lobes, responsible for vision. Movement.

He told us it was one of the worst scans he’d seen on a child who survived an initial injury like hers- hypoxic ischemic encephalopathy is what it’s called, meaning damage to the brain caused by lack of oxygen. That on a scale of one to ten, hers would rate a seven.

That this much awaited, much loved first child in the next generation of our family may never walk or talk or even know who we were.

Forty weeks and four days of perfect, trouble-free pregnancy. An ultrasound two days- two days- before the birth, which showed a healthy, happy baby.

And at the last possible moment, a cord accident. Unavoidable, undetectable, irreversible.

We were lucky to have her at all. It was some supernatural mother instinct that made me realise her lack of movement needed attention so promptly. A lot of luck at all stages. We didn’t feel all that lucky. We felt like we’d been torn to pieces and scattered to the four winds. We fell apart.

The fast, dark shadow had turned out to be exactly the great white shark we’d feared, and now we had to face it, front-on.

We pulled ourselves together quickly after that. Because we were lucky to have her, and she still wasn’t giving up. She wasn’t listening to these diagnoses and prognoses. No, she was sucking her way to weight gain, re-routing neural pathways as she slept, and showing that she really is her mother’s daughter with her mulish stubbornness in refusing to give up her supplemental oxygen.

If she wasn’t giving up, we weren’t giving up on her.

Months went past. She grew and thrived. We researched, sought therapies, joined support groups, blogged. She had weakness in her left side, and tightness in her right. She had gross motor delays, communication delays. She never had any problems whatsoever in her personal-social development, being an unusually on-the-ball little person from the day she woke up. We went through assessment after assessment. Moved back to the city from the country to be closer to family and medical resources. If an issue came up, we found a way to deal with it. We researched ways to stimulate her in areas that weren’t problems- with the aid of her Bumbo seat, she was sitting independently at 6 months. Turning pages of a book around the same time, a year early. She crawled at 8 months, and her low/ tight muscle tone disappeared. Walked at 11 months. Said her first word at 12 months, and never looked back from there.

At 22 months of age, she’s now ahead in every developmental area. 2 months ahead in gross and fine motor, 4 months ahead in expressive language, 9 months ahead in receptive language, 6 months ahead in problem solving, and at least a year ahead in personal-social skills. Not one of the original predictions was even close to correct.

We took her back to the neurologist last month for an assessment that ended up lasting just ten minutes. As Sophie snatched her reflex hammer, then her pen, then stood one one foot, then giggled at a joke, the doctor threw her hands in the air and said she didn’t even need to complete the assessment to see what was right in front of her.

“She’s perfect, isn’t she?”

She is. And we are lucky, lucky, lucky. So many others with the same diagnosis don’t get this lucky. We will never, ever take that for granted, because we will always have those moments of terror trapped somewhere inside. The smell of antiseptic hand cream, a too-bright day, a visit to any of the three hospitals we stayed in- any of those things can trigger those memories, and we’re right back there in that moment, hearing the tick of a too-loud clock.

But there’s a difference, now- now that we’re holding hands with a little person who sings, “morning tea, morning tea” as she skips along beside us, because that’s the last pair of words we explained to her that morning. Now that we have a little girl who sees our happy tears and offers a “duddle” to make us feel better.

Now, those memories don’t hurt the same way. They’re just shadows in the water, passing by, and we’re no longer wondering. We know they’re harmless; we know they’re simply clouds across the sun on an otherwise sunny day.

It took long months to get here, and long experience to learn that the advice I hated getting from all and sundry during our time in the NICU was actually true: this too shall pass, and what doesn’t kill you will eventually, finally, after much heartache and pain, make you stronger. In the meantime, you have to weather the hard times as best you can. Feel the fear. Know that it won’t ever leave you completely- but in time, perhaps months, perhaps years, it won’t mean the same thing.

Talk about it. Keep a diary, a journal, a blog. Reach out to others who understand. I’ve had almost twenty emails from people who’ve read Sophie’s blog and need someone to talk to about what’s happening to them and their child. I’ve replied to all of them, and I’ve kept in touch with more than half. There are good outcomes, bad outcomes, and many in the middle, but we all have something in common- we understand what it’s like to see that shadow swim past, and we’ve all felt the fear.

Trust yourself. Trust your child. Work hard, and don’t give up. And one day, perhaps when you least expect it, the dark, fast shadow will be gone, and with it the fear.

ASQ, we've missed you!

2010-11-04T00:17:00.000-07:00

[I'm going back through my draft folder and posting a whole lot of things I've written in the last year but never posted, so expect to see some old news. This one was from November 2010, when Sophie was two.]

No we haven't, really. It's been a whole year since we were last required to fill in an Ages and Stages Questionnaire for Sophie, and you know how much I love the things.

Nonetheless, you also know what I'm going to say about this one- Sophie's scoring either 5/6 or 6/6 in every section, so she's doing just fine.

This year's survey came with a few extra surveys which are fascinating; a couple on behaviour, another on illnesses throughout the year; and another on language skills, asking us to tick every word she could say on a very long list.

Well, gosh. She can say more than she can't. But I'll tell you some of the ones she can't say:

Chewing gum
Lollies
Hot dog
Shut up (shut up?? Really??)

And a variety of others along the same lines. I suppose the suggestion is that my kid could know all these words without actually eating hot dogs and lollies and chewing gum, and in fact after I first scoffed at the survey, I was standing in line at the supermarket the next day and Sophie asked me what to call chewing gum. Typical!

Miracle Month

2010-11-04T00:12:00.000-07:00

Turns out November was a good month for Sophie to be born, because in Australia it's national Miracle Month.

Miracle Month is run by the Miracle Babies Foundation, for whom I'm pleased to say I've just become an official volunteer as they look to extend their services into Western Australia. The aim is to raise awareness of the challenges facing premature and sick newborns, and the website has plenty of details of events and ways to get involved.

Unfortunately Sophie and I weren't available to assist Princess Margaret with Thank U NICU Day on November 2nd, in which morning tea was provided for staff and parents at neonatal intensive care units around the country- but we'll certainly be there next year.

In the meantime, I hope this blog is doing our part to help raise awareness for people around the world. More people contact me every day to share their HIE stories, and I love to hear from people who are reading the blog, so please, don't hesitate to leave a comment or send me an email if you need a kind word or any advice.

More Sophie photos

2010-09-24T06:51:00.000-07:00

I've been without a camera since June, unfortunately, because I was scatterbrained enough to leave the charger cable for my camera in Sydney. But I've just got a new camera this week to tide me over while I wait for the cable to be returned, which means I can now take hundreds of Sophie photos every month, just like before!

At the moment the most amazing stuff Sophie is doing revolves around language. She's now putting together two word combinations all the time- Mummy's shoes, white van, Sophie's house, come Daisy!, etc etc etc. It's incredible to watch the speed with which it's all coming together. Just today she's gone from repeating any three words you say to repeating whole sentences. Sure, not much of it comes out right, but she's having a good shot at it anyway.

Here's a contemplative Sophie watching the recent bulk rubbish collection- lots of interesting big trucks right outside her window. She loves trucks, and is inclined to yell, "BIG TRUCK!" the minute she sees one these days.

Next, some pictures from a recent family holiday to Ledge Point.

Here's Sophie settling into holiday mode with a bowl of one of her favourite fruits- strawberries. She ate almost a whole punnet in one sitting.

Here madame tackles the biggest slide yet, without so much as an ounce of fear. She'll climb up there all by herself and hurl herself down slides of any description. This one ended a moment after the photo was taken with her landing flat on her back at full speed- but she picked herself up without a word of complaint, and went straight back for more.

Walking to the beach- walking is one of Sophie's favourite things these days. One of our approaches to making sure she's up to scratch on her gross motor skills has been to get her walking every day of the week (and it's good for us, too!). We walk home from daycare every day she's there, and walk to the park on other days.

Sophie plays "find the hand" on the beach and is suitably amused.

Mum showing Sophie how to roll down a grass hill- ah, the joys of childhood! :)

We recently celebrated a wedding in the family, which was a good excuse for Sophie to get dressed to the nines. Here she is checking out the amazing view from the registry office:

Sharing a (very good) joke with daddy:

Her version of "behaving herself" while visiting family after the ceremony- she wandered off, and this is where I found her, like a little cat burglar:

Sophie and mum celebrate the first sunny spring day of the year with breakfast in the garden.

With her fellow troublemaker Daisy dog. Please note the sparkly shoes she's wearing over her pyjamas- they were the shoes she wore to the aforementioned wedding, and she wants to wear them every day now. She toddles out in the morning and yells, "Sparky shoes!". Who can resist that?

The cheeky little monster looking thoroughly cheeky in the first photo, then practicing her jumping- on the couch- in the second. Tough when mum and dad tell you to jump to build up your leg strength, then won't let you do it on fun stuff.

Tying up loose ends

2010-09-24T06:29:00.000-07:00

As mentioned a couple of posts ago, we saw Sophie's physiotherapist and occupational therapist at our not-so-beloved outpatient clinic a couple of weeks ago. I've been waiting for the official report to arrive before writing this post, but it's taking so long that I figure I'll write now and update later.

Long-term readers may remember me venting back in February and again in June about Sophie's physiotherapy assessments. At first, I was just frustrated that we had to keep having assessments at all, particularly when we kept getting the same results- mostly okay, but maybe not, but probably, but not enough for action, just enough to keep worrying... Argh! Later, I started to get frustrated that the assessments weren't totally accurate.

This time, we knew Sophie was doing very well. We've never had concerns about fine motor skills, but since it took us over a year on the waiting list to see the occupational therapist, we thought we might as well do it.

As expected, she kicked butt from the minute she walked into the room. She even did a few things we didn't know she could do. She ran, jumped, climbed, walked along a balance beam, carried and threw a ball that was bigger than her, rode a little tricycle, and just generally showed perfect muscle development, coordination and balance. The eventual assessment will show her as being ahead of expected development in gross motor skills- she's doing a whole raft of things not expected of under-twos, so she's at least two months up.

And as expected, she also blitzed the fine motor skills assessment. She threaded beads onto a string, then when asked to put it away, carefully pulled each individual bead off and put it separately in the bag. She put together a few jigsaw puzzles she'd never seen before. She drew a lovely picture of mummy (I'm just a blob at this stage, but she informs me that it's mummy on the page). She did everything expected of her, and everything expected of a two-year-old, so she's again at least two months ahead in fine motor skills.

All a very great relief. She's going to stay on the books for another six months, but if we want to see them again, we'll need to request the appointment. If they don't hear from us within six months, she'll be discharged. It's looking like March next year will see her officially discharged from most if not all therapies- but she's already finished with them, unless something very unexpected comes up.

In fact, this means she's got no therapies left whatsoever. All finished.

The only lingering question we have is about sensory processing disorder. Sophie shows some of the signs that accompany this- she gets very upset very quickly about having sand or dirt on her hands; she's a very fussy eater; she gets obsessed if she can feel a tag in her clothing against her skin; and she hates, hates, hates to have her nails clipped.

All normal toddler stuff, too- it's just a question of whether the scale of the reaction is appropriate, or if it's a little over the top. Our instinct says it's normal- she's got a big personality, and she likes to be theatrical. But we will keep an eye on it in case it does start to look like a bigger issue, and if it does we'll need to start some exercises to desensitise her a little to outside stimulus.

Personality check

2010-09-24T06:19:00.000-07:00

Having just listed off the seven specialists we've seen in the last year, and knowing that we're coming to the end of that road, I was rather surprised to discover last week that the hospital has scurried up and eighth (and hopefully final!) specialist for us to see in November.

This time, it's a clinical psychologist, who will do a 2-3 hour assessment of Sophie's social and emotional development.

It threw me for a loop when I got the phone call- they're going to do *what* exactly, for up to three hours, to figure out what's going on inside Sophie's crazy little head? I'll be very interested to see. I expect they'll be assessing how she interacts with me, with strangers, and with toys, and I expect that they'll be flummoxed to see how mature she is.

I'm also wondering if they'll get a Sophie Special terrible two tantrum. All almost-two-year-olds blow a fuse now and again, right? I already know the answer to that question. Of course they do. It just has me wondering now whether her explosions will be judged normal or not.

And again, I already know the answer to that question- of course they are. Previous assessments we've done ask the questions that demonstrate whether there's a problem developing in that area- for example, does your child cry inconsolably for a period of more than half an hour when something upsets them? Most kids get over the screaming bit within a couple of minutes. It feels like an eternity when Sophie is howling over some minor slight (like tonight, for example, when she took two pieces of garlic bread with her dinner, and her dad had the temerity to take one off her). But really, it's what you've got to expect from a little person who is seriously frustrated with an inability to communicate her needs perfectly.

It's going to be one of the most interesting assessments of the lot, I think. And it's also going to be the biggest reflection yet on our parenting. I think we'll all do pretty well.

Counting down

2010-09-05T07:39:00.000-07:00

When I look at the list of specialists and therapies we were involved in at this time last year, it seems unbelievable. We were on the books for:

Early Intervention clinic
Developmental paediatrician
Neonatologist
Speech therapist
Neurologist
Occupational therapist
Physiotherapist

Phew! Of those, we've been discharged now from the Early Intervention clinic and the speech therapist, and we only have a cursory follow-up left with the developmental paediatrician. The physiotherapist and occupational therapist we'll be seeing this Thursday, and I expect that we won't need to go back to at least one of those (the OT). I'd like to think that perhaps we'll be discharged from both. We'll see.

That leaves us with the neonatologist and the neurologist. We had our six-monthly review with the neurologist last week, and it went very well (as would be expected).

In fact, we were in and out in under five minutes. Sophie wandered into the room being her usual cheerful self, went straight to the bucket of toys, and immediately proceeded to pull out all the most difficult things she could find, and figured them out instantly. Then told me about them. She had a couple of real shining moments- the neurologist asked me if she could balance on one foot yet (another of those odd questions you never expect).

Well, I didn't know. So I turned around and asked, "Sophie, can you stand on one foot?"

To which she lifted one foot off the ground immediately, and with a big grin on her face did just that. I think the neurologist was even more amazed that she understood the question so perfectly than she was with the impressive physical skill.

Sophie was so busy playing that she didn't want to get her reflexes tested, or her joints, and after trying out one knee, the doctor just gave up, looked at me, and said, "She's perfect, isn't she?"

It so happens she is.

They'll see us again when she's three years old, but in the neurologist's words, that's "for our sake rather than hers", because it's not often they get to observe a kid with Sophie's beginning growing up without a single problem. We'll see the neonatologist when she's two, and we'll be discharged from them at that point.

So, we're edging closer and closer to being specialist-free- fingers crossed that on Thursday, all our recent hard work will pay off and the physio will feel that Sophie's identified 2-month gross motor delay is out the window. Two weeks ago I wasn't sure it was- but today, I think it is. She's just in the last month become very intrepid indeed with climbing stairs and play equipment, running, jumping (both feet off the ground if she's holding onto something!) and walking along a balance beam. Looking good so far.

Here she is testing out that ankle strength on a bouncy castle- she loved this to bits (also, I'm all class, taking my kid out to play in her pyjamas- but hey, it was cold!):

Wake up times

2010-08-17T06:04:00.000-07:00

One of the most common things that brings people to this blog is the sleep question.

As you've read in previous posts, Sophie's sleep problems were finally sorted at 14 months of age, and today at 21 months of age she's still sleeping fantastically well, generally from around 8pm to around 8am every night, plus a 2-3 hour nap in the middle of each day.

But there are still rare times when she's either very tough to get to sleep, or wakes up during the night, and because they're few and far between, we've been able to observe exactly what's making her wake up at different times. It's curious, but the time has everything to do with the cause.

So, Sophie goes to bed (generally) between 8 and 9pm. Once a month or so, she'll have a couple of nights where she wakes up at one of these times:

11pm: A cold or tummy bug or another illness. Usually the only thing that can wake her up at this time is a good coughing fit, or the kind of sore tummy that isn't helped by painkillers. This wake-up often happens if she's coming down with something that we don't yet know about.

1am: Teething or any other kind of pain- the Panadol starts wearing off at this point if she's taken it just before bedtime, and she wakes up either with pain or fever.

3am: Nappy issues (poop or very wet); also if she's hungry (because she didn't eat enough dinner, usually). We suspect there's also a bit of a nightmare component coming into this wakeup, though she can't really tell us- just once in a while she wakes up yelling her head off for no apparent reason. It's at this time of the night that she's also most likely to wake up by getting arms or legs caught in the cot bars.

5am: Too cold. She still refuses to sleep under blankets, which means we have to have an oil column heater in her room through winter, plus warm her bed with an electric blanket. But on very cold nights, and if she's not wearing enough layers, this is the time she wakes up. It took me a while to figure out that cold was the reason, but I realised because it's the time *I* wake up when I get cold at night.

So, there you go- those are the major reasons we've observed, and many of them are tied into specific issues.

We find that 11pm wake ups are easy to settle; 1am and 3am wakeups not so much- they usually end with her in our bed; though by the same token they're also the times where she most often puts herself to sleep without any intervention. 5am wake ups are easier, but by that stage neither of us can be bothered taking the time to put her back to sleep, so we're far more likely to bring her in for cuddles instead.

Football!

2010-08-10T19:57:00.001-07:00

Sophie has many loves in her life at the moment. She's obsessed with cars, trains and buses. She'd spend all day, every day attached to the cat if she could. She loves kiwi fruit beyond all reason. And the very thought of getting to see all her friends at daycare has her in a total lather every morning she attends, yelling "Daycare! Katie! Eddie! DAYCARE!" as we get in the car.

But of all the things she loves, there's one that tops the list- her beloved Fremantle Dockers, and Australian Rules football.

As you've seen here, Sophie was first introduced to the Dockers very early, at just four months of age.

She went to her first AFL match when she was only 6 months old, and at that point it was all a bit loud for her. But what a trooper! We got belted by Geelong that day, and noise notwithstanding, she still had a great time.

But this year, things are different. This year, Sophie loves nothing more than going to the footy and cheering on her team, adding as much noise as she can herself. Here she is versus Geelong *this* year- that's more like it, boys!

The scary thing is, at 20 months of age she now knows everything associated with football- everything.

If she sees something purple? She'll yell, "Dockies!"
If she sees an anchor, on anything? "Dockies!"
Commentators talking on the radio or the TV? "Football!"
Drive past a sporting ground, any sporting ground? "Football! Dockies!"

She knows how to do the two most common crowd chants at the footy, and joins in every time ("Freeeee-o!" and "Doc-kers! (clap clap clap)"). She yells at players to "Kick! Kick!". When someone gets a goal, she'll yell, "Yay!" and clap. If someone falls over, it's "Uh oh!". If they get tackled, it's "Owie!". It's the only time we ever see her sit still with undivided toddler attention for several hours in a row.

Her love of football has been one of the things that has helped her get so far ahead in her development. It's had an impact on almost every area- communication (as above), personal-social (she works the crowd like you wouldn't believe every fortnight), gross motor (she loves to kick and run), and... well, problem solving, I suppose, is something every Dockers supporter has had to manage in recent years... Sophie, however, handles the bumps much more cheerfully than most of the rest of us.

We even went to watch a couple of different teams play while we were in Sydney in June, and she was just as much into it there. Here she is watching someone get tackled:

And here she is celebrating with the home crowd after Sydney won over Essendon (our Dockers shout-out to the great Leo Barry leap of 2005):

But her heart certainly beats purple, through and through, and I think the Dockers have a pretty rabid lifelong fan on their hands. She's been a member since she was 12 months old, after all, and now she's even blowing kisses to the mascot.

[UPDATE: Read about Sophie's close encounter with a favourite Docker here]

Speaking of assessments

2010-07-23T00:08:00.000-07:00

I seem to find less and less time to update this blog lately, but that's a good thing- it's because we have less and less things to worry about as time goes by, and we're just enjoying the crazy busyness that is toddler Sophie.

But we did have another assessment a few weeks back which has taken me a while to get to here- her speech therapy assessment at the outpatient clinic.

After the results of the Griffiths test, we were pretty confident that her speech wasn't a problem. But we've been on a waiting list for speech therapy assessment for a year, so when the appointment came up we didn't want to turn it down.

Before we went along to it, I decided I should sit down and make an official list of all the words she can say. At the Griffiths assessment, I estimated she had a vocabulary of around 40 words, which was pretty good. But when I actually started setting all her words down on paper, I was in for quite a surprise.

Turns out I've been underestimating the heck out of my little chatterbox, and her final tally was closer to 120 words.

Phew! Well, as soon as I found that out, I knew the assessment was going to go really really well, and I wasn't wrong. During the assessment, the therapist was impressed not only with Sophie's receptive and expressive speech skills, but also with her social personal skills (again). Her range of understanding of language is phenomenal- so much so that she's doing certain things only expected of three-year-olds. That's right, kids 18 months older than her. Double her age. Wow.

The official assessment came back scoring her language skills at 4 to 9 months ahead of expected development.

Which- wow. Really, wow. Considering that communication was considered an early delay for her at 8 months of age, it's just mind-blowing to see how far she's come in a year.

And I also think it's a testament to the effort we've put into that particular area as parents. Paul and I are both avid, life-long book lovers. Between the two of us, we have 11 years experience working in bookstores while studying. We both have university qualifications and jobs that revolve around words. And I'm an author, to boot.

So, words and communication have been very important to us from the beginning. From the day Sophie was released from the hospital, we've read several books a day to her. We talk to her constantly. We've put so much focus into communication and making learning fun, and it's all paid off.

It doesn't hurt that she's obviously smart as a whip, or that genetics are firmly on her side when it comes to words. But of all the things we feared when her initial brain injury was diagnosed, I think communication would have been quite high on the list.

In the couple of months since this assessment, she's been adding more and more words at a cracking pace, and she just yammers away all day, naming everything she sees. We went to the beach a few nights ago, and I don't think she stopped yelling "Ba! Ba! Ba!" for a single minute we were there (she got so excited that she scrunched "beach" and "water" into one word :)).

She's still not that keen on putting two words together- though according to the therapist that's not expected until 2.5 years of age. Last night, though, she put three words together for the first time, and the sound of them coming out of her mouth just reminded me so much of all the things we were afraid we'd never hear, and how brilliant it is that she can say them now:

"Love you, daddy."

:)

Griffiths Developmental Assessment 18 months

2010-06-16T04:11:00.000-07:00

As some of you already know, Sophie and I went to the developmental paediatrician for her 18 month assessment a couple of weeks ago.

No matter how well she's doing, I don't like these assessments. They make me question everything, and I always come out of the sessions feeling not like we've achieved a lot, but like we've got a lot left to conquer. I hate that feeling. The worst of it is, it's a false feeling. We always get the same result, which is that Sophie is up to date in her development.

So, this session we had yet another new doctor who'd never seen Sophie before. This wasn't at PMH, by the way, where we always have great experiences, but at the external child development centre, where so far we've only had bad experiences.

The Griffiths developmental scales, which Sophie also had at 7 months, take about 2 hours to perform, and involve getting the child to undertake a variety of tasks to test skills in the five main areas of development- gross motor, fine motor, personal-social, communication, and problem solving. There's also an overall developmental score given at the end.

Our session was immensely frustrating. We arrived in a brand new place stuffed full of toys and pictures and interesting things, and then I was supposed to get Sophie to sit still in one place and focus on what the doctor wanted her to look at.

Not this girl. She is busy, busy, busy all the time, and if there's stuff to look at, then she'll be off looking at it.

It was very hard to get her to concentrate on things like drawing on paper, and (as she often is around new people) she was also quite reluctant to use her many, many words. The doctor, who was busy filling in paperwork all the time, also missed a lot. Sophie went to the door, opened it, and proudly said, "Door open!". I pointed out that she'd just done this, and the doctor looked up and asked if I could get her to do it again, because she missed it. Could I? Of course not. Sophie was off doing the next interesting thing.

The doctor also missed her saying a tonne of other things, like asking for her nanee (banana), and so on and so forth. She was also unimpressed that Sophie uses animal "sounds" as words for a lot of animals- even though she can identify upward of 20 different animals like this, including distinguishing between a horse and a donkey. At the end of the session, she said she hadn't heard Sophie use anywhere near as many words as I said she did, and it was said almost as an accusation, as if I was building it up to make her look better. What good would that do me?

I had lots and lots of frustrations on that day, and I was waiting for the official assessment to come back. We just got it today. The results were:

Sophie, at age 18 months, was equivalent to the following ages in the following areas of development:

Overall: 19 and 3/4 months (1.75 months ahead)

Locomotor (gross motor): 16 months (2 months delayed- more on this in a moment!)
Personal-social: 22 months (4 months ahead, no surprise)
Speech language (communication): 20.5 months (2.5 months ahead- a relief)
Eye-hand coordination (fine motor): 20 months (2 months ahead, also no surprise)
Performance (problem solving): 19.75 months (1.75 months ahead)

So, ahead in every area, as we expected- in fact, she's SLAYING her development. She's so far ahead it's not even funny.

EXCEPT for the big surprise- behind in her gross motor development, allegedly. I very strongly DO NOT agree with this assessment, and I was both surprised and extremely annoyed by the doctor's explanatory comment in the letter:

"In the locomotor area, her abilities may have been underestimated. I did not observe Sophie trying to walk backwards. She did not demonstrate this skill at her physio assessment in February and therefore, I have not given her credit for this item."

Wait, WHAT?? This old crap again? You may remember back in February that I was disconcerted when the physiotherapist asked me if she could walk backwards. I didn't say no, I said we'd never really tried that, nor had we been watching for it. It caught us out a little, unusually. On that day, she didn't walk backwards. Worried about it, when we took her home, we watched her like a hawk. Within an hour or two, we'd seen her walk backwards. Within a week, we could ask her to walk backwards for us, and she'd cross a whole room like that. These days, she's a professional backwards walker. She does it just to amuse herself- walks across the room until she bumps into something, then giggles.

And given that this was something allegedly missing from her repertoire in February, and given that it was a specific skill worth a developmental score on this assessment, do you think the doctor asked me about it at all?

No, she didn't. Not one freaking word. She watched Sophie, paying half-attention at times, and didn't see her do it, so she assumed she couldn't. She can. And for that reason, amongst others, I'm confident that her gross motor skills are well up to scratch.

What makes me angry is that the letter informs me now that my child has been diagnosed with an ongoing developmental and gross motor delay. She doesn't have that! She's freaking well fine! She's way above level in every area, including overall, unless you count the section that wasn't completed correctly due to laziness/ inattention/ lack of care/ I don't know what.

And sure, it might not mean much to her in the scheme of things- hey, we're already enrolled in monitoring programs, so maybe in three months time they'll reassess and find she's fine. But for me, it's just one more thing that keeps dragging us back to therapy over and over again, squashing all the positives, keeping us fearful and worried, and not letting any of us get on with our lives.

And I'm over it. After the assessment, I called Princess Margaret Hospital's Early Intervention people, and talked to our speech therapist there. I explained my concerns and told her what I was thinking: I think I want Sophie discharged from the program, now. I think it's clear that any delays she might develop from here are going to be minor. I think it's clear that we've done very well spotting any issues as they arise, and dealing with those. We have private health cover, and we can access therapy that doesn't have a waiting list of more than 12 months if we find we need it in future. And I think that we have enough confidence in our understanding of Sophie and her situation to say, hey- let's give ourselves a break here. Let's accept that we do know best. Let's stop putting so much pressure on her and us, and let's just live our lives.

She's up to date or above in every area. If she does have a delay in her gross motor skills, it's less than the assessment demonstrated, because the assessment was not complete. And for the sake of all of our happiness, I think it's time we gave ourselves all the credit to say we've done it. We've overcome her tough start, and she's fine. And it's time to move on.

So, we'll see what happens. We have a speech therapy assessment at the outpatient centre next month- here's hoping for one good experience, at least!- and then I'll be talking with the coordinators about a discharge.

All the news that's fit to print

2010-05-15T06:21:00.001-07:00

Here's a little photo essay on Sophie's last couple of months of activities. She's growing up so fast, I can hardly believe it.

Her hair has grown so much she now needs to have it pinned back or tied up in order to see:

She's talking more and more (her current favourite words are "uh oh!" if anything gets dropped/ knocked over/ even if nothing happens, and "STUCK!" (said in that exact tone of voice) when she can't wrench something free (like her foot out of her pyjamas earlier today). She says several two-word combinations, like "up, please!", "love you!", "door open" and the like.

Physically she's into everything, climbing, running, and starting to figure out jumping. She loves to dance. She's a tiny little bit clumsy and prone to running into things, but at this stage I think it's probably ordinary toddler un-coordination. Mostly, at least.

Working on going up and down slopes, which was a problem in her last physio assessment:

The combination climbing, jumping and cat attack event:

Dancing with her singing dog toy:

Then attempting to take the dog apart, just like she saw me doing to put new batteries in earlier:

Socially, she's just amazing. She now likes me to kiss her owies if she bumps herself, and she'll kiss mine (if we accidentally smack heads, for example). She carries her toys around and mothers them to death, feeding them and giving them water and milk. She sets them up to play games with them- tonight she had three teddies on a big cushion in the lounge, and she would go to the other side of the room and take a big run-up, then throw herself onto the pillow with them and pretend to tickle them all. And she loves, loves, loves her dog and her cat beyond all reason- I think both of them would like to find new homes at this point in time, with all the unwanted bear hugs they get.

Conversing with mum's forensic archaeology teaching skull, who Paul has now named Mr. Skellybones:

Meeting a sheep- a little bit scarier than she expected from her storybooks:

Playing peekaboo- still her favourite game:

Walking the dog in the backyard:

Dog sandwich:

She's getting very assertive (to the point of bad behaviour), refusing to share toys with other kids and pushing them over and yelling, "NO!" when they do things she doesn't like. Sigh. Time to figure out this parenting gig for real. She's also starting to announce "poo-poo!" before she goes- which has prompted us to buy a potty for her (which we presently have no idea how to start her on). She's been super uber fussy with eating recently, but is getting better now that we've eliminated sulfites from her diet (that's a story for another blog post).

Deciding whether she's had enough scraps of cheese and sultanas to constitute lunch:

On a sugar high at a first birthday party:

Eating one of mum's dinosaur cookies- if only everything went down this easy!:

She's not sleeping great at the moment- she has her two top canine teeth just breaking through the gums, and as with every previous tooth they're really bothering her. But I know she'll get back to her best, because in between the 2am wake-ups she's still having nights where she sleeps the full 12 hours.

At the beach back in her birthplace of Albany:

And at a different beach, not deterred by much colder weather and water as she runs full bore toward the waves to throw herself in:

Watching her dad's beloved Fremantle Dockers beat the reigning Australian Rules football premiers Geelong:

The match was exciting for almost everyone in the crowd, bar one, who had to go home at halftime due to unforseen concentration issues:

Various shenanigans- fascinated by a lion fish at the Aquarium:

Attack of the car-washing foam monster:

Riding high on dad's shoulders at the Red Bull Air Race 2010:

Roaring at her dinosaur after visiting the dinosaur exhibit at the WA Museum:

The end of an era

2010-05-01T20:46:00.000-07:00

After months and months of talking it up, we've finally managed to do it- we've weaned Sophie off her beloved breastfeeding.

Before she was born, we joked that when they're old enough to ask for boobs, they're too old to still be feeding. I don't deride anyone else's choices; that's just our opinion. I didn't mind when we got to the point that Sophie did come up with her own word, but after a while being asked for "more boobs!" and "boobs please!" anywhere and everywhere was getting a little nuts. She'd ask other people for boobs, too, which was just great. This wasn't the primary reason we needed to stop, but it was a contributing factor.

I was absolutely ready to wean her six months ago- I was no longer enjoying breastfeeding, and in the last few months we've been through several rounds of her biting me, slapping me, wanting to feed twenty times a day, wanting to feed to go to sleep... Breastfeeding her was taking up hours and hours of my time, and because she was such an addict it was also affecting her eating. She was always full of milk, so she was never hungry, but at the same time milk wasn't really working to keep her satisfied.

Don't get me wrong, snuggling up with her was still one of the nicest things to do- but we can have cuddles without boobs, and we were well past our time to finish.

I can't believe we managed 18 months of breastfeeding after the start we had. It's going to be one of those things I look back on at the end of my life as a huge, huge achievement. Honestly, though, I don't think I'll breastfeed future kids for quite as long. I guess we'll see when we get there.

I spent a lot of weeks researching how to go about weaning Sophie, because it's a very complicated thing to do. Nothing I found was really helpful, because every case is so individual. In our case, she doesn't drink enough from a cup to wean her straight to that (she gets bored with it too fast). She'll take a bottle at daycare, but not at home- but we were sure that was only because she preferred the alternative. We couldn't really step down slowly and reduce feeds week by week because she was a notorious snacker, and didn't have set times that she fed.

We were left with one option: cold turkey. I was a bit worried to read all the stories out there about how traumatic it was for both mother and baby to go cold turkey, but I just couldn't see an alternative.

So we thought it through, and then the ANZAC Day long weekend (and our 5th wedding anniversary) came along, and we realised what we had to do. If we all got up one morning and I suddenly started saying no to Sophie when I'd said yes every time until that point, she was going to be confused and upset. There was going to be a limit to how much we could distract her. And she still wasn't going to take a bottle while the alternative was right in front of her.

The solution? The best anniversary present ever- my amazing husband sent me off to my best friend's house for four days, and looked after Sophie alone. With me out of the picture, she drank her bottles (begrudgingly) and was (somewhat annoyingly) cheerful to have no mother. Paul and I spent all of Sunday together on a wine tour and went out to breakfast on Monday morning, so we did get to see each other a little. I got to spend the weekend relaxing, going out for lunch with my mother, doing a little writing, and sleeping through the night without being on alert for the first time in almost two years.

I hired a breast pump from my local chemist, and waited until the boobs were very engorged before using it. Even then I only pumped until the hardest lumps were gone. I was curious to see how much milk I'd get, because in hospital I never managed more than 120mL and was considered to have such low supply that I had to pump, feed, AND top up with formula. Well, after 18 months of breastfeeding (six exclusive), I got... 110mL! So much for increased supply, huh? I have an 11kg child to show that my milk supply *is* actually all right, so I'm pretty sure it demonstrates that the pump just isn't as effective as a baby. The first day I got about 250mL in total, the second about 200, the third 100mL- and that was the last time I had to pump on the left. The right needed a couple more goes later in the week, but on both occasions I only got 20mL. I've kept the pump for another week just in case I need it, but it's been 9 days since we finished feeding, and I think I'm all done.

I felt equally sad and relieved to feed her for the last time. Since we finished, I feel like our relationship has changed a tiny bit. She's not my little baby anymore- she hasn't been for a while, I know, but it was easy to forget that when she was feeding. She's been incredibly difficult this week- very cranky and very quick to throw tantrums, and I think it's because boobs were her number one solution when she was feeling upset, and now she doesn't have that way to make herself feel good when things aren't going her way. We also had a few nights of extreme trouble getting her to sleep (a good hour and a half of her wailing and crying while one or the other of us walked around her room rocking her), though once she's out she's been sleeping like the dead since the first night she was weaned. The last three days she's been a breeze to put to sleep again- she's drinking a 260mL bottle before naptime and bedtime (and another after breakfast for a slightly astonishing total of over 700mL per day), and I've replaced her feeding snuggle with a round of singing Molly Malone while we cuddle.

All in all, I had an awesome long weekend, she didn't miss me one bit, and the first time she saw me she immediately asked for boobs- but just shrugged her shoulders when I said no and wasn't at all upset. She asked a couple of times a day for the first few days, but never cried when I said no. After about the fourth day, she thought it was quite funny to ask for boobs just to hear me say no (and give her an eskimo kiss instead). And now she hasn't asked for about three days. I've made sure to wear high-collared shirts every day so I'm not flaunting what she can't have :)

So. I'm going to go against the grain of what most other sites on the Internet advise, and say that cold turkey is the way to go- but that if you can, spending a few days away from your little one to kick it off is the way to make it work for all of you. That way you're not flipping from "yes" to "no" in a way that confuses them; they understand that there's been a change.

I'm very excited to have my freedom back, and I'm looking forward to going on a conference or two and some outback fieldwork that I've been missing out on because I couldn't be away from Sophie for too long. Not that I want to be away from her for too long anyway, but it's nice to know that I'm no longer the be all and end all.

Talking up a storm

2010-04-18T04:47:00.000-07:00

I have a ton of draft blog posts to finish on a variety of topics, so look out for a whole lot of them coming up soon.

But for now, the biggest thing going on in Sophie's world is the absolute explosion of her speech skills. Every day she adds at least two or three new words to what she can say; she asks for things by name; she's speaking two-word "sentences", and she's starting to understand letters, colours and numbers.

Her favourite words at the moment are ball, Dai-sy, dad-dy, cheese, please, up, no-no-no-no, ap-ple, na-na (banana) and the like. She's adding both single syllable words (car, star, fish, shoe, dog, yum, etc) and double syllable words (as above).

A couple of weeks ago she delighted us with her first two-word combination- though her choice of words left something to be desired. Still, it shouldn't be a surprise for this continually milk-obsessed child- she pointed at me and demanded, "More boobs!". Since then she's also asked for "more balls" when we wandered past a toy display, and she's been saying "up please!" when she's ready to finish in her high chair at mealtimes.

She's also saying one more name- that of my other best friend from high school, Ricki, who gets called "Tee-tee" at the moment.

The biggest breakthrough has been her willingness to attempt new sounds. Before now, we'd ask her to say something, and she'd just smile at us. She'd try new things when she wanted to, not when we wanted her to. Now, we ask her to repeat a word we've just said, and she immediately does it- and most of the time she gets it right very quickly, too. All you have to do is show her what object or action the word applies to, and she's all over it- as was the case, for example, with "cheese". Beforehand, I'd ask her if she wanted a snack, and she'd run to the fridge saying, "Ssss. Ssss!" because she thought I'd asked if she wanted a "snake". She always wanted cheese, so I started telling her to say "cheese"- which she immediately did, and now does, banging on the fridge door, whenever she's hungry.

There are other ways of communicating that are getting better and better- for example, if she hurts herself, she'll come over to us saying, "Ow!" and pointing to the hurt bit. She wants us to kiss the bumped forehead or elbow or toe, and then she'll happily go on with what she was doing.

It's getting easier and easier to understand what she wants, and it's wonderful to see her experimenting with new sounds and celebrating her little victories. I love to hear her chat away and tell me about the things she's seeing and doing. And I can't wait to tell the speech therapist all about her achievements when we have our phone review in a month or two.

I'm now feeling quite convinced that the speech delay we've been talking about for the last year has been erased, so fingers crossed I'm right, and that within the fairly near future I'm begging her to be quiet for five minutes.

Daycare decisions

2010-04-05T21:45:00.000-07:00

When I decided it was time to go back to work, when Sophie was about ten months old, it wasn't easy trying to figure out how to find a good daycare centre for her. Or, for that matter, trying to figure out how on earth I could bring myself to leave her there when she'd spent ten months (usually literally) attached to me and was very clingy. She didn't sleep at home without me, which struck me as a potentially huge problem.

And above all else, there was the question of how I could trust complete strangers to take good care of my little miracle girl.

I started out by researching daycare centres in my area, before I even started looking for a job. I'd heard a lot from friends about how there were long waiting lists for many of the centres in the local area, and it can take up to a year to get your child into one. I didn't want to be scrambling to find a place at the last minute, so instead I decided to find one first, then find a job.

I looked at information, location and did a drive-by on a number of different long daycare and home-based daycare places, but in the end I narrowed it down to two that really interested me. One was a franchise of a huge national daycare company, and a little bit further away. The other was a small local centre just one street away from our house.

I visited the franchise first, with Sophie in tow. It was a big place and clear from the moment I walked in the (security-coded) door that it was very professionally run. The staff were courteous, polite and business-like; the layout was designed for maximum streamlining- different rooms for each age group, all opening off a central corridor, and different playgrounds for each age group out the back. The sleeping room for the babies was amazing- it was a separate, windowless room with LED stars on the ceiling and soft music playing. Each baby had their own cot. The babies' play-room was also fabulous- it was full of interesting toys, nice and neat and tidy.

But there were a few things that just didn't feel right to me there.

For one, the staff were very professional, but they were significantly lacking in... warmth. For another, though the playground was great, it was sitting outside with a busy road on the other side of the fence- and a concrete processing plant directly across that road with a big smokestack. And when Sophie and I sat in the babies room for twenty minutes or so, all we saw the six or seven kids in there do was cling to the two carers. All of them, like a little pack of sheep- all sucking dummies, all looking nervous and miserable. And I understand that daycare is not something all kids love, but there was a real atmosphere of miserableness in the little group that I didn't like. And lastly, they were quite keen that I stick to certain times if I wanted to come visit.

Personally, I think you should be able to go to your daycare centre at any time of the day, unannounced, to see what's happening.

The second place I visited has a strong policy encouraging just that. They'd rather you didn't visit during mealtimes and nap time, but if you do want to pop in and see what's happening, they won't stop you- they'll just ask you to visit quietly and not disturb the little people.

The second place was much smaller and much less flashy. It only had three rooms- one for toddlers, and one for babies, each opening off a central room for preschoolers. The playgrounds were less exciting, too- there was no big equipment in the baby area, just grass.

But from the very first minute I went in there, I had the best vibe from the staff. All of them were so nice and so warm. Kids were running around like crazy people, just as they should at this age, and once in a while they'd run back to their carers for a hug, which was gladly given with real affection. They played games on their own, with other kids, and with the carers. There were less dummies and there was way more chaos- toys everywhere at playtime, which is just how my house looks, too.

They were not only open about themselves, their backgrounds in childcare, their families, their philosophies on sleep and the like, but they were full of great advice about how to make the transition easier for Sophie and for me.

The owner of the centre works at the centre, and when I talked to her about Sophie's sleep problems and asked how they would deal with a baby who usually slept on her mum, she told me they usually rocked them to sleep in a pram, but would never let them cry it out. And then she told me that her own daughter is using the controlled crying method with her daughter, but whenever she babysits, she lets her grandchild cry until the parents leave, then rushes in and rescues her.

Which, you know. I would probably find massively annoying if I was her daughter, but it was very close to my own thoughts on crying at sleep time.

This centre also had a prominently displayed weekly plan that emphasised each area of development- gross motor, fine motor, problem solving and the like- and the different activities that would be done to encourage each of those areas. Needless to say, having been through all the developmental checks with Sophie, this was awesome to see. They also had a board showing what was on the menu for morning tea, lunch and afternoon tea each day, and a space for each child to write up how much milk they drank and what their nappies were like through the day. This is good stuff for a parent to know.

So, obviously the good vibe of this place was so strong that I wanted Sophie in there. And fortunately they had places available on the days I wanted, too. I signed her up for two days a week, and within a couple of days I found an advertisement for the perfect job: an office-based heritage research position, two days a week. I applied, I got it, and it was all rolling.

Then came the matter of actually leaving her.

Sophie was smack in the middle of her second huge separation anxiety phase, and if I so much as walked out of a room for ten seconds she'd cry. I had no idea how I was going to leave her at daycare and walk away for a whole day, because I knew what she'd do- she'd cry for hours.

Sadly, I wasn't wrong about that.

But we started out with a couple of days of orientation a week- I went in with her and sat there for about an hour, letting her explore the place at her own pace without even hinting that I might leave her there. It was good for her to see that I was comfortable- and it was good for me to check out in depth how the carers interacted with the kids.

We did that for a fortnight, and then it was time for me to leave her for a half day. We had planned to go out to the movies while she was there, but in the end it didn't seem right to put ourselves out of contact in case she needed us. Following the suggestions I'd heard from the staff, read online, and in the Dream Baby Guide, I told her mummy was going out now, and I'd be back later. And then I handed her over to the nearest staff member, and walked out.

Oh, boy, did she scream. But I felt okay, because I trusted the carers there to take good care of her, and I knew that it would take a little time before she could trust the environment. It was something she had to figure out on her own, with their support- not with mine.

Well, she screamed her head off for a good couple of hours, then fell asleep in someone's arms, then woke up and continued to scream until I picked her up. Same the next day. The next week I actually started work, and an hour after I left her at the centre, just as I was walking in the front door of my new office in the city for my first day, I got a call on my mobile. Sophie had broken out in spots, and was showing all the signs of Hand, Foot and Mouth disease. They had her in isolation, and could I please come and pick her up immediately.

[Insert four-letter word here].

As it turned out, there'd been an administrative mix-up at my new office, and they weren't expecting me until the next day anyway. So, I rushed home, picked up my unwell munchkin, and the next day Paul stayed home from work to look after her.

Ever since then, we've done the same thing about once a fortnight. She gets *everything* going- every cold, virus, tummy bug- and she passes them to me. I can't remember the last time I was so sick so frequently- probably when I was her age! This is, unfortunately, just part of the daycare experience. But I console myself with the knowledge that she'll be immune to just about everything on earth within a few months.

So, the next week marked her first real week at daycare. Both days she screamed when I dropped her off, and kept screaming until she fell asleep. But she did stop screaming long enough to eat lunch and do some painting, which was a good sign. Every now and again, she'd remember there was no mum, and she'd start up again. At the end of each day, she'd burst into tears the moment she saw me and wail her head off.

This continued for about a month, and then she got to the point where she'd only cry for a minute or two in the morning (I could hear that she'd stopped by the time I got back out to my car), and not at all for the rest of the day. We went to the Christmas party in December, which was fabulous- a magician, amazing food, all the kids of all ages running around like crazy people- lots of fun, and as I watched her toddle her way through the mass of people, not worrying where I was for a minute, I realised she'd broken through the independence barrier and was starting to get confident.

Fast forward four months to now, and we've had a couple of new milestones in recent weeks. First, she's stopped crying when I drop her off in the morning. Now she waves goodbye over her shoulder as she's running off to play, and won't even kiss me. And we've had a crazy turnaround in the afternoon- a couple of weeks ago when I picked her up, she was having so much fun that she cried when I went to take her home! Boy, that makes you feel loved.

Anyway- I can't even count the number of things daycare has done for her. Because she's spent time at such a fantastic place, she's a hugely independent little person now, when she was a very clingy one before. She started sleeping in her cot at daycare before we could get her to do so at home. She's learned to blow kisses, paint, feed herself with a fork, and lots of other things through daycare. She knows where her bag goes and when it's time to go get it; she knows to hold my hand when we walk out to the carpark. She knows all the staff by name (by which I mean she can point to the right ones when asked) and all the kids, and when I ask her if she'd like to see someone particular, she runs to the front door and demands to be taken to the car. I don't ask that unless we're actually going to daycare anymore, because she gets so worked up if we don't immediately get in the car and go.

At Christmas and Easter, she brought home little handmade presents for me- one a paper ornament for the tree which she'd covered (with help, obviously) in glitter; at Easter a little paper bag full of chocolate eggs. I can't wait for mother's day next week! The centre is holding a mum's evening for all the mothers, which is another of the lovely things they do.

So, from something scary to something fantastic, I'm so glad she's going to daycare- bugs notwithstanding. It's made a hugely positive contribution to all of our lives. I love being back at work and getting a little bit of time to just be me. She loves her Sophie time at daycare and she's developed fantastic relationships with a whole range of people outside her family, which is brilliant for her self-confidence. I shall leave you with a concise little list of the most useful advice I got about daycare, and I hope if you're reading this because you're worrying about leaving a little one in someone else's care that all goes as well for you as it has for us.

1. Pick consecutive days for daycare if you can when you're just starting out. If they go on Monday and they're upset by it, then they have a day home with you on Tuesday, then they have to do it all again on Wednesday, it'll take them until Friday to settle down again. If they go on Monday and Tuesday, they'll be over the upset by Wednesday.

2. Take the time to sit in the centre, watching the way the staff interact with the kids. Talk to the staff- not "interview" style, just chat. Trust the vibe you get from them, and from the kids. Talk to them about issues that you feel strongly about- crying it out at sleep time, dairy intolerances, hygiene- anything that concerns you, check out people's individual thoughts on the matter, and the organisational policy.

3. When you're dropping your child off, don't linger too long. Don't run straight out the door and abandon them without a word, but don't let them think you're going to stay all day, either. Have a solid routine for the drop off so they learn to know what's coming next. In our case this is:

Walk in together
Put Sophie's bag away
Put her bottles for the day in the fridge
Go out to the big kid's room and see what games are out for morning play
Tell her mummy's going to work, and I'll be back later
Ask her to wave goodbye to mummy and blow a kiss

She knows that this all ends with me leaving, and after a few months, she also knows I'll be coming back in the evening, so it no longer upsets her. She's learned to trust that mummy always does come back, and that in the meantime she has friends to take good care of her.

4. On the other hand, do linger for a while if you can when picking your child up for the day. By going in and sitting down for a while, you achieve a few things. First, you show them that daycare is a comfortable place, and if you're happy to hang out there, so should they be. Second, you create enjoyable memories for them. Third, you get to know the names of the other kids in their area, which means you can talk about them at home and remind them of their friends. And fourth, it gives you a chance to talk to the staff informally and pick up any vibes that might not come out in the official conversations you have.

For example, occasionally when I sit down and play with Sophie, different staff members of her daycare centre will make a slightly snarky comment about one of the other staff members. This is run-of-the-mill workplace stuff, but it also tells me to keep an eye on things when that person is running the show.

Sure enough, a few weeks ago when I got Sophie home from daycare, I discovered that her arm was bleeding. Yes, actual blood. Coming out of two very deep tooth marks on her forearm. One of the other kids, and not the smallest variety by the look of things, had taken a bite out of my kid. When I mentioned this to the complained-about staff member, who'd been in charge on the day, she professed to know nothing at all about it. But I'm pretty sure that Sophie would have screamed the house down when it happened, because I know her fairly well. And so I was left wondering if that person just hadn't been paying attention, or was actually attempting to downplay it on purpose.

I mentioned it to a different higher-level supervisor, and her response couldn't have been better- she immediately filled in an incident report form and took it very seriously. For me, that's what I need. I'm not worried about this other staff member, because she works in a team- there are always two staff on duty. What I need is to make sure that the organisation has a strong coordinated approach to dealing with these kinds of things, and then I'm happy. Sophie hasn't been gnawed on since.

Anyway! That about wraps up my daycare advice, since it's now a million pages long.

Sitting exercises

2010-03-14T05:41:00.001-07:00

This is quite a particular post for a particular mum out there who's trying to work out some ways to get her HIE baby sitting unsupported, but hopefully it might help some others in a similar situation.

Sophie was sitting unsupported by the age of about 6-7 months, which is pretty early and was a major part of her being declared developmentally fine by 8 months. But the range for kids everywhere is 6-8 months, and in this Dr. Spock article, and in this one, it's generally not too concerning even if they're not sitting unsupported at 9 months, as long as they're showing signs of good head control and trunk strength.

That being said, there are lots of exercises you can do to help them figure out unsupported sitting, and it was only because she did these exercises in physiotherapy that Sophie got her balance and strength when she did. She had to do the exercises because before that time she was showing absolutely no signs of figuring it out. It still took her an extra month after she learned to sit before she figured out how to a) roll over (that's supposed to come first), and b) push up with her arms while lying on her tummy.

1. Teach bub to use their arms for support while sitting

This is the major key to getting them upright and unsupported, because it's what they have to do before you can happily leave them to their own devices while sitting. Until they master the prop, you know they'll just keel right over if they tip sideways. Once they can prop, though, they can stop themselves from falling over, and it's just a short hop to crawling from there.

The simple exercise we did which paid instant dividends was this:

You sit on the floor, and place your baby sitting between your legs with their back to you, so you're supporting them in their sit. Then take their hands, and lean them forwards, each time putting their hands on the floor to "prop" them. You're showing them how to use their arms to stop themselves from falling forwards.

The physio also had us tip Sophie (slightly) side to side to encourage her to put her arms out for balance.

2. Help them develop better balance and reflexes

I learned this one at Gymbaroo rather than physio, but it worked very quickly when Sophie was starting to crawl. A lot of their balance relates to their inner ear, and a good way to "calibrate" their balance is by using a fit ball. You put them on it on their tummy, holding onto their legs, and then you slowly roll them forwards until their hands touch the ground. This also teaches them to put their hands out to prop.

3. Encourage trunk strength with rolling exercises

Get them to roll over as much as you can- either by putting something interesting off to one side if they're already able to roll, or by rolling them over with your hands on their hips to show them how.

4. Encourage good head control with tummy time

You hear so much about tummy time these days that it's easy to get a bit sick of it. But it's very important to a whole range of other things, like sitting, because tummy time= neck strength and trunk strength, which is important for balance.

Sophie wasn't too keen on tummy time, and she didn't learn to prop with her arms until she was seven months of age, and already sitting at that stage. But still, we persisted with sticking her on her tummy whenever we could- a few minutes at a time when she was grumpy, and using a rolled up towel or blanket under her chest to give her a bit more support. This site has quite a lot of tummy time info.

Tummy time with a cushion at 4 months:

5. Give them practice

Put them, sitting, on a soft surface- and don't be afraid to let them fall over. It seems counter-intuitive, but it teaches them that they need to balance, and it also encourages them to use their trunk muscles to stay upright, not to mention their arms.

Sitting with support at 5 months:

Sitting unsupported at 6 months- still wobbly, but almost there:

Completely confident by 7 months:

And crawling a couple of weeks later:

6. Bumbo seat and distractions

Another thing that really helped us was the Bumbo seat. It wasn't so much the sitting practice as the amount of twisting that Sophie did while she was in it. I used to get immensely frustrated that she wouldn't just sit up straight, but I never realised that it was the twisting from side to side to reach various objects that was doing her the most good, because it was strengthening the right muscles in her trunk.

Any distraction will do:

So, if you have a Bumbo seat, try putting toys to either side so they can twist and reach. We also had little socks with bug rattles sewn onto them (Lamaze Gardenbug wrist rattle and foot finder)- they went on her feet, and we encouraged her to cross the midline by reaching for each sock with the opposite hand.

We also encouraged her to pull herself up to sitting (kind of like an ab crunch or a sit-up) with things like toys attached to the bar of her stroller, just out of her reach (here's the one we really wanted but couldn't find at the time- the Playgro Twirly Whirly pram toy). All these things gave her the trunk strength she needed to hold herself up.

Bits, bobs and babies

2010-02-17T05:56:00.000-08:00

We had our meeting this morning with the speech and occupational therapists at Princess Margaret Hospital as a bit of an Early Intervention review of how Sophie was doing.

Unlike Monday, this session went *exactly* as we expected.

From the first, Sophie was into absolutely everything in the room, and she immediately found one of her all-time favourite toys- a baby doll- and tucked that under her arm to carry with her while she explored everything else. I think her therapists were somewhat floored to watch her in action, as I often am, too- she's so chipper and chirpy and interested in everything, you can just see her little brain sponging up every bit of information it comes across.

Anyway. The occupational therapist was testing out her fine motor and problem solving skills, as well as her personal social interaction. She had a few notable successes, amongst a very solid session of doing everything she was supposed to- her shining moment came when she was handed a small jar of bits and bobs (they were little jacks or something), which she was expected to tip out onto the mat. Of course, if they'd been baked beans they would have been on the mat in a nanosecond, but no. Instead she proceeded to impress the heck out of the OT by delicately fishing each individual doodad out of the jar with her perfect pincer grip, then once she had a nice pile she returned each and every single one to the jar one after the other- and for good measure, picked up the lid and screwed it back on.

Screwing the lid back onto things is a milestone for two-year-olds, not almost-fifteen-month-olds.

She's very good at it, though- loves to put the lid on and take it back off my water bottle and a variety of other things. Nothing is safe in this house! It's terrible. But good for her fine motor skills, anyway.

With that and her other abilities (like building a nice neat tower of tiny blocks without being asked, or putting a round rod into a small hole with no trouble at all) it was no surprise to hear the occupational therapist say that she's way ahead of expected development, and really doesn't need occupational therapy any more at all.

Nonetheless, she did advise that we should keep our referral active with the outside child development centre (the waiting list for OT is up to 12 months anyway, which is a bit shocking). Although she was telling us the exact same thing as the physiotherapist did on Monday, her way of putting it was a lot easier to swallow- she recommends keeping the appointment simply because we have the chance, which so many others do not. It can't hurt to have them see her in six months and say, yep- as we always thought, she's still fine. But on the other hand, if she's four years old and starts to have trouble using scissors or writing her letters, and we realise it's something that could have been corrected earlier, we'll be kicking ourselves.

So, that's okay. We'll take that.

The speech therapist was also very impressed, particularly with her enormous range of animal sounds as highlighted in my previous post on communication. She's way ahead of what would be expected at this age with that, and she's also way ahead on the number of body parts she can name. One or two animal sounds and the same number of body parts would be expected at this age, so she's all over it.

Sophie's receptive language is, also as expected, phenomenal. Her ability to understand what she's asked to do is way above par. Her play skills are also fantastic, as demonstrated when she shared her drink with her doll and then with me, amongst her many other very social games.

The speech therapist did say she would hope to see Sophie using a few more words a bit more consistently by this stage, but given Sophie's abilities with her animal sounds (which do count as words) and the way she uses the sounds to describe things (as in, she'll point at a car and say, "Vrooom!") there's no doubt she'll be all over the words fairly soon. Her responses to us when we talk to her and repeat her noises back are also good, as are the babbles and chats she does when she's playing by herself (like when she used me as a ladder to climb up onto the couch, then proceeded to sit there like the queen taking tea, chatting away).

The other impressive language-based things she did were her signs, like shrugging to ask where something has gone, and waving bye-bye when she decided she'd had enough of this new place (she often does this). She also demonstrated her excellent book-reading skills by picking up a book and flipping through the pages until she found things she recognised- a car and a baby- and pointing those out by name/ sound. She saved her piece de resistance to last, which is the operatic kiss-blowing she's learned to do at daycare- two hands, done with a huge smacking kiss then a big flourish of arms open to the sky.

This little move charms anyone who sees it, and her therapists were no exception.

So, instead of a six month review, the speech therapist is going to call us up in about three months' time to talk through her development on the phone. Assuming she's still doing as well as she is now, and on track for her 18-month milestones, that will be the end of speech therapy for now.

We'll still be seeing the developmental paediatrician, probably next month, but otherwise I think that's most of our assessments out of the way for the next six months. I feel a lot more positive after today's sessions (obviously- nothing wrong with being told your child is massively ahead in their development!), and I'm no longer looking at those sessions in six months being something we have to worry about a great deal in advance.

I think all the therapists agree that from now on, all we have to do is keep on doing what we've been doing, because we've done a great job so far. She's a social, happy, bright and extremely clever toddler, and doing everything and more than would be expected for her age.

A little problem solving

2010-02-17T05:51:00.000-08:00

I'm about to post another update from our session today with the occupational therapist and speech therapist, but I thought this was worth a little mention of its own.

Yesterday when I was picking Sophie up from her wonderful, marvellous daycare centre, she was playing with one of those shape-sorter boxes. This one had a lid with four holes- one a round shape, one square, one triangular and one a star. Testing her out a little, I handed her a round block and asked her to put it in the box.

She looked at the box, looked at the block, then looked up at me like I was an idiot- and promptly removed the lid from the box altogether, dumped the shape in there and put the lid back on.

Talk about your problem solving ability, huh? I nearly wet myself laughing at how matter of fact she was about it all. The look said, why would I bother trying to insert a block through a stupid hole when I can just take off the lid? :)

This kid is *smart*.

Sophie adventures

2010-02-15T05:52:00.001-08:00

After a couple of very wordy posts, here are a few recent Sophie pics to break it up a little.

First up, an interesting little contrast- a pic of Sophie sleeping recently, right next to one of her sleeping exactly 12 months earlier. So much has changed- and still so much hasn't. She's still my tiny little baby girl at heart, no matter how tall she gets (I know I'll be saying this when she tops me by a head).

Here's Sophie's interesting autumn fashion outfit- mum's shirt, one sock, and ketchup slathered all through her hair after a particularly interesting lunch. I'm not sure it'll catch on, but you never know.

We go to the local zoo quite a bit- we got annual passes a few months ago and it's brilliant. She's now at an age where she can do most of the animal noises- and in fact, her favourite (outside of birds who go, "Toot!") is probably the lion saying, "Raaarrr!". On this visit the lion was right up in the window of her exhibit roaring her head off- an exciting moment for all. These pics include Sophie pointing at a lizard, and getting some interest in return:

Pointing out a meerkat or two to her mum:

Feeding her snacks to dad instead of herself (very generous!):

And lastly playing peekaboo:

Sophie loves to help in the garden- though her version of "helping" may not be exactly what her dad and I really need. Still, it's cute.

Here she is offering to help with the washing line:

And, having been successful with that request, organising the pegs for us:

Here we have a few cheeky poses- one running, one climbing, one just standing around looking anything but innocent, and another a big cheesy grin:

Here she is, asking to be chased and tickled:

And here's the tickle attack from mum:

Rollercoaster riding

2010-02-15T05:04:00.001-08:00

It's been about eight months since we last visited Sophie's specialists, which has, frankly, been a wonderful break from all the worry.

Before that time, we saw a physiotherapist and an occupational therapist every couple of weeks; we saw her neonatologist and her neurologist every four months, and we also saw a speech therapist a couple of times. The big break has been because she was doing so fantastically well at her last appointment that she didn't really need any further assistance- just ongoing monitoring. But the early intervention team had expected that she might be ready for discharge from the program by February this year.

So, it was with quite a lot of excitement that we prepared ourselves for the appointments we have this week. First up, this morning, was a visit to a new physiotherapist at an outpatient child development centre.

Sophie's physical skills are amazing, and from what I've read (in the ASQ survey and in lists of 15-month-old milestones) they're definitely on par and even a little ahead of what's expected. Talking it through yesterday, we both agreed that we'd stake our house on an all-clear from the physiotherapist today.

You can imagine our (fortunately not homeless though) disappointment, therefore, when the physiotherapist did NOT give Sophie the all-clear after all this morning, and instead told us that while she's doing everything age appropriate, she also has some low muscle tone in her ankles, hips and trunk. This is affecting her balance slightly at present, meaning she's not too confident to walk down a slope though she's happy to walk up one (me, I'm thinking that might be because she stacked it in a big way down a grass slope at the park a couple of weeks ago and slid down the whole thing face-first). Also, she can't balance on a balance-beam. And she can't walk backwards.

Okay, I'm just going to say it. We all know I get a little counter-productively defensive about this stuff, but come on. She's 14.5 months old. A lot of kids aren't even walking by this age, and Sophie is <...> this close to running. Sure, she's got more balance to develop. Sure, she needs to figure out this backwards-walking business. Sure, she's not going to make the Olympic gymnastics team juuust yet. But... are we maybe asking a little too much of her for this age?

Paul had a lot of very sensible things to say about all this, and lots of others have reminded me that this is not a bad thing- in fact, it's a chance to catch any problems she may have before they really become problems.

But dammit, I don't want to avert problems. I don't want her to HAVE problems in the first place. I want them to tell us that we never, ever have to attend another stupid session of ANY kind of therapy, ever again.

Unrealistic, perhaps, and probably a bit ungrateful considering all the blessings we've already been given with her good health. But then again, maybe not. Because our afternoon session with the neurologist had a decidedly different tone to it.

This was not our normal neurologist, who can sometimes be a bit of an inadvertent killjoy and has once in a while doled out worst case scenarios right when we needed some positivity. Instead we had a lovely lady who was very upbeat and actually disagreed with the physiotherapist's assessment (in particular her diagnosis of low tone). In her opinion, Sophie's tone is just fine, and so is everything else, including her balance. She's up to date and ahead in pretty much every area. And that's what we always thought.

I guess the difference comes in what they're each looking for. The neurologist commented that in a child who has had such severe damage as Sophie, it's very difficult to believe that she could possibly get away without a single problem. As a result, specialists tend to look very very hard to see what they expect.

Sophie was very cheerful, active and right on song for the neurologist, whereas she was a little hesitant around the physiotherapist, who pushed her to do quite a lot of new things. That makes a bit of a difference, I think.

The neurologist was able to give us some interesting new information about Sophie's original injury- she told us that frontal lobe damage, in her experience, rarely comes to anything when other areas are functioning well. This was very interesting, as behavioural/ personality problems were something we were very afraid of as a result of frontal lobe damage. She also told us that the damage to most of the rest of Sophie's brain was not particularly severe- extensive, yes, but scattered in very small patches (this we did know). The one area that was quite badly damaged was her left parietal lobe.

In her opinion, damage to this area means that we should be on the lookout for any possibility of "blind-spots" in Sophie's right-side vision. Not areas that she can't physically see, but areas that she can't *interpret* what she's seeing. This is quite a fascinating possibility- I recently read about a phenomenon of brain damage in the same area in which an afflicted adult could identify an item placed in his left hand, but not in his right. I'm pretty sure, though, that we won't have to worry about this- Sophie's vision and her ability to interpret what she sees is perfect. She demonstrated that today by starting to roar as soon as she entered the consulting room, which had us all confused until we noticed a big picture of a lion on the wall.

Both specialists want to see us again in six months.

The physiotherapist says this is to continue monitoring Sophie as she heads toward milestones that might be affected by low tone in her ankles/ hips/ trunk, such as running and jumping. She doesn't need intervention for her low tone, which should correct itself- just needs an eye kept on her progress to make sure it's all going okay.

The neurologist wants to see her in six months so that she's past the big 18-month-old milestones and they can better assess things like language skills. They expect Sophie will be discharged from the neurology follow-up program at that stage, unless something else comes up (does this sound like a familiar pattern? Oh no! :)). What they do want to do, though, is include Sophie in a clinical study of babies who had terrible MRI scans after HIE, but have had excellent outcomes.

There's quite a list building, apparently, and this is (I would imagine) mainly because the hospital, Princess Margaret Hospital for Kids in Perth, is one of the world leaders in the cooling treatment Sophie received. Our new neurologist was in fact one of the original people involved in the initial trial of the treatment in about 2004, and was a co-author of one of the definitive papers on the topic, which was published in 2006. Cooling treatment is now no longer a trial at PMH, but rather a standard approach for all babies who meet the criteria.

And for that we'll be forever grateful. I kind of wanted to hug her on the spot for all she's done through her work- but Sophie, being better able to get away with these sorts of things, gave her a big wet kiss on the cheek for me instead.

Anyway. We started the day with unexpected disappointment; we ended it with renewed hope. Now we just have to wait and see where we finish up on Wednesday morning after we meet with the Early Intervention Team and have her speech, problem solving and fine motor skills assessed...

Language skills

2010-02-10T00:29:00.001-08:00

We're edging ever-closer to Sophie's appointments with all of her specialists next week, and as we lead up to those we're (naturally) trying to second-guess what they'll tell us.

I'm pretty sure they'll say her gross motor, fine motor, personal social and problem solving skills are way, way ahead of schedule. Any other answer would surprise me.

But I'm still unsure what they'll say about her communication skills. Until the last couple of weeks, her use of "words" has been a little bit questionable. By 15 months, she's ideally supposed to use somewhere between 3-10 words (in addition to mum and dad). A couple of weeks ago, she had figured out a few words, most of which were animal sounds. But she was definitely not consistent in her use of those, and she didn't say them without a lot of prompting from us.

Animal sounds, despite my initial misgivings, are indeed valid words according to our speech therapist (they're mentioned here, too), and if you count all the ones Sophie knows, then she's actually running ahead of the pack. She's also now using her sounds to name things- for example, she'll point at the cat and say, "Meow!"

In addition to a huge range of animal noises, Sophie has now also added a range of words and names to her vocabulary, and she's using all of them a lot more consistently.

Mum- "mum-mum"
Dad- "da-da"
Daisy- "dai-dai"
Sheba- "a-ba"
(Aunty) Emma- "Em-mmma!"
Grandma- "a-ma"

Cat- "meow!" (and occasionally, "hisssss!")
Dog- "wu-wu!"
Sheep- "baaaa"
Cow- "moooo"
Snake/ lizard- "sssss"
Lion/ tiger/ bear- "raaaarrr!"
Bird- "toot toot!" (her version of "tweet"- cutest thing ever)
Duck- "kook!" (her version of "quack")
Elephant- "pnoooooo!" (though often, the elephant also goes, "raaaarrrr!")
Mouse- "peep!" (her version of "squeak")
Car/ sometimes also aeroplane- "vrroooom!"
Baby- "wah!"

There are also quite a few things she can name or say, and quite a few actions she can request:

Duck- "duck"
Baby/ doll- "baba"

"Boo!" (when playing peekaboo, which she does on command when asked "Where's Sophie?"- will hide around a corner and pop out saying "boo!" to the dog, repeatedly, and thinks this is a great game)
"Tic-kle! Tic-kle! Tic-kle!" (I love this one :)
"Up!" (pretty rarely do we get this one, but it's usually accompanied by little arms up)
Asks for things with pointing plus "Eh? Eh? Eh? Eh?" (ad nauseum until you hand over whatever it is!)
To indicate that something is yummy (re food), she'll say "Mmm, mmm!"
Says "Oh"/ "whoa" when she hurts herself/ drops something/ breaks something

She uses several "signs" to get her point across, too:

Yes- (nod)
No- (shakes head)
Where has (miscellaneous thing) gone?- (both hands turned up, shrugs)

We also get lovely singing along to a range of things, which is basically, "la la la la laaaa!"

In addition to what is becoming a pretty hefty list of expressive language abilities, it's her unbelievable range of receptive language that makes me feel she's doing pretty well with her communication. I'm talking about her ability to understand and respond correctly to questions and requests. It's not just the fact that she can do all these things (which is pretty amazing to me in the first place), but that she knows exactly *which* thing to do when you tell her to, which means she understands both the words and the concepts and knows the appropriate response.

If told to, she'll do all of the following things:

Find her-

Toes
Feet
Tummy
Fingers
Hands
Mouth
Nose
Ears
Hair
Eyes (sometimes- still figuring this one out)

Correctly point out her mum, dad, dog, cat, any family member (aunts/ uncles/ grandparents), plus a whole range of animals/ objects in story books, plus all the staff members and kids who attend her daycare (she knows them all by name).

Dance (she loves to bop up and down, swing her arms around and headbang)
Sit down
Lie down
Stand up
Spin around in a circle
Clap
Splash
Wave bye-bye, hello, or goodnight
Blow kisses with one hand or two
Give big kisses and cuddles
Throw or kick the ball
Make the truck go vrooom! (move it back and forth across the floor)
Build a tower of blocks
Pull apart two pieces of Duplo/ pull the cord on her toy lawnmower
Push her trolley/ push a person toward what she wants them to do
Pull out the bath plug
Water the garden (holds the hose and sprays it side to side)
Read a book (gets her book, opens it up and peruses)
Cuddle/ snuggle/ pat/ stroke the cat/ dog/ her teddies or doll
Pretend to feed her doll with a spoon, or change her nappy
Feed herself/ others with a spoon (scoop it up, in your mouth, in mummy's mouth)
Have a drink of water (takes a sip from her cup)
Wipe her face/ nose (with a tissue/ napkin after dinner or when she has a runny nose)
Wash her hair
Wash herself (actually pushes the soap squirter then rubs both hands over her tummy/ chest)
Brush her hair
Brush her teeth
Tickle her mum, dad, toys, other kids
Stacks on dad when suggested (for non-Aussies, this means tackle him wrestling-style, preferably with an elbow to the gut for good measure :P)
Close the door
Nods/ shakes her head when asked if she likes/ wants something (cat/ dog/ water etc)
Lift her feet and lean on mum for shoes to be put on; lift feet for pants to be put on; stretch arms through arm-holes to get dressed.
Gives things to mum/ dad or takes them when told "ta for mummy" etc.

Then there's a whole host of things that require her to understand more than one concept- for example, that in order to do what she's just been asked, she needs to go to another room or go get something:

Go to her room when told it's time for her nappy change or a sleep
Go to the bathroom (at her house and at her grandmother's house) for a bath
Go to the front door when I say it's time to go in the car
Go to the back door when I say it's time to water the garden
Go to her high chair and pick up her bib when I say it's time to eat
Find her shoes or her clothes when asked; find mummy or daddy's shoes (very useful!!)
Find her teddy/ ball/ truck/ book/ water bottle
Put any of the above back in the correct place when finished (pack away the toys/ pegs etc)
Take (miscellaneous object) to daddy/ mummy/ whoever she's told to
Get the dog's ball/ chew toy and throw it, then repeat (keeps them both occupied- love it!)

There are also lots of songs and nursery rhymes she recognises and does the actions for, or at least prepares herself for:

Twinkle Twinkle Little Star
Eensie Weensie Spider
If You're Happy and You Know It (clap your hands etc).
This Little Piggy
Round and Round the Garden

So, that's quite a list, and I know it doesn't cover everything she can do- I'm sure there are quite a few I've forgotten. But one thing's for sure- in the course of writing this list I think I've changed my mind about the predicted outcome of the speech therapy session next Wednesday!

She's so amazingly bright. Just now I held out my hand and told her to shake it, and she actually did it. I've only shown her that once or twice before. Anyway! I'm sure the official assessment will be very interesting. I just hope she's on form and not having one of those days where every animal says, "Meow!". They happen occasionally- probably no surprise when you consider the sheer volume of all the words and ideas filling her little brain right now!

I'll leave you with another very interesting article about toddler speech- this one contained something I found very interesting, which was that toddler words for various objects might not be the same words we adults apply to those things. But as long as they apply the same sound/ word to the same thing each time, it's still a word. This was a good revelation to me while I was worrying about how many "real" words she was saying.

They said she might never walk...

2010-01-30T05:50:00.000-08:00

... but baby, take a look at her now!

Sophie has now been walking for about three months, starting when she was just 11 months of age. She's getting faster and more sure of herself with time (naturally), and now happily wears shoes when we're out and about without them tripping her up.

We took the dog to the park today, and as is her way lately, Sophie did a lot of the walk herself instead of sitting in her pram. As I was watching her chase her dad and her dog across the oval and back again (ad nauseum), I couldn't help but marvel, as I always do, at what she's overcome. This kid was not supposed to be this healthy. She wasn't supposed to be walking, let alone running. But by God, she's doing it, and absolutely nothing will stand in her way. It's a little frightening, actually- she's now progressed to climbing up on the couch, and I'm having to watch her like a hawk to make sure she doesn't fall straight back off and damage her precious melon.

Out for her walk:

Walking the dog:

The three musketeers:

She loves to push the stroller rather than sit in it:

Then it was off to her uncles' house to help with the garden renovations:

With a few ball games thrown in:

And a bit of running practice down the driveway:

And last but not least, on the way home from the park we noticed Sophie doing some weird breathing in back. It took a minute to figure out what she was up to, and then we realised she was imitating the dog, who was panting after her walk. I'm astonished that she came up with this bit of amusement all by herself:

NICU survival advice

2010-01-28T21:33:00.000-08:00

I mentioned a couple of weeks ago that we had put Sophie's story up on the graduates board at Princess Margaret Hospital. Just this week I got my first email from someone who read it while their child was in the NICU and found it helpful (hi Kelly!). I'm glad to say mission accomplished.

I tried to cut Sophie's story down to one page, but you know me- there was absolutely no chance of that happening. In the end I settled for a nice round three pages.

You'll read most of what was in it here in these pages, but one part I haven't posted here before is my five top tips for surviving your time in the NICU (and after). These are the most important thing we learned in our 19-day stay:

1. Get out of that NICU as often as you can. Go do “normal” things, and don't feel guilty about it. Trust us, before you know it you'll be home with your baby and you'll appreciate having had the time to de-stress and really absorb everything that's happening to you. At the moment you probably can't even imagine that, but you'll get there, and then you'll be like every other exhausted parent- only you'll still be dealing with an emotional trauma most people will never experience. Take good care of yourselves right now.

2. Talk, talk, talk, to your partner, to your family and friends, to professionals, and to yourself. Don't hold back- let all your grief out now so that it doesn't sneak up on you later. See yourselves and your family and friends as one big team, and get all the support and help you can.

3. Seek support. There are in-person and online groups for every medical condition, for NICU graduates and for parents whose births have not gone as planned. Hunt them down, join up, and talk some more. It helps to hear from people who've been where you are, and to see how things are going for them years down the track.

4. Don't be hard on yourself if you still feel sad about all of this months from now. What you're going through is an incredible trauma with long-lasting impact, whether or not you take home a completely healthy baby. Take advantage of resources like social workers, psychologists and psychiatrists (available at King Edward). I saw all three, and I took (and am still taking) anti-depressants. Acknowledging how awful that time was proved important to me accepting my feelings about it.

5. Remember, nothing is set in stone. No matter what your child is facing, there are things you can do to make it better, and therapies and techniques to help them develop to their maximum potential. Try to research the solutions instead of the problems- it's all too easy to find bad news out there, it doesn't necessarily apply to your situation and it won't fix anything, so it's not worth the stress.

Shoes!

2010-01-28T21:18:00.000-08:00

I'm going to have to admit it. Despite my protestations of tomboy-ness, I love, love, love having a girly girl. All the gorgeous little pink clothes, the embroidered details, the sparkles- love it all. It's amazing I haven't bankrupted the whole family with all the little Things I can't resist getting for her.

I'd probably be spoiling her rotten regardless of how we started, but we certainly did get ourselves into a habit while she was in the NICU- we were hellbent on tracking down anything and everything that might make a difference to her development. Music and musical instruments, clothes with different textures and details, toys with mirrors and tricks, and books and books and books- and in the end, I think a lot of our ideas really worked well.

I also have the philosophy that it's impossible to spoil your child with too many books. If she's ten years old and throwing a fit because she wants me to buy her a book- well, that's so much better than wanting me to buy her a Barbie doll, just IMO. At the moment, I can't get through the day without reading at least ten or more books to her- she brings them over constantly.

Shoes, on the other hand, *might* be a different matter. But hey, now that she's walking she does need shoes. She's about to graduate from size 4 to size 5. She currently has a little pair of mini-person's Dunlop volleys, plus a pair of sandals, plus her awesome DC Skate shoes.

Mum and I went a little nuts at the Converse shop last week when we discovered they were having a big old sale, with most baby shoes at 50% off (or more!). We *only* got five pairs- that was very restrained of us. So she now has some sandals in the next size up, some cute little red Mary Janes, and a pair of dressy little embroidered slip-ons. Plus in the next size up again, she has the coolest Converse All Stars and Keds I've ever seen.

Here's Sophie trying on two different shoes at once:

And here are the Keds:

Enjoying bedtime

2010-01-28T20:59:00.000-08:00

It's not something we EVER thought we would see, but amazingly, Sophie is not just continuing her good form with sleeping through the night in her cot- she's actually loving it.

Now when I say to her, "Almost time to go to sleep in your cot," which is supposed to be the five minute warning, she hops up and more or less RUNS to her bedroom, bangs on the door with both hands til I open it up, closes the door for me once we're in, then throws herself on the couch ready for her story-time. Like this:

She sits placidly on my lap through two stories, and when it's time to turn out the light and put on the white noise she gets a huge grin on her face. She has some milk, then I sing Twinkle Twinkle, then as soon as I start her six verbal cues she throws herself backward asking to be put in her cot, where she rolls over onto her tummy ready for sleep.

We still have a bit of work to do before things are exactly as we all want them- for one, we don't have a set routine, so she still goes to bed at unpredictable times- anything from 7:30pm to 9:30pm. As a result she still wakes up at unpredictable times- the last two days, she's woken once at 4am, gone straight back to sleep, then woken again at 5:30am. This is still 8 hours or more of sleep each night, but obviously we want to extend that to 10+, for all of our sakes. So, the things we're going to do to improve the situation are:

1. More playtime in the cot. We've been a bit slack about that since she's been sleeping happily, but we need to do more, and we need to do it without us in the room. At the moment, she's still only happy if she knows we're sitting nearby, so she's still somewhat dependent on us being there.

2. Role playing sleeptime with teddy. There are still things we would like to show her using this method- like that we'll be just outside her door if she needs us, which hopefully will show her she doesn't need us at all, at 4am or any other time.

3. Changing our actions when it's time for her to get up. I'm still going straight in and picking her up when she wakes up, which as Sheyne Rowley points out will cause her confusion- why will mum pick me up when I call out sometimes, but not others? I need to get her sitting down and playing for a brief while when she wakes up- and I need to get a schedule going so she knows what time she's supposed to wake up.

4. Removing breastfeeding from the sleep equation all together. I've continued on with feeding her before bed because she's no longer actually going to sleep on the boob- in fact, she's willingly popping herself off when I tell her it's time to finish. But she's starting to get a bit crabby about being asked to go to sleep without this step- for example, when Paul puts her to bed. It took him over an hour to settle her down last night. For reference, she's not crying during that time- she's laughing and chatting and rolling around. She sees it all as a big game. Eventually she goes to sleep, but it's not very independent.

5. Increasing her independence by gradually backing out of our interventions. For example, at the moment we pat her tummy until she falls asleep most of the time. We need to gradually move to verbal cues instead of pats, then to saying our cues from the couch, then from the doorway, then from outside the door- to not at all.

Grace's Story

2010-01-25T06:00:00.000-08:00

Today I'm very excited to present you with the first of what I hope will be a series of guest postings on Sophie's site. What follows is the story of Grace, another HIE miracle baby who was born in Queensland, Australia, just four days before Sophie. She had a similar diagnosis, also received cooling treatment, and her outcomes have been fantastic. Grace's mum Kathryn kindly agreed to share her story in the hope that it would help others see that Sophie's great outcomes are not unique.

So, without further ado, I present you with Grace's story, by Kathryn.

#

As I write this, Grace is 14 months old and such a normal healthy little girl that it’s hard to believe the journey we’ve undertaken for her to be here and that we came so close to losing her…..

Having assumed that I would deliver early due to previous surgery for cervical cancer, we were surprised to reach and go past our baby’s due date. I went into labour on a Friday night, and after around 21 hours of active labour and a second stage of 3-4 hours, I was exhausted and at one point just knew that something wasn’t “working”.

I needed help and agreed to a ventous delivery (which sadly turned into a very traumatic and violent experience). I started pushing at 1.27am and after too many pushes to remember and six pulls, I pushed bub’s head out at 1.41am. My most treasured and precious memory of the birth is reaching down between my legs and cupping the back of bub's head in my hand, feeling a head of soft, silky, moist hair, and knowing that this was my little one, someone that I already knew so intimately, here at last. The moment lasted only a few seconds, as it had become apparent (unbeknownst to us) that our bub was in trouble (shoulder dystocia). It took a further 4 ½ minutes for bub to be delivered. Our little girl was lifted onto my lower belly, and in mere seconds the cord was cut and the midwife took her away to rub her down with a towel and then take her to the resuss table (we had been told that this may be required due to the meconium, and that she would need suction, but would be returned to us asap).

The next few minutes are forever engraved in my mind. I felt overwhelmed and elated that I had done it, I’d given birth to our little girl and she was finally here with us. But that elation soon turned to despair as we knew something was wrong, there were people everywhere… I named her in those first few minutes, Grace…and then the news came that she was not breathing, there was no heartbeat, they were performing CPR. My world shattered. For nearly 20 minutes Adam and I didn’t know whether our little girl would survive. After ½ hour of working on her, Grace was taken to the Neonatal Intensive Care Unit (NICU). The doctors explained that along with the shoulder dystocia, Grace had asphyxiated during the birth. She had been deprived of oxygen for up to 8 minutes, required 4 ½ mins of CPR and didn’t take her first gasp for breath until she was 20 minutes old.

Grace on day 1:

We never saw Grace before they took her away, and Adam was only able to go and see her about an hour after she was born. When Adam returned he brought two photos of Grace for me, and that was how I saw my little girl’s face for the first time.

It was about 5 hours before I was taken up to NICU to meet Grace. I have never felt so completely heartbroken and overwhelmed as I did when I met her. Even though she had tubes and lines everywhere I fell in love with her instantly and knew that she was mine, the little bub I’d been so intimately connected to for so long. We sat with her for a long time, our hands laid on her little body, trying desperately to come to terms with what had happened. How such an amazing birth could suddenly turn so tragic.

Within a few hours we were visited in the maternity ward by the neonatologist looking after Grace. He explained what had happened to Grace at birth (birth asphyxia due to shoulder dystocia), that as a result most of her system had shut down (including kidneys, gut, heart and lungs), and that she had started having seizures as well. She was diagnosed with severe hypoxic ischaemic encephalopathy (HIE III), and initial blood results also indicated that she had Group B Streptococcus sepsis. We were told that Grace was very sick and that they were very concerned about her. She was at this point given a guarded prognosis, and we were told that we would know very little about her condition and long-term prognosis for at least 2-3 days and that a multitude of tests and scans were being ordered (including further blood counts, continual Brainz monitoring, cranial ultrasound, lumbar puncture, EEG and MRI).

Grace continued to be ventilated for 43 hours and was placed on a cooling mat for 72 hours. Although her seizures continued they decreased in intensity and frequency and by day 3 had almost abated. Grace’s organs slowly recovered and began to function normally as well, however her neurological assessments showed that she was not responding appropriately to a number of newborn tests and her long term outcome was suspect.

For these first 3 days we were only allowed to rest our hand on Grace. She was having seizures whenever she was stimulated and so, we were unable to stroke her or even hold her as she was not stable enough.

After she was extubated Grace was fitted with a naso-gastric tube and was slowly commenced on expressed colostrum. I faced another heartbreaking decision that night as I was simply unable to express enough colostrum to maintain her 3 hourly feed requirements and so agreed for Grace to be given formula. For me this felt like I had failed her, I was unable to provide her with the amount of sustenance she needed and felt as if I was letting her down (again). On day 4 Grace was slowly warmed up and we were finally able to start to gently stroke her. She was also moved from critical care to the general intensive care pod.

On day 5 I was finally able to hold her – something which I had been aching for, and which finally helped me to feel like I was actually Grace’s mum, my sliver of hope that everything was going to turn out okay. When they first laid Grace in my arms I cried, even though she was still covered in tubes and wires, she was the most amazing little person that I had ever met. I fell completely in love with her and knew that I would do anything in my power to keep her safe (something that I’d been feeling I’d failed her on by not being able to bring her into the world safely). Grace’s response to being held was incredible. She was intently staring into my eyes and coping my facial expressions, smiling and responsive – it was incredible and gave me so much faith that we would get through this). That afternoon Grace had her MRI scan (the results of which weren’t available for a couple of days).

First cuddle with mum, aged 5 days:

On day 6 Grace had her EEG (which came back effectively normal) and it was finally Adam’s turn to hold Grace, and the first day that we attempted to breastfeed. Grace struggled with this for some time, but I was stubborn and felt that I would success in this even if it killed me. Due to sucking reflex issues, Grace was eventually placed onto a nipple shield, this ended up being the only was she would breastfeed, and after trying for months to feed without, we continued to feed with it until Grace weaned herself off the breast at 9 ½ months of age (not bad for a bub who many thought would never successfully breastfeed).

After 6 days on the maternity ward, surrounded by the sounds of new mothers and their babies (the words devastated, jealous, angry, shattered all describe how this felt) I was discharged from the hospital. We stayed with Grace until the evening, and then kissed her goodnight. Leaving Grace each night to return to the ward had been hard enough for me, especially as I was surrounded by mums who actually had their bubs with them, but leaving her behind in the hospital when I was discharged was heart-wrenching. I cried all the way home and it was so devastating walking into our house, seeing everything set up and ready for Grace. No mother should ever have to endure coming home without her baby. What followed was daily visits to the hospital to be with Grace, where we sat pretty much all day, holding her, stroking her, talking to her, and the never-ending milk expressing for her feeds when I was not at the hospital.

On day 7 we were given the results of Grace’s MRI, the great news was that it appeared that her brain stem has been saved any damage, however she did show damage to her parietal and occipital lobes. We discussed what his could mean for her future, and were told that she may have some vision problems, as well as a range of learning disabilities or problems in the future. We were told though that a baby’s brain is very ‘plastic’ and able to overcome remarkable hurdles, and that only time would tell what her long-term outlook was going to be. The best advise we were given was to just love her, continue to interact with her and never give up hope. To this day, that is the most treasured advice that I had been given about Grace.

After discussions with her medical staff it was agreed that I was finally able to “room-in” with Grace on day 12 (she was still on medication and monitoring, requiring 3-4 hourly visits back down to the NICU, but it was agreed that it would be more beneficial for Grace to be with me as much as possible). And so, we spent the next 5 days together in hospital, getting to know each other, snuggling, catching up on all the intimacy we’d so far missed out on. It was also a turning point for me as I finally began to feel confident in myself as a mother, confident that I could trust my instinct about my baby, and in control of the situation we were in.

Unfortunately, it was also an immensely lonely time, as Adam was back at work and not able to stay with us on the ward. I missed him terribly, and it was really difficult to be separated from him, even though he spent as much time as he could with us before going home. Not having him there was very difficult as there were so many little moments I wanted to share with him (Grace smiling, cooing for first time, comments from medical staff about her progress). But, on day 17 we finally got the news that we would be able to take Grace home, although she still required medication for the GBS infection. The moment had arrived and we were finally going to be a family, all together at last.

After coming home from hospital, Grace had a number of follow up assessments at the hospital to monitor her progress. Over time, it started to become apparent that the little girl everyone was very concerned about was doing far better than anticipated or expected. Here she is aged four months:

Over the course of Grace’s first year, her assessments were progressively reduced, she was meeting all age-appropriate milestones (and some ahead of her age) and her long-term outlook began to look for and more positive. At 12 months Grace was formally discharged from the hospital’s follow-up clinic. We were told that Grace would most likely continue to progress appropriately, that if she has any learning difficulties down the track, they expect that it will be minimal - and what went from being a 50% chance of severe physical and intellectual disability after she was born has now gone down to zero.

Playtime for one totally healthy, happy girl:

Taking her first steps, just eight days after her first birthday:

Today Grace is bright, happy and very adventurous, a little girl who is growing and changing every day, and who continues to amaze us with the journey she’s undertaken to get to this point. So, although Grace is doing brilliantly there is still an emotional fall-out from her birth, which (unless you have experienced the uncertainly and heart-break associated with having a newborn in NICU) is hard to understand.

I still grieve for the baby whose face I never saw, who I was never able to hold after the birth or welcome into the world. As new parents, we took for granted that we would have a healthy baby and the scars from her birth and the challenges we faced have had an incredible impact on us. There have been moments of anger, of asking why, moments where we have looked for someone or something to blame, moments when we have wondered what we did wrong, all the normal and expected emotions to go through after something like this….but we have worked through these, have learned and accepted the why’s and what if’s. What is left now is a more positive reflection, although one that will most likely always be filled with grief.

Over the past year we have begun to appreciate that our journey with Grace has also given us a great deal. We are closer and stronger as a couple, we have shared a tragic and devastating start to parenthood together, we feel blessed everyday that our little girl not only survived but came through this so brilliantly. We have also learnt the very difficult lesson that, as parents, we can never completely protect our children from everything in the world, that some things are beyond our control.

Above all we have learnt to be grateful for every moment we have with our child. Grace taught us that love and faith are incredible gifts and that dreams can come true, prayers get answered and miracles do happen.

Grace walking:

A very special first birthday celebration:

Miscellany

2010-01-21T06:41:00.000-08:00

I've heard back today from three different sets of medical professionals we've been dealing with in the past year regarding our next (and, we hope, last) appointments. As always seems to happen, all three appointments are going to take place within a couple of days.

On the morning of Monday 15th February, we'll be seeing the local phsyiotherapy centre for an assessment of whether Sophie still needs treatment (and really, I'm going to have to find a hat and eat it if the answer is yes- I can't imagine them finding a single thing they still need to look at; in fact, I'm pretty sure they'll find she's raced way ahead of target in her gross motor development).

In the afternoon on the same day, we'll be seeing the neurologist who has been following up with us since the day Sophie was born. Within the family we have differing opinions on this doctor- we initially appreciated his honesty in the NICU, where he was the only person who would routinely give us a straight answer to any question we asked. But later down the line, we became a bit frustrated with his approach, as he was very unwilling to acknowledge any progress at all- even as Sophie was crawling over his desk at age 8 months, trying to get at his tie (she loves ties) he was still telling us it was too early for positivity- and within a week, a whole medical team had happily declared her problem-free, like we thought. I'm kind of bubbling over with "I told you so" comments I want to make- especially since this kind of I told you so must be the kind of thing he looks forward to, because it means he has a totally healthy patient.

Two days later, we'll be seeing the Early Intervention Team for the first half of Sophie's developmental assessment. We'll be meeting with the physiotherapist, occupational therapist and speech therapist, who will look at her progress since the last assessment in July, and will rate her abilities against those expected of a child her age. We're sure she's going to blitz it. Assuming that all goes well, we'll see the specialist paediatrician in March, and at that point she should be able to discharge us from the program. Fingers crossed.

Of course, if any of them highlight an actual problem that needs continued attention, it's going to be a very bad moment indeed. I still wonder about her speech skills sometimes. I'd love to just turn my back on the whole thing and leave it all be, but I have to remind myself that we're still way ahead of our best-case scenario no matter what happens.

I shall conclude this post with a few recent Sophie pics to make up for all the yammering I've done in the last few posts.

Sophie shows off her big blue eyes:

Squirting herself in the face with the sprinkler- great game:

Helping dad wash the car:

She doesn't just watch, of course- she's a hard worker:

The attack of Chompy the Crocodile Hand Puppet:

Chompy gets closer:

Best. Game. Ever.

Blogger's Choice Awards 2010

2010-01-19T16:29:00.001-08:00

I've nominated Sophie's Journey for two Blogger's Choice Awards 2010- Best Parenting Blog, and Best Health Blog. This might smack of hubris, but after a lot of debate I decided it was worthwhile because it's going to increase traffic to the blog even more, which is going to enable more and more people to find the resources they need here.

And it may develop, soon, into a way I can raise a little money to support the people who supported Sophie- in particular the Royal Flying Doctor Service and the Princess Margaret Hospital Foundation.

If you've read and enjoyed Sophie's story, please consider following one or both of the links below and sending a vote our way. You do have to register, I think, but it's quick, easy and free, and we'd really appreciate your support.

Best Parenting Blog- Sophie's Journey
Best Health Blog- Sophie's Journey

Your story

2010-01-19T06:15:00.000-08:00

A couple of months ago Sophie's blog received around six hits a day, most of those from family and friends. Now she's averaging around 24 hits a day, with a peak of 47 views yesterday.

This is because the link to her blog is appearing in more and more places, and she's continuing to rise up the search ranks. As this happens, more and more people who need to hear Sophie's story are finding it.

But Sophie's story is just one, and of course it's hard to get an idea from this blog of whether her outcomes are completely unique, or what other stories are out there, including those from families of kids who are living with cerebral palsy and epilepsy as a result of their HIE. I'm becoming a bit of a one woman connection here as I'm contacted by more and more families of kids with HIE, and every time I hear from someone new I'm adding to my mental list of stories.

Not that it helps you guys, unless you're psychic.

Therefore, starting soon, I'm going to be posting the birth stories, prognosis and actual outcomes of a whole lot of other HIE kids here. I've already signed up my first guest mum. Your story could (no, WILL) help someone else who's going through the process of searching for information about HIE.

So, if you would be willing to feature your story here, no matter what your HIE outcome, please drop me a line at clairesgregory@gmail.com and let me know. You can either write your own story, or I can write it for you. Stories will be one post, with pictures if you like, and I'll have a permanent link to each one in the sidebar.

All put together in one place which gets a lot of traffic, this should become a vital resource for new families dealing with HIE.

This dairy is closing down...

2010-01-17T06:20:00.000-08:00

Now that Sophie is sleeping through the night (instead of breastfeeding eight times between dusk and dawn), plus attending a full 7am to 6pm day of daycare two days a week (where she happily takes two big bottles a day), the emphasis on breastfeeding has gradually been slipping away.

Over the last few days I've noticed that I only get one let-down every feed instead of the usual five or six. I've also noticed, because it's hard not to, that Sophie has started biting me rather consistently with her seven shiny choppers. OUCH.

That, plus a shrinking cup-size, tells me that I'm running out of milk. Over the last couple of weeks, I've made it to the end of my work days without so much as a rock-hard boob in sight. It's clear that production is way down. Waaaay down. In fact, I'm not sure she's getting more than a couple of mouthfuls anymore. And she's really, really mad about it.

This kid is so attached to her boobs. Against my original intentions, I ended up demand breastfeeding her, to the point where she'd happily feed more than twenty times a night. She used her breastfeeding for food and for general comfort- if the slightest thing upset her, she'd be right there wanting to feed.

And you know what? Notwithstanding the annoyance of a kid who knows how to fish my boobs out of my shirt all by herself, no matter where or when, I've really loved breastfeeding her. I'm going to miss it so much. There is just about nothing on earth better than snuggling up to a warm little bundle, squeezing her tight, smelling her sweet baby smell, and watching her get all the nourishment and love she needs right in one place. It occurred to me the other day that this complete intoxication isn't one-directional, either- the flood of love I feel for her (which is, of course, biologically as well as emotionally driven) is exactly what she feels for me- nobody else smells the same, nobody else cuddles just right, and nobody else can make her feel so completely contented.

So I'm sad that we're coming to the end, but at the same time I'm more than ready. I was ready months ago, but I couldn't get her to sleep without the boob. Now that I can, it's time.

I still don't know how to go about it, totally, but I think I'm just going to have to cut her off, cold turkey, possibly from as early as Wednesday. There will indeed be a large number of screaming, arm flailing, floor punching tantrums; I will no doubt get slapped in the face more than once (her latest tantrum trick). But I know that after a few days of that, or at the absolute most a couple of weeks, we'll be good.

Now I just have to figure out how to get ordinary milk and/ or formula into her at home, when she doesn't take a bottle or a cup all that well at the moment. But we'll get there.

Consolidation

2010-01-17T05:37:00.000-08:00

If you're a long-time reader of this blog, you'll know that sleep with Sophie has gone up and down like a rollercoaster since she was born, from easy as pie when she was brand new to nightmarish over the last eight months.

But I'm cautiously optimistic in saying that I think... I think... we really have cracked it this time, once and for all.

I explained all the background to our sleep solutions in the last post, and mentioned what we'd done to get her sleeping in her cot. Since then, and in fact since the very first night Paul got her to sleep in her cot, she's woken no more than once a night (usually not at all) and even then she goes back to sleep in under a minute.

Here is *exactly* what we've been doing, a bedtime routine which is adapted from the Dream Baby Guide by Sheyne Rowley:

After dinner and a bath (nothing special, nothing set in stone- we still don't have a routine that happens at the same time each day) it's time for bed. We wait until we can see that she's getting tired- rubbing eyes and that sort of thing.

Sophie gets dressed in her pyjamas and goes around the house saying goodnight to mum or dad (whoever's not doing bedtime), plus the pets, plus any visitors, etc. She waves goodnight to everyone then get taken into her room, which is lit with a dim-ish lamp.

I sit down on the couch in her room and read two stories, making sure she sits still on my knee and doesn't grab the book herself (as per the Sheyne Rowley behaviour management guide).

Then it's time to turn on the white noise on her i-Pod dock (again, I got the white noise CD from the Australian Baby Whisperer site), turn out the light, and sit back down for a little milk. While she's having her milk, I'm using my super-consistent language cues to tell her what's coming next:

Soon it'll be time to finish your milk and lie down in your cot for a nice sleep (5 mins warning)
Almost time to finish your milk and lie down in your cot for a nice sleep (2 minutes warning)
Last one, then it's time to finish your milk and lie down in your cot for a nice sleep (1 min warning)
Okay, time to finish your milk and lie down in your cot for a nice sleep.

We stand up, and I put her over my shoulder and pat her back while rocking from side to side. I sing "Twinkle Twinkle Little Star" once, and then I start my bedtime cues (at this point, she's always relaxed and floppy with her head on my shoulder):

Shh, shh, shh, shh- It's time for bed
Shh, shh, shh, shh- Mummy and Daddy love you
Shh, shh, shh, shh- Time for night night

Repeat each of those once more, still patting and swaying.

Then I say, "Time to lie down in your cot and have a nice sleep; lie still for mummy."

I put her down in the cot, and what usually happens now is, she lets out one little "Eh!" and falls asleep. Immediately. In under ten seconds. I'm not kidding. That's the daytime sleeps, anyway.

At night, we're dealing with a slightly different set of behaviours- she tends to get super happy about being in her cot with her buddy Sylvester the (stuffed) Cat, so she'll often roll around and chat chat chat to herself. While doing this, she does try to get up, which is why Sheyne Rowley recommends the Safe-T-Sleep wrap (which straps them down onto the bed). That didn't work so well for us, because Sophie likes to change positions in her sleep and actually wakes up sooner if she can't roll over. So instead, to make sure she understands that lie down and go to sleep means just that, I keep one hand on her tummy (through the bars) and hold her down. She doesn't try to get up when my hand is on her tummy; only if I take it off, at which point I'll lie her back down and repeat, "Lie still for mummy".

I don't have to pat her tummy anymore (unless she's really cranky), and lately I haven't even needed to do the tummy hold- it only took a couple of days of physically reinforcing what I was asking her to do before she understood.

On the increasingly rare occasions that she wakes up during the night (last night she was in bed by 8:30pm and woke up at 4:45am), I just go in, lie her back down, and say my "Shh, shh" cues again twice. Last night she went back to sleep instantly, in less than a minute, and didn't wake up again until 7:30am.

So, there you have it. That's our bedtime routine. As soon as we start reading the books now, Sophie starts yawning, and that's exactly what you want- a cue for them to start feeling sleepy. By the time we've finished the routine, she knows exactly what's going to happen next, and she actually looks forward to it. I never thought I'd see the day (nor the day where she asked to be put in her high chair for lunch, which she now does too). She also took me to her room for a nappy change a couple of days ago- she now has a really clear idea of all the steps it takes to do the major activities in her day, and it makes her a happier and more confident and cooperative little person.

It's awesome :)

Sleep solutions

2010-01-03T02:17:00.000-08:00

I've noticed a huge increase in the number of hits this blog is receiving from people Googling "Pantley Pull Off". I've written two previous posts on the topic, and you can find those here and here.

I'm going to assume that people who are searching for information on the PPO are, like me, looking for ways to change the habits of a breastfed baby who needs the boob to sleep at night.

Well, I started to write this post about a week ago, and what follows is very different from what was here originally. The reason? After 14 months of desperate struggle to get my daughter a) sleeping without needing the boob and b) back in her own cot instead of in my bed, we've suddenly and unexpectedly had complete success at both things. And we weren't even trying that hard- we were actually just making preparations for a bigger and more intensive sleep program to commence soon, and in the process somehow got Sophie sleeping in her own bed, and through the night without waking.

It's something of a miracle.

Until this night last week, Sophie was still breastfeeding to sleep most nights and most naps. The only times she didn't breastfeed to sleep were a) when she was at daycare, where they rocked her to sleep in a pram; b) in the car or in the pram; or c) when her dad took her to bed instead of me. She was still sleeping in our bed, she still woke up at least twice a night (this was a HUGE improvement made only in the previous three weeks- before that she was still waking 6-8 times a night).

Here she is asleep in the pram just a week and a bit ago:

This situation arose when she was 6 months of age and we moved back to Perth from the country. Sophie had been sleeping through the night for a few weeks and I was pretty happy. But then I stayed at my mum's place for three weeks during the move, and Sophie just couldn't get the hang of her portable cot. So, she slept with me every night instead, breastfeeding to sleep, and it was all downhill from there.

I went through dozens of sleep books, I went to sleep school at Ngala, I attempted crying it out, and things were still not as I wanted them.

But Sophie has now gone to sleep in her own cot in her own room every night for the last seven nights, and for her midday naps for the last five days. She's lasted between 6 and 11 hours at night, and during daytime naps she's woken up after half an hour but gone back to sleep for another hour and a half every time. She's falling asleep with pats on the tummy instead of needing the boob. Sure, it's still a crutch- but in my opinion, one that should be much easier to wean her off than breastfeeding to sleep.

So, after some eight months of trying EVERYTHING, what has changed? How have we managed this absolute miracle-in-progress?

The factors that have changed things for us are:

1. Daycare.

Daycare all the way. Sophie started in November last year, goes for two days a week, and though she screamed the place down every morning for the first month, she's suddenly decided she loves it there. She's drinking two 240mL bottles a day (where the most she'd previously taken, ever, was 110mL), and while she originally wouldn't sleep unless she was rocked in a pram, she now puts herself to sleep in a cot quite happily. In fact, on Tuesday, one of her carers told me that she sat next to the cot and tried to pat Sophie's tummy while she went to sleep, and Sophie shoved her hand away and waved "bye-bye" before closing her eyes and nodding off completely unassisted.

This was something of a stunning revelation to me, because until that moment I thought she was still sleeping in her pram at daycare. But no. That's when it really dawned on me how much I've been underestimating my daughter's adaptability, and how much I've allowed my fear of letting her cry (ever) rule our lives.

I hadn't even tried to put her in her cot for a nap in the last eight months because she had previously hated it and I thought she still would. But I was wrong.

2. Food balance.

Because she was breastfeeding some eight times a night, Sophie was waking up in the morning already full. She wouldn't eat solids for breakfast. But milk doesn't fill the tummy the same way, so within an hour or two she was hungry again, and would turn to the breast for more milk. By lunchtime, she was already full of milk again. By afternoon tea, she was hungry because she hadn't eaten enough solids at lunch. And so the cycle went on, day and night.

Also, as soon as she learned to feed herself finger food at about seven months, she didn't want anything to do with the spoon. Also there's apparently a strong tendency for babies who have been ventilated/ tube fed to have an aversion to spoon feeding because they have bad associations with things in their mouths.

Anyway! We were tearing our hair out- at 11 months of age, we were lucky if we could force feed her a third of a jar of baby food a day, and the rest of her food intake was made up of fruit pieces and breastmilk. Sophie is growing rapidly- she's always been around the 95th percentile for height- and she had hit 10kg. But within a few weeks of walking, therefore using more energy, she started to lose weight, and fast- she dropped back to 9kg, and we were getting a bit desperate.

The solution- the DREAM BABY GUIDE, by Sheyne Rowley. The book looks at all areas of baby behaviour and teaches parents how to lead their babies instead of vice versa. One of the real wake-up calls for me was where the book asks you to consider how often you ask your baby a question instead of giving them the direction they need.

I realised I do that all the time. I was asking her, "Shall we have lunch?", or, "What do you think, time for a nappy change?", or even, "Time to sit in your pram now, okay?" It was my natural inclination, to include her in conversation the way I would with an adult. But by talking to her like that, I was putting the responsibility on her tiny shoulders, when what she really needs at this age is for me to tell her what's going to happen next.

So, we've changed our language. Now we have predictable language cues for things like feeding and nappy changes. Five minutes before lunchtime, we say "Soon it's going to be time for lunch. Yummy lasagne! Mmm, mmm." (Lots of enthusiasm and positivity required!). One minute before lunchtime, we say, "Almost time for lunch, Sophie. Time to pack away and get ready for yummy lunch." When we're ready, we say, "Time to eat lunch! Here's your high chair, time to sit in your high chair and eat your yummy lasagne."

While we're feeding her, we stay bright, happy, and entertain her with a DVD or by playing with food-proof toys. She has her own spoon, and she feeds me with that while I feed her with my spoon. We're consistent about when and where we do our eating, and we do everything the same way every time. And now she happily eats a big bowl of cereal with milk and pureed fruit in the morning; fruit and water for morning tea; a big bowl of meat, vegetable and pasta/ rice for lunch, plus a tub of yoghurt, PLUS more fruit; more fruit or a biscuit or some crackers for afternoon tea; and a bowl of vegetable and pasta/ rice for dinner, followed by yoghurt/ sorbet/ fruit).

I know I'm rambling on and on about this, but I can't over-emphasise how important eating is to sleep. Now that we've corrected the balance of her food intake, she doesn't need to wake up to eat during the night. Now we know that all her night-waking is related to comfort associations, and we're able to deal with that separately.

3. Dad power

I've tried countless times over the last eight months to fix the sleep problem, to no avail. Sleep was my territory, because poor Paul has to go to work in the morning, and it matters whether or not he's a zombie. But now that I've gone back to work, it matters to me, too.

So, Paul stepped up at the start of last week and started putting Sophie to bed himself. At first he was just taking her into her room for an hour of fun playing in her cot, which paid instant dividends. By spending time in her cot with lots of lovely toys, with Paul sitting nearby so she didn't fear that he'd disappear, she regained her trust of that environment. That, by the way, was the most we hoped to achieve with the nightly play sessions, in preparation for undertaking the sleep repair routine in the DREAM BABY GUIDE (which was taking us forever to implement because it's so incredibly detailed and you have to get it right- but I'm absolutely certain that it would have worked well if we'd needed to use it).

After just a couple of nights of that, Paul waited til she was ready to crash, then cuddled her until she fell asleep. He then put her down in the cot asleep- and amazingly, she stayed asleep for six hours the first time.

This isn't fixing the problem completely, of course- it's tricking her into going to sleep instead of getting her to do it herself.

But it was an important stepping stone. The next night, instead of cuddling her, he put her down in the cot and patted her tummy through the bars instead. Lo and behold, just like at daycare, she went to sleep without any grizzling at all.

Same the next three nights.

The big problem was, when she woke up at 2:30 or 4:30 in the morning and cried out for Paul to come pat her tummy again, I would come in- and she would immediately expect to be breastfed. I couldn't get her to go to sleep in the cot myself because she associates me with only one way of sleeping.

But a few days ago I had a big success and got her to sleep in her cot for two hours for her daytime nap. She's never done that in her whole life, so it was a huge moment. She was exhausted when I put her down, and I gave her a bottle of milk to drink, which settled her more. She quite happily lay down for me and stayed there. But when she realised I was leaving her there, tummy patting notwithstanding, she got quite angry and did have a good long cry about it.

Again, I have the DREAM BABY GUIDE to thank for helping me understand that frustrated crying is okay and even important in helping them to cope with disappointment in their lives. Sure enough, within a couple of minutes (and hell, it always feels longer when they're howling) she settled down and went straight to sleep.

That night, after a very busy day with only one nap instead of her usual two, she went to sleep in the car at about 7:45 when we were coming home from my mother's house. Paul transferred her from the car straight to her cot, and she didn't wake up. And she didn't wake up at all until 6am the next morning.

Wow!

The last two nights she's gone to bed a little later, she's been a bit trickier to get to sleep (she now thinks it's a funny game, going to bed, and likes to crawl around in her cot for a long time before deciding it's not fun anymore, and having a good cry instead), but she's still slept straight through to 5am or after. Today she slept for a whole hour and 45 minutes in her cot at naptime without waking up once.

I know if your baby is sleeping like Sophie was, you'll understand how freaking incredible this all is.

Anyway, the three things above were the biggest factors in our sleep success (FINALLY!). But there are other little things we know we need to add to make sure she can go to sleep without any help from us, and to make sure things stay this good in the long term.

Things like a consistent daytime routine, followed by a consistent bedtime routine. Like having playtime in her cot without us in the room. Like us not picking her up whenever she asks, to show her that it's okay to not be held by your parents whenever you like. Like doing a role-play of putting a teddy to bed to show her exactly what behaviour we expect from her. These are all things from the DREAM BABY GUIDE which we haven't yet put in place, but we still acknowledge how important they are.

In my desperate quest for better sleep, I've used the following books/ resources over the last year, and here I'll make comment on their usefulness to us. Please bear in mind that this is just us- we're sensitive types who took a battering after having our firstborn in intensive care for a month, and we've found it incredibly hard to push her toward better sleep if it involves any crying at all. But this is not necessarily a realistic wish, so many of the resources we found lacking may well work for you.

Click on the title of each resource to go to the website of each author/ book/ etc, or if not available to see the title as listed on Amazon.

1. SAVE OUR SLEEP, by Tizzie Hall (Australian)

A book which emphasises putting your child on a strict routine from day one, which means they'll know when they're expected to go to sleep from a very early age, and will learn good habits. The principle is good, but really- there was absolutely no way we could have Sophie on such a strict routine when we had to breastfeed hourly to build my milk supply. Ironically, this book would probably work really well for us now- and I think it is applicable to older babies/ toddlers too.

2. THE HAPPIEST BABY ON THE BLOCK (DVD- also available as a book), by Harvey Karp

Brilliant. So good. A dear friend in the States sent me this DVD, and when Sophie was about seven or eight weeks old she went through a crazy period of crying sessions in the evening (as many babies do). I didn't know what to do- and then I remembered the DVD, watched it- and that night, Sophie slept through 12 hours for the first time ever.

This process is relatively simple- it has you do five simple physical things to get your baby to stop crying and go to sleep. First, you swaddle them tightly. Then you tip them on their side on your lap. Then you lean down and go, "SHHHHHH" in their ear as loud as you can (sounds crazy; works a treat). You also stick in a dummy if they take one, and as a fifth step you jiggle them from side to side. You do all five of those things at once, and I'm serious- it works instantly 99% of the time.

The single only problem is that this process was no longer very useful after Sophie was about 14 weeks old. At that stage she was able to worm her way out of her swaddling wrap, which I took as a sign that she didn't like it. But as I've now read, you can actually swaddle a baby up to about 15 months of age (there's even a manufacturer of swaddling wraps for older babies here in Australia- I bought one recently and it's beautiful quality, though ironically it won't be used now until the next baby comes along). So, perhaps this technique has a slightly longer life- but still. If your baby is under 14 weeks of age, this will keep them happy, no questions asked.

And as a preview, I present to you a YouTube video of a dad employing the five techniques to settle his baby, here.

And I add, I've just noticed that there's also a HAPPIEST TODDLER ON THE BLOCK book and DVD available. Hmm. Hmm! After the excellence of the baby one, I rather think I might track that down. I'll let you know if I do.

3. THE NO-CRY SLEEP SOLUTION and THE NO-CRY NAP SOLUTION, by Elizabeth Pantley

Both fantastic books, crammed full of ideas to fix sleep troubles. I love both of these books, and I feel like we would have had success using the techniques if we'd been a bit more organised in applying them. My favourite thing about it, besides the fact that it's designed to help you solve sleep problems without leaving your child to cry, is that it acknowledges that no two babies are alike, and it therefore lets you choose your own program by bringing together a whole host of ideas which you can take or leave as you like.

4. NGALA (Western Australia only)

This is the government-endorsed sleep training hospital in Perth, Western Australia, and to be perfectly frank I wouldn't recommend it to my worst enemy.

Having said that, I know plenty of people who have come out of their Ngala experience feeling positive, and with babies all fixed. But I think that our particular circumstances just didn't fit with the philosophy, or perhaps just with the nurse we had on the day. You can read my post about our Ngala experience here.

At the time, when we were desperate, the only thing it did for us was make the situation a whole lot worse. Bad, bad, bad.

5. SLEEP SENSE, by Dana Obleman

This is a website, which you can find here if you're interested. I paid a wad of money to be sent the online book, which promised all kinds of simple "secrets" that would miraculously fix Sophie's sleep. In reality, though, it struck me as just another manual that advocates crying. Not only was it a waste of money, since I don't want to do controlled crying and I felt like I'd been tricked into thinking this was different (when it wasn't), but I'm still getting annoying mass-generated emails from my buddy Dana on all kinds of different topics a whole year later.

Again, a disclaimer- if you're at the point where you feel you need to give controlled crying a go (I was; that's why I went to Ngala, so someone could show me how in person) then this might well work for you. One excellent thing it did have was an online sleep diary to record and analyse your child's sleep patterns. I did Google it before I bought it, and if you do the same you'll see that I'm in a minority here when it comes to being dissatisfied- most people seem to get good results from this program. Just FYI.

6. WONDER WEEKS, by Hetty Vanderijt and Frans Plooij

I've mentioned the Wonder Weeks book before. It doesn't have any sleep solutions in it, but what it does do is tell you when a wonder week is due- at which time you're likely to have hellish sleep disruptions for a couple of weeks (called "sleep regressions"- you can Google that, too). So, just as you're beginning to give up hope and thinking you've lost the battle, you might find that your baby is just about to return to normal. The Wonder Weeks website has a chart showing you when the "stormy" sleepless periods are due, and now we're at the end of the Wonder Weeks year, I can tell you that Sophie hit every single stormy period TO THE DAY it was due, pretty much.

7. DREAM BABY GUIDE, by Sheyne Rowley

I can't rave enough about this 740-page monster of a book from the so-called Australian Baby Whisperer. Despite the length, it's easy to read, and written in such a way that you absolutely know the author understands what's going on in your head as well as in your baby's. She knows what she's talking about, and better than that- it works.

I was sceptical at first that it could be so easy to change bad habits. The nappy changes were the first thing we tackled. We had reached a point where pinning Sophie down for a nappy change was just about a two person job. We hadn't used her change table for maybe five months because she just rolled over so much. She'd crawl off halfway through being changed. She'd scream and kick and hit. It was a complete and utter nightmare- and I know many, many others have the same problem.

Well, it turns out it was just a symptom of a bigger problem- that being our communication with her, as mentioned earlier. We were asking her questions instead of telling her what would happen next, so she thought she was in control- except we would then randomly whisk her off, pin her down and change her nappy when she wasn't quite ready.

We changed our language (as I demonstrated above with the eating example), and immediately- I mean, literally within one nappy change- she was lying completely still, completely happy and cheerful, and stayed that way until I was done. And she's been like that every single nappy change since (and we're talking about three months now). Here she is on the change table:

As with the eating, it took one stressful session of enforcing boundaries- in this case, showing her what I meant by "lie down, lie still for mummy" by holding her down when she tried to get up- before she got what I was asking her and happily complied. She didn't want to disobey me for the heck of it- she just didn't understand what I was asking her to do.

The DREAM BABY GUIDE helps you fix all these little problems in the lead up to the big one- sleep. Like I say, it's a rigorous program with a foundation in helping your baby understand the things you're asking them to do at sleep time- lie down, wait for mummy/ daddy, go to sleep, stay in your cot, wait to be picked up in the morning. Having reached my seventh sleep solution, I can tell you that this, the last one I found, is the one I wish I'd had from day one. If I'd had it, I know we wouldn't have had any of these problems. It's just a really solid foundation in communicating with your child, and I know we're going to be better parents in the long-term for having read it.

If you're going to go out today and buy one sleep book, make it the DREAM BABY GUIDE by Sheyne Rowley. Be prepared for some extensive reading and preparation- but know that once you've done all the groundwork, success is the closest thing you'll find to instant.

I bought the ebook of the DREAM BABY GUIDE here, and I also bought the white noise CD off the website which is linked in the above title.

Sophie this week- a happy, well-rested baby, all ready for mischief!

People who helped us: Princess Margaret Hospital

2009-12-29T05:28:00.000-08:00

I've just been reading the Neonatal chapter of a new book about Perth's Princess Margaret Hospital, titled SAFE IN OUR HANDS, by David Webb and David Warren (recently released to mark the hospital's centenary). If you've had a child in Princess Margaret at any time, or if you just want to support the hospital and learn more about the history of paediatric care in Western Australia, the book is available in a few places (we found our copy at Big W) and the proceeds go to the Princess Margaret Hospital Foundation.

Reading the neonatal chapter made me think of a few things about our experience at Princess Margaret- in particular how wonderful the staff were, and how much of a huge difference they made to us.

They are all incredibly special people, but this quote from the head of the department, Dr. Ronnie Hagan (who we met several times) really shows how care for the parents is acknowledged as being equally important as care for the baby.

"There's a Himalaya of anxiety sitting outside the baby's cot- a mountain you call Mum and a mountain you call Dad. You have to help parents cope with what is a horrendous experience for them," he says.

"You start with the simple things you do in any relationship- eye contact. You know their names and, above all, you know the child's name. That's very important."

(Safe in Our Hands, page 21)

This reminded me of my time in the NICU because I remember vividly waiting every day for Dr. Hagan or the registrars on duty to come by on their morning rounds. They would reach Sophie's crib at about 10am each day, and every day I would be waiting for them with questions and more questions. If you hadn't noticed, I'm a research-oriented person, and I hate not knowing the answers to anything. Living in the hospital as we were, I didn't have access to the Internet to research what was happening to Sophie, so I was wholly reliant on the doctors. If only you could see the beating I've given Google in the last year- I search, search, search, all the time, until I fully understand. The poor old doctors of Ward 6B suffered the same thing for three weeks.

My most desperate moment came after Sophie had come off oxygen at 7 days of age, only to go back on at ten days of age, seemingly with no intent of ever coming back off again. We had been away from home, marooned at the hospital 500km away, and time had never moved slower. Ever. The hospital in Albany wouldn't accept Sophie back until she was off oxygen, so we were stranded. And all I could think was, even when she does come off it (WHEN??), how do I know she won't just have to go straight back on again a couple of days later? How will I know she's okay if I take her home without her pulse oximeter machine? How will I keep her healthy and safe without all of this machinery?

I cornered Dr. Hagan one morning and asked him that question. He's from Northern Ireland (like Paul), and has a lovely, gentle, but very authoritative manner. He's a man of his word- and as he says in the quote above, even though Princess Margaret sees about 700 babies through the NICU each year, he remembers every child's name and every parent's. He weathered a series of questions that degenerated into toddler-like "But...why? Why? Why?" And he told me that when Sophie was four weeks old, she'd be twice the age she was right then, and pointed out that it would take me another 27 years to grow that much. That's why her oxygen was going to be all right- because in baby time, progress is made in days, but days are worth more time than you can imagine.

I trusted Dr. Hagan and all of his staff implicitly, and they brought us all through that impossible time so well.

The other person I'll never forget is the first nurse who let us hold Sophie when she was about three days old. On the first day I saw her (when she was two days old) I couldn't stop stroking her little leg and touching her tiny fingers- I was so amazed to see that they were a perfect amalgam of Paul's fingertips, and the rest of my fingers. But we had one less-than-ideal nurse who on that first night, after I'd gotten out of a hospital bed one day after a caesarian, climbed up the steps of a Royal Flying Doctors plane unassisted, and made it 500km to be near my baby, abruptly told me to stop touching her, because doing so was causing her stress.

Well, I went back to my own hospital in my wheelchair after that little moment, and had a teeny tiny breakdown in my cold, empty room, listening to all the mothers in the rooms around me comfort their crying newborns.

But the next night when I was able to go back, we had a wonderful nurse on duty. As soon as she saw us sitting next to Sophie's cooling table, she came over and asked if we'd like to hold our baby girl. At that stage I hadn't ever held her before. It seemed too good to be true, but no- nothing was too much work for this nurse. She detached and reattached countless leads, shifted and moved monitors, and managed to juggle my comatose baby off her table (still on her pillow) and onto my lap for my first cuddle. Here we are having that perfect moment:

And here's Paul getting his turn- he even got a blue-eyed squint out of her:

You know I'm crying all over again writing this, right? Because it was the first time I ever held her- the very first- and it meant more to me than anything. And the help this nurse gave us, the no-trouble attitude, her happiness to be able to bring us that joy- she changed our whole perspective in that one moment. We went from hopeless and sad to positive again, and we started to believe that maybe, just maybe, we'd be okay, no matter how Sophie was in the long-term. As long as we had her in our arms, we could handle anything.

Coming up to Christmas this year, I was thinking all over again about how much the staff of Princess Margaret did for us, and how much I wanted to do something for them. After much consideration and observation of the snacking habits of nurses and doctors (thanks to best-aunt Em), I decided to make up a platter of Christmas treats to take in for all the staff who were working the holidays this year, taking time away from their families to care for sick babies and *their* families. It didn't seem like much, but it was something, at least.

I wasn't sure whether they'd be happy to accept food, but when I called up and spoke to one of the nurses she was delighted with the idea.

This was the platter- it had fresh cherries, Scottish tablet (a kind of hard fudge), peppermint bark (milk and white chocolate with crushed candy canes), and cranberry white chocolate shortbread:

Best of all, when we took it in, we were able to see two staff members who actually remembered Sophie, despite the fact that they haven't seen her since she was three weeks old. They remembered us, more precisely, and Sophie from the photos I brought to put up on the Graduates Board. You've seen these two before, but I thought they were a good demonstration of how far she's come:

And now: a) walking; b) delighted with herself; and c) crazy, in a good way.

Putting her story up on the Graduates Board (a board covered in the stories of kids who've been through the NICU) was a major final step in this journey for us. We sat for hours and hours reading those stories when Sophie was in the NICU herself, looking for some positivity. We found plenty of it- including the story of a graduate from 1989 who was on the Beijing Olympics gymnastics team for Australia last year. But we think that Sophie's story is going to be a great addition for parents who are reading that board from now.

Merry Christmas, everyone!

2009-12-26T02:10:00.000-08:00

We had a lovely Christmas this year- technically it's Sophie's second, but it's the first time she's really understood that there were festivities underway.

Christmas Eve we spent with our best friends, driving around looking at Christmas lights after a roast dinner and a present exchange. Here Sophie stalks some interesting ornaments at Best-Aunt Em's house:

Christmas Day we prepared for a big celebration with all the family:

After her birthday and now Christmas, she loves unwrapping presents:

She's always loved getting dressed up:

So she had multiple wardrobe changes on Christmas Day:

Plus one seriously awesome pair of shoes as a present (this picture is for you, Becky :)):

She was delighted to have everyone together in one place for an awesome lunch (summery and over 90 degrees, for those of you shivering in subzero snow):

And to have a midday nap on grandma:

By the end of the day she was absolutely pooped, slumped in front of her new Wiggles DVD in a food coma, like the rest of us.

I hope you had a great Christmas too!

With love from all of us.

About Us

2009-12-22T21:25:00.000-08:00

I have a little tab at the top of the new blog layout which you can click to find out more about us. Unfortunately I have no idea how to create the page that should take you to- but I do at least know how to make it link to a post within the blog, so here it is.

Who are we?

We're an ordinary little family in Western Australia. Mum Claire is an archaeologist and writer of fiction; dad Paul is a lawyer. And baby Sophie, the long-awaited next generation of our family, is a bit of a drama queen and the reason for this blog.

What happened?

Sophie was born in Albany, Western Australia on November 21st 2008. I didn't go into labour with her at all- at 40 weeks plus four days overdue, I realised that Sophie had stopped her usual active movement and was ominously still. A quick dash to the hospital confirmed that she was in trouble, and an emergency caesarian was performed under general anaesthetic.

Turns out she had the umbilical cord wrapped six times around her legs and had cut off her oxygen. By the time she was born, she had no heartbeat. Her APGAR scores were 3 and 6. She was a very unwell little girl, and had to be flown by Royal Flying Doctors Service to Princess Margaret Hospital in Perth, where she received cooling treatment.

What was the diagnosis?

Sophie was diagnosed with hypoxic ischemic encephalopathy- Grade II-III, due to the seizures she suffered after birth and the severe brain damage seen in her MRI scan. She had also inhaled a large amount of meconium, and was diagnosed with the highest grade of Meconium Aspiration Syndrome (a type of chemical pneumonia).

What was the prognosis?

Due to her abnormal EEG scan and terrible MRI, Sophie's neonatal specialists and neurologists felt that there was a greater than 50% chance that Sophie would be severely disabled, and could have outcomes such as cerebral palsy, epilepsy and developmental delays, with problems feeding herself, walking and talking.

What have Sophie's outcomes been so far?

After some initial gross motor and communication delays in her first six months, Sophie has raced ahead to be on target or ahead in every developmental area. At eight months of age, she was declared officially free of any disability.

She sat unsupported at six months of age; she crawled at eight months of age; and she walked at eleven months of age. After eight weeks of formula top-ups, we succeeded in full breastfeeding, and as of 13 months of age Sophie is still breastfed. She spoke her first word ("Meow!") at 12 months and is completely healthy, happy, and perfect in every way.

What does the future hold?

Sophie undergoes one further assessment with the Early Intervention Team in February 2010, and at that stage we expect she'll be discharged as a patient, meaning there will be no further monitoring of her health.

There's the possibility that her brain damage could still result in extremely minor learning disabilities or delays, or behavioural issues, but as time goes by this seems more and more unlikely. There is also a 20% chance that her seizures could recur in the form of epilepsy at some point in her life, and that she may suffer from asthma or a higher susceptibility to chest infections due to her meconium aspiration.

These possibilities aside, it appears that Sophie has had a complete and miraculous recovery from her severe brain injury.

UPDATE: September 2010- Sophie is still being monitored by a few specialists, but the list is rapidly shrinking. She's currently measuring between two months and a whole year ahead in every developmental area and shows no signs of any developmental delays. The complete and miraculous recovery is looking more and more certain all the time.

Why this blog?

When we came home from a month in hospital after Sophie's birth, we were faced with a world of uncertainty. We had no idea what had happened to Sophie beyond what the doctors could explain, and we'd never known anyone else who had been through the same thing. We searched the Internet for positive stories that could give us hope for the future, and came up short.

So, I started this blog when Sophie was six weeks old, in the hope that no matter what her outcomes we could show a positive story and provide a place for others to find information about HIE and related topics.

We had no idea just how positive Sophie's story would be, but we are delighted to share it with everyone, and we hope it can help as many people as possible.

Please feel free to contact me with questions or comments any time at:

clairesgregory@gmail.com

Summer with Sophie

2009-12-19T18:38:00.000-08:00

I know a lot of you are looking at this site right now to understand what's happening to another very special baby out there, and I hope you find this a helpful place to visit in this tough time.

The last couple of posts have been information-filled, so here's one with just the photos. Last Christmas Sophie had been home from the hospital only eight days, and her future was very uncertain indeed.

But see how quickly she got better. This was Sophie the day after her birth in November last year, in a phenobarb coma:

This was her waking up slowly and getting her first cuddles, about four days old:

And this was her only ten or so days later- still with a couple of weeks to go in hospital, but much improved. And at this point we'd just been told that her MRI was terrible, showing massive brain damage. Didn't sound all that good, right?

Looked fine, though.

We were so happy to be home by Christmas. In the end we had my mum visit before Christmas, Paul's family visit after Christmas, and we had the holidays with just the three of us relaxing at home, just the way it should have been from the start. We didn't worry about trees and presents and big lunches and that sort of thing- it was just as low key as possible.

Christmas 2008, home at last! By this stage it was clear that Sophie was doing pretty well, but we still had another seven months of worry before she was cleared of any long-term problems:

This Christmas, by contrast, we're having every available family member over to our place. We've got the Christmas tree up (and Sophie is in love with it), we've got the presents happening, and everyone is full of joy, happiness and gratitude that after such uncertainty last year, this year our baby girl is as happy, healthy and perfect as can be.

Here are some of Sophie's latest summer adventures.

Checking out a goat at her playgroup Christmas party- note that the finger now points properly, and gets a relentless workout- she points at everything that interests her from the second she wakes up til the moment she falls asleep, literally- last night she was even pointing in her sleep:

Matching mum:

Snuggles with dad:

And hanging at the beach:

Spending some time with granny:

The dinosaur says "Rrrooooaarr!" (this is our latest animal sound) (and don't you love her dress? It's one of her Christmas outfits, and a birthday present from grandpa):

Sophie's second word (after "Meow!") was "Hello?" on the mobile phone :):

She's currently quite into hiding in cupboards- this is apparently a lot of fun:

Helping around the house- Sophie loves to vacuum (NO idea who she gets that from- neither of us!):

And tidy up, too (very helpful, tipping out all the toys then getting in the drawer):

Helping dad in the garden- inspecting the new shed:

The Big Pantley Pull Off: Revisited!

2009-12-19T18:26:00.000-08:00

I forgot one of the search terms that appears most frequently in the list of what brings people to this site- the Big Pantley Pull Off, as described in Elizabeth Pantley's excellent No Cry Sleep Solution.

I hate to tell you guys this, but it hasn't worked for us in the slightest.

Now, I do think that's because we didn't give it the dedicated attention it required. But I also think there's a flaw in the reasoning behind the idea. The PPO relies on the assumption that when you pop the baby off the boob, preparing to hold their little jaw shut until they stop protesting and go to sleep, that they'll have only two reactions- one, they'll grizzle (at which you pop them back on the boob and try again a few seconds later), or two, they'll give it up and go to sleep.

Well, Sophie didn't do either of those things, and still doesn't- pop her off the boob before she's anything but comatose, and she pops wide awake, eyes open, and sits up.

This is a problem.

Once she's sitting up and interested, she's not going back to sleep for another half an hour. And it's remarkable how popping her off the boob once brings her wide awake. Not just half dazed, but ready to roll.

So, the PPO never worked for us, though I imagine a lot of the other techniques might have done if we'd really gone hard at it. Instead we found what we think is a better option- the Dream Baby Guide, by Sheyne Rowley. Within one day of putting the techniques in place, Sophie went from crawling off mid-nappy change to lying peacefully until we were all finished. She went from knocking the spoon out of my hand when I tried to feed her the one meal she'd eat in a day to having four full bowls of food.

All of this is leading up to a sleep program in which we teach her what we're asking her to do (sleep in her cot) before we put her in her cot to try it out.

We'll be putting that in place from tonight- we start out putting a teddy bear to bed every night for a couple of weeks to show her what we're doing. I'm very hopeful this will get her a) sleeping through the night, b) out of our bed, and c) off the boob permanently!

UPDATE 12th Jan 2010: Go here for an extensive post on the various sleep solutions we've tried, some of which have finally worked for us after a very long year.

Search results: HIE information

2009-12-04T01:36:00.000-08:00

Anyone who has a blog would be well advised to install a visit counter like the one I use- SiteMeter. It tells me how many times the blog is viewed, which pages are read, where my readers are located, and most importantly how they've arrived at the site- including what terms they've typed into a search engine to get here.

This is important, because it shows me what my readers are looking for, and it helps me decide what to write about.

As mentioned before, I've seen a rapid increase lately in certain search terms. It's because Sophie's site is now being viewed by more and more people, and as a result it comes up higher on the list when certain terms are entered.

I hope that people who read the site are finding something to help them, and to anyone out there who's searching for HIE information the same way I was after Sophie's birth, I send you my love and best wishes in the hope that things work out well for you. This is so, so difficult, watching your baby unwell and then worrying about their future outcomes- it's an unparalleled form of torture. But no matter what your outcomes, it will get better with time.

I'm going to put links in my sidebar for things like support groups, medical pages and other blogs. First, though, I'm going to list them here under the various search terms that have brought people to Sophie's pages. I'm sure you'll feel as heartbroken as I do to know that there are quite a number of people arriving here by searching these terms every _week_.

1. HIE support/ HIE support groups

As mentioned in my earlier post, there are a number of support groups for HIE, including:

Yahoo HIE Support Centre
Yahoo HIE Group
Yahoo HIE Grandparents Group (for grandparents of HIE babies)
Hemi-Kids
Facebook HIE group
Facebook Newborn Brain Cooling group (FULL of positive stories)
Miracle Babies (Australian group)
Making Contact HIE Group
Coping With Epilepsy Forum

2. Positive HIE story

We're not the only lucky ones out there- while I struggled to find positive HIE stories when I first came home with Sophie, I've since come across a number of equally lucky families whose kids are doing great. I know of three specific kids who are doing just as well as Sophie, and I know there are plenty more out there. I met one of those mums through Facebook, one through the Yahoo HIE group, and one who was kind enough to email me after reading this blog. She's a doctor, and has her own blog at Bringing Up My Boys.

I've also recently happened across the Facebook group for Newborn Brain Cooling, which I mentioned above but have to repeat here. It's full of miracle stories and amazing recoveries- no question that brain cooling makes a huge difference. Following on from that site, I located this slideshow/ video of Ellie's story. You'll finish watching it with a huge grin on your face, I promise.

There are loads of HIE parents out there blogging about their beautiful kids, if you're looking to read inspiring stories about living with outcomes like cerebral palsy or seeking information on traditional and alternative treatments (everything from hyperbaric oxygen treatments or stem cells). I might put a few links in the sidebar if I have time, but if not I recommend joining the Yahoo HIE Support Centre, where you can find a list of blogs to visit.

HIE is far from the only brain injury or issue suffered by newborn babies- there are other things like perinatal stroke or encephalocele which can cause problems. Another fantastically positive story can be found at the site of my all-time favourite blogger, Aunt Becky at Mommy Wants Vodka (warning: a touch of adult content here and there, in case you're the sensitive type)- her daughter Amelia has beaten the odds on encephalocele and is gorgeous and healthy.

3. Diagnosed HIE/ HIE baby/ my baby suffered HIE at birth

I also struggled to find technical information about HIE when I first got home from hospital with Sophie- I resorted to hunting down medical journal articles when I couldn't find anything else.

If you're looking for information on what it means to be diagnosed with HIE, here are some links (I'll add more when I track down some in actual English instead of Science Language):

This is the most detailed site I could find, but it's essentially medical gobbledegook.
This PDF has a table on the first page showing the difference between grades 1, 2 and 3 of HIE.

And here are the most pertinent facts in a nutshell, as summarised by me (Warning! Not a doctor!):

Hypoxic ischemic encephalopathy (HIE) is a brain injury caused by lack of oxygen (hypoxia) which causes restricted blood flow (ischemia) and, as a result, brain injury (encephalopathy). The good news is, as you'll hear over and over if your baby is diagnosed with HIE, the brain is amazingly plastic, especially when it comes to babies (who have comparatively few of their lifelong neural connections in place at birth). This means that the brain can in some cases (like Sophie's) rewire around the damage.

It seems that most long-term problems occur when the damage is localised to large areas of the brain. The reason for this is that different functions are centred in different areas of the brain, so if one area is blocked out entirely, so is that function. On the other hand, if the damage is scattered (as it was for Sophie, across the frontal, occipital and parietal lobes), there's a better potential for new neural paths to develop. One of our specialists also told us that the damage can "move" and consolidate over time, so the initial MRI scans (which often, as in our case, show the brain before the swelling and bleeding has subsided) may not give an accurate reflection.

Here are some of the symptoms used to diagnose HIE:

High blood acid levels
APGAR scores of 0-3 persisting for 5 minutes
Neurological symptoms such as seizures, hypotonia (floppy muscle tone)
Organ failures (kidney, liver, lungs, heart etc.)

Again, I'll note that Sophie only had two of these four and was still diagnosed with grade II- she had an APGAR score of 3 at one minute, but 6 at five minutes; she was also extremely lucky to get away without any organ failures despite having high blood acid levels and neurological symptoms.

I looked high and low for statistics on HIE, hoping to make myself feel better, but all I found was stuff that scared me senseless. You'll see all kinds of numbers, like that 75% of HIE babies die, or that 80% of those who survive will be severely disabled. But in other places, these numbers are completely different (as in, 25% will die, and 25% of those who survive will be severely disabled). Mostly that's because the statistics differ for the different grades of HIE, and they also change depending on whether the baby received cooling treatment or not.

I find that statistics don't give enough indication of individual outcomes to be of any use at all. The one thing that does seem to be the same everywhere is that the incidence of HIE is around 1/ 1000 births.

Outcomes are generally considered less positive for those babies who suffer seizures in addition to the other symptoms of HIE- but remember, Sophie suffered seizures too, and she's still fine.

4. Cool cap treatment/ whole-body hypothermia cooling treatment

I'm kind of cheating on this one because it hasn't yet appeared on my register of search terms. But Sophie's great outcomes are largely thanks to the cooling treatment she received within hours of birth. She was induced into whole-body hypothermia (a temperature of 34 degrees Celsius) for several days, which slowed her brain function enough to allow the cells to start recovering without them needing to keep her body working at the same time.

There are a lot of studies out there showing that long-term outcomes are greatly improved for HIE infants who receive cooling treatment.

5. HIE grade 2

See above for a link to a table detailing each grade. There are three grades of HIE diagnosed, and the outcomes are better for the lesser grades. The main difference between the grades seems to be:

Grade I- No seizures, mild symptoms
Grade II- Lethargic, slow reflexes, seizures
Grade III- Comatose; marked and prolonged problems with breathing, feeding, tone, plus seizures

Sophie was originally diagnosed with what we understood to be Grade 3- and sure, she was in a coma for four days, but that was induced as a result of the cooling treatment and the phenobarbitol she had to take for the seizures. On further discussion with her neonatal specialist, it appears her diagnosis was "minimum Grade 2". This means she had at least Grade 2 because seizures were present (Grade 1 has no seizures). So, even if your initial diagnosis sounds bad, there's a bit of hope.

6. Birth asphyxia/ birth asphyxia outcome

Birth asphyxia can have a number of causes, but it's basically the baby being deprived of oxygen before or during delivery. In Sophie's case this was due to the cord being wrapped tightly around her legs before labour even began (the technical term for this is Cord Accident).

There's a wide range of opinions out there about what APGAR scores and the like are necessary to diagnose birth asphyxia, but to me it's not that important- really, birth asphyxia is the cause; the effect is HIE and other problems. As with HIE, there are several grades of birth asphyxia corresponding to mild, moderate and severe cases. But it's the actual damage caused that affects the long-term outcomes, so that's the direction to look.

7. Wonder Weeks

I've been following along with the Wonder Weeks guide since Sophie was about five months old. She went through a couple of unbelievable grumpy phases where her sleep was all out of whack and nothing I could do would console her.

Having had our NICU experience, I was worried this was related to her injury. But then I happened across the Wonder Weeks website here, and found a couple of super-helpful people blogging about it here and here. The theory is that every baby has neurological growth spurts at the same ages throughout their first couple of years, and in each one their way of thinking is reordered to accommodate new ideas about the world. This is very confusing for them, so they get pretty furious- but after the leap is over, they're left with all kinds of new skills.

I ordered the book, and sure enough Sophie has hit every Wonder Week like clockwork literally within a day or two of the dates predicted. We've just had our final Wonder Week- number 52- and again Sophie was a bundle of fury for a little while before recovering her sunny disposition and racing ahead again in her abilities.

I only have one piece of advice with this- buy the book. It's extremely useful if you want to help your child reach their developmental potential quickly, as it has lists of activities to tie in with what they're learning during each developmental leap.

Got a strangely grumpy baby who doesn't want to sleep or eat? Check out the forecast and see if you're having one of the stormy weeks.

Fight for Preemies

Last but not least, I'm getting a lot of hits from people looking at Fight for Preemies. This initiative was on November 17th through March of Dimes, and aimed to raise awareness of premature birth. You can see my entry on Sophie's NICU buddy Matty (born at 25 weeks, 5 days and just 500g) here, and you can see Matty's own blog here.

A very special birthday

2009-11-20T06:43:00.000-08:00

Last Saturday on the 21st November, Sophie Rose turned one. And with that, we've completed her crazy first year, and we've won every single battle we fought.

This time last year we were still in parent accommodation at Princess Margaret Hospital's NICU, but we were feeling a lot more hopeful- Sophie was sleeping in our room for the very first time, and it was looking like she'd be released from hospital within a day or two. Then the doctors came up with a test they wanted to run to check her body's response to stress- and just like that, our stay was extended another ten days (and then an additional seven once we got back to Albany). Turns out Sophie's adrenal glands were functioning just fine, thank you, and she responded so much to the stimulus that she had to go back on supplemental oxygen for 17 further days.

We were feeling pretty fragile on this day last year. It had only been two days since the results of Sophie's MRI scans came back showing massive brain damage to almost all areas. We'd been told that despite her apparently good progress, Sophie might never walk or talk. Here's the baby we were looking at when we were given that news- looks pretty fine, right? That's what made it even harder to hear.

We thought we'd convinced ourselves that this was an acceptable outcome- as long as she was alive, the least we could accept for her was that she'd know how loved she was, and that there would be things that would make her happy through her life. We'd made all our bargains with fate, and we were determined to accept them.

But to be told that this might just be what we could expect was awful. We were mourning all the things that she might never experience- riding a bike, her first kiss, getting married, meeting her own baby for the first time... There was an infinite list of simple things that we really wanted for her- the same list every parent wants for their child- and we were greedy with desire that she should have all of them. We couldn't bring ourselves to give up a single one.

So we decided not to. We decided we were going to keep hoping for the best, and we were absolutely damned if there was a single therapy or aid that would escape our attention in our quest to help her.

And you know what? Sophie is going to have every single one of those things we hoped for, because she's absolutely perfect in every way.

We've succeeded, all of us, in beating her prognosis- first and foremost Sophie, but also her dedicated family and friends, and all the specialists we've seen since she was six weeks old. To look at her today, you'd think it had been an easy ride from day one to here, but it hasn't. She took anti-seizure medication until she was four months old. It took nearly eight months for her to overcome slight hypotonia (low muscle tone) in her left side. And as a result of our bloody-minded determination to succeed at breastfeeding, we went a little too far and we still haven't recovered- Sophie still breastfeeds close to twenty times a day, wakes eight times a night, and sleeps next to me because she can't go for more than a couple of hours without her fix.

But none of that matters, because we've travelled all the way from our worst case scenario to a best case that was beyond our wildest imaginings.

To celebrate this amazing year, we had a big birthday picnic at the zoo last week, complete with a two-tier birthday cake that took six months of practice and planning. It was wonderful to bring together all the friends and family who have carried us through this year. We know there are so many people out there who care about us- when times have been tough, and believe us, they've been tough, we've felt that love and support like a big springy net holding us up.

For those of you who couldn't make it to the party, especially those who only know us via the internet, we want to thank you, too, for being part of that net.

And something you might not realise- by reading this blog you're helping not just us, but also dozens of other families out there who are facing similar situations. You see, the more visits this blog receives, the higher it travels in search rankings. Lately I've seen a huge increase in the number of hits I'm getting from people looking for "HIE support groups". Thanks to you, people who are searching are finding what they need. I'm about to do a couple of posts tailored to those searchers to make sure they get the right resources.

So, we'd love it if you could leave a comment and let us know who we're thanking! We know we have a lot of readers, but we don't often see your names.

I'm going to keep blogging about Sophie's progress until our next Early Intervention session in February, and after that I'll think about how frequently to update. In the meantime, Sophie is walking like a champion and already adding new words to her vocabulary (after her first word, "Meow!", she's now started saying, "Ello!" on the telephone). She plays games with her finger puppets and mothers her doll. She's an amazingly clever, tenacious and determined little person, as ever. We can't wait to see what she achieves in her second year.

To the point

2009-11-17T18:55:00.000-08:00

The last Ages and Stages Questionnaire I filled out for Sophie was at six months of age. I was getting used to seeing the hateful things every couple of months, so I expected I'd see one again shortly after that.

I guess the big Early Intervention assessment at 8 months took the place of one potential survey. After that, I forgot all about them.

And then the 12 month survey turned up in my mailbox about a month ago.

Because Sophie is doing so fantastically well, and also because I'm impatient, I went through the whole thing and filled out everything I could when she was only 11 months old, not 12. You may recall from previous mentions of the ASQ that there are five categories (communication, gross motor, fine motor, problem solving, and personal social), and each contains six questions. You only need, on average, about three "Yes" answers and a "Sometimes" to pass each section.

Well, at 11 months of age, Sophie had 100% in four out of five categories (well, almost in gross motor- she managed to get her sixth yes when she took several consecutive steps a couple of weeks later). Fantastic.

But in the fifth category, communication (again), she scored a big fat whopping TWO out of six.

Huh? I was, to put it mildly, surprised by this, especially when every other area was perfect. I know we've previously heard that she has a mild communication delay, but our last visit to the speech therapist determined that she had overcome this.

Anyway, I guess I was putting the horse before the cart again, because now, three days before her first birthday, she's scoring five out of six in communication, too. It just shows that you can't work on everything at once- while she's been busy learning to walk, she's taken her time getting to the communication milestones.

The two things she could already do were play a nursery game like clapping hands without being shown how, and look in the direction of an object (specifically, Daisy, plus a lot of other things now) when asked where it is.

The three she's caught up on are following a simple instruction without being shown how (she can do several now, like eating a piece of fruit when told "in your mouth"); saying one word or sound in addition to mama/ dada (in her case "Mow!" every time she sees the cat); and pointing to indicate that she wants something.

The pointing was one of those odd things that she seemed to figure out overnight, and now she points relentlessly at everything and everyone. It's quite cute, and I like that she can now communicate clearly what she wants (even if it's something she can't have, like my mobile phone, the denial of which usually leads to a huge tantrum).

Sophie points out an emu:

And a cow (cow not featured):

The last one left on the list is shaking her head or nodding to indicate no or yes. I have a feeling that's going to be another overnight discovery, but at the moment she shows exactly no signs of figuring that one out.

Still, 35/36 ain't bad- in fact, it's well ahead of expectations. I really can't wait to get to our next Early Intervention assessment in February. I know the specialists are going to be absolutely blown away by her, and I'm certain she's going to be discharged as a patient.

Baby steps

2009-11-17T04:00:00.000-08:00

The one we've all been waiting for is finally here- Sophie took her first steps a couple of weeks ago at eleven and a half months of age.

She's been standing up on her own for almost two months, but she's been very slow to translate that into walking.

We've been encouraging her constantly, and it finally paid off. She was getting undressed for her bath, and she wobbled, then took one tentative step. Paul was so excited that he rushed out to the kitchen with her and got her to repeat it.

Since then she's been practicing more, and she's up to six consecutive steps.

We'd been convincing ourselves that it wouldn't matter if we missed those first steps, since she was about to start daycare and there was a good chance she'd take them there. But you know, having been told that she might never walk when she was only a couple of weeks old, it turned out to be a really overwhelming moment. We both shed a few tears.

We are, as always, so proud of her and her achievements.

Due dates

2009-11-17T03:51:00.000-08:00

So, as briefly mentioned in my previous post, this day last year was Sophie's due date.

Although I was well aware that only 4-5% of babies actually arrive on their due date, it was still a real disappointment to end this day with no baby in my arms. I was just looking forward to meeting her so much.

If I'd known how things were going to go, I probably would have gone out and stocked up on hard liquor.

Despite our rocky start, though, I have to say that one year on, our lives are even better than we could have imagined on this day last year.

We have a happy, healthy, beautiful daughter. I'm about to go back to work two days a week (I got that job I was going for). We've bought our own house. We have everything we wanted, and much more. Sophie amazes us every day, in little ways and big. And we can't wait for her first birthday on Saturday.

Prematurity Awareness Month

2009-11-17T03:18:00.000-08:00

So, it turns out November is also Prematurity Awareness Month.

As encouraged by my favourite blogger Aunt Becky, I've joined the Fight for Preemies blogging campaign at Bloggers Unite by writing a post about a preemie baby who has touched my life.

It turns out it's an appropriate date to talk about our friends Pam, Anthony, and little Matty. This day last year was Sophie's due date. I was sitting on the couch willing her to pop right out, very much over the whole pregnancy thing, and wondering how much longer I was going to have to wait (four more days was the answer, as it transpired). I was grumpy. I was exhausted. I was uncomfortable.

And I don't think I would have been anywhere near as impatient, nor so quick to disregard my blessings, had I known Matty's story.

Matty, you see, was due just two days before Sophie. But he arrived almost five months early at only 25 weeks and five days of gestation.

We first encountered Matty and his parents at Princess Margaret Hospital while we were floating through the halls in a haze of shock after Sophie's birth and subsequent illness. We were lucky enough to spend the whole three weeks of our NICU experience staying in parent's accommodation, but others were not able to do so. Nonetheless, every night we were there, we noticed another couple who spent hours and hours sitting next to their baby's crib, reading to him from Harry Potter. They never missed a night. Their dedication was incredible.

We couldn't help but notice that they were up to later books in the HP series, and being logical types we concluded that they must have been doing this for some time. Just how long we weren't aware at that stage. By strange coincidence, Paul recognised Matty's mum Pam- they had gone to high school together some ten years before.

Several weeks later, we were home again, and I was researching on the Internet for stories of graduates from Ward 6B, the NICU. To my surprise, I happened across Matty's blog, and it was there I was able to read his whole story. I started at the first entry, and I read for probably four hours. I couldn't stop. You can read it here, too. It's a particularly amazing journey.

In short, Matty's early birth meant that he had a huge hill to climb on his way to full health. He faced blood transfusions, surgeries, infections, oxygen dependency and all sorts of other issues. He weighed a tiny 500 grams (about 17oz), which put him in the category of Extremely Low Birthweight Infants.

Matty got to go home a few months after Sophie, after a total of 202 days in hospital. Today he's happy and healthy and absolutely gorgeous.

Matty was one of the main reasons we started this blog- we wanted to help other people as much as reading Matty's inspirational story helped us.

So, spread the word. Prematurity Awareness Month aims to encourage greater understanding of the reasons behind premature birth, many of which are unknown. In time, it is hoped that fewer and fewer families will have to face these battles.

March of Dimes has more information, here.

Miracle Babies Awareness Month

2009-11-17T03:11:00.000-08:00

Kicking off a whole stack of November blog posts, I'd like to mention Miracle Babies Awareness Month, which happens to be this one. November, that is.

The Miracle Babies Foundation is an Australian organisation founded to help families of babies who spend time in Neonatal Intensive Care Units, whether because they are born premature or because they're very sick.

The Miracle Babies Foundation provides advice and support for families both during and after the NICU experience. I can tell you from personal experience that ongoing support is so important. They raise funds for their activities through a number of different avenues, but in November, you can buy merchandise to support them (wristbands and the like) through Myer and Best and Less stores across Australia.

Read more about the Miracle Babies Foundation here.

Reminiscing

2009-10-26T02:38:00.001-07:00

A colleague of Paul's is about five months pregnant at the moment, and today went for her fetal anatomy scan where she learned the sex of her baby.

It got me thinking about the day we found out we were having a girl, and reminded me how wonderful my whole pregnancy was. Sometimes that gets a bit lost in the stress that came after Sophie was born, but I really loved being pregnant. From the first minute the test showed up positive to the very end, it was just one deliriously happy moment after another. I was just re-reading my pregnancy journal last week (which in the best tradition of me and diaries was filled in to about 13 weeks and then forgotten) and I wrote that every one of those moments was something you could never imagine until it happened.

Seeing the pregnancy test come up positive; seeing a tiny, pulsing heartbeat on the first ultrasound; seeing the little blob move all by itself like a wee jumping bean on the second ultrasound (at just 9 weeks); seeing every part of her perfectly formed on the detailed scan at 13 weeks- I'll never forget what those moments felt like. They still make me tear up whenever I think about them.

A side view of Sophie at 13 weeks:

See her four little fingers and her thumb as she waves to the sonographer?:

A 3D view of Sophie at 13 weeks- she's lying on her back looking up, and her head is at the top of the picture:

But I think finding out that we were having a girl actually topped all of those moments. When I first announced that I was pregnant, a lot of people surprised me with how adamant they felt against finding out the sex. But Paul and I were always on the same page- we always wanted to find out as soon as possible what we were having. I couldn't stand having to call my baby "it". I felt a very strong connection to her right from the start and I felt like I needed a pronoun to really know who I was talking to in there.

The ultrasound technician asked us right at the start of our 20 week scan if we wanted to know the sex, and of course we said yes. I assumed she'd look straight in the relevant place and tell us, but no. We sat through a good hour of the scan while she noted that all the legs and arms and livers and so on were in the right place, and then she basically wrapped it up and said we were done.

No mention whatsoever of the sex.

I figured we had a stubborn leg crosser and she hadn't been able to see, so I was feeling kind of disappointed. But right as we were ready to walk out the door, she asked us again if we wanted to know the sex. We still did. And she told us we were having a girl.

There were only two possible answers she could have given, and we'd thought equally hard about either possibility. We would have been equally happy with either outcome. But still, hearing that we were going to have a daughter was one of the most indescribably wonderful moments of my whole life. I didn't stop crying for about three hours, I was so happy (and hormonal, of course).

Sophie sucked her thumb for the *entire* 20 week scan (here she's lying on her back, head to the left, arm at the top):

From then on, she was Paul's "wee girl", and she's still called our "wee girl" a whole lot of the time. When Paul got home from work that night he went online and started looking up fairy princess castles and My Little Ponies. I was protesting that *my* daughter was going to be a tomboy whether she liked it or not, but he wouldn't hear it at all. She was his little princess right from the start, and she always will be.

Give and take

2009-10-24T05:09:00.000-07:00

Sophie has a very cute but also unbelievably annoying favourite game at the moment- she likes to hand her toys to other people, one by one- all of them, no matter how many are around her- and the receiver then has to hand them back one by one. Repeat. Repeat. Repeat. It frustrates her quite a bit when she hands her toys over to smaller babies, then expects them to hand them back over. She's pretty relentless.

It's hard to say no, though. She has the cutest face in the whole world.

Outside interests...

2009-10-12T04:10:00.000-07:00

... are very important when you have a wee one who clings to you 24 hours a day like a tiny, cute leech. Very difficult to maintain sometimes, I've been finding. I'm making a major effort to keep up with my interests, though, and I've taken two big steps this week.

1. I've applied for a job. *Gulp*.

I love being at home with Sophie, mostly, but sometimes I really do feel like my brain has taken long-service leave and it's not planning on coming back. I knew it was the right choice to apply for this two-day a week position when I started viewing daycare centres for Sophie earlier in the week. Instead of feeling anxiety or sadness, I felt huge excitement. I couldn't stop thinking about how great it would be to travel to work in the morning with Paul, and to spend a couple of days a week thinking and doing.

2. I've started a new writing blog with three friends at All The World's Our Page.

Some of you know how much I love my writing, and a lot of you don't. But I really do love it, and I miss it so much when Sophie keeps me occupied to the point where no other activity is possible. Before Sophie arrived I was very close to finishing my first novel, and it's still there waiting for me to get back to it. The good news is I have a whole new perspective now I have Sophie.

The other good news is the friends I'm writing with at the new blog are at various different stages of the writing process, and I'm relying on them to drag me along behind them as they speed toward fame, fortune and success.

Anyway- go check out the new blog, and leave a comment. If you do, it'll put you in the running to win this week's book giveaway. There's another one every week for the next four weeks.

Speech and hearing

2009-10-10T05:48:00.000-07:00

As you'll recall, we were told a couple of months ago that Sophie had a small delay in her speech skills. On the day of the assessment, she was quite quiet, but they also took into account that we reported she wasn't babbling or shouting for attention (both of which she started doing a week after the assessment).

We went to the speech therapist about a month ago, and were told that she was now up to scratch with her communication. I didn't realise we were going to get an official report, though- and when it did arrive a week or so ago, I was pleasantly surprised to discover that Sophie has been assessed not only to be developing as expected in three areas, but actually ahead in two areas.

This is, as you can imagine, an enormous relief.

Her advanced areas are those of understanding what is said to her, and her play skills (no surprise). They were very impressed that when shown a doll, she picked it up and kissed it. She loves to play kiss the baby in the mirror, and she's lately developed a new game in which she piles all her stuffed toys onto her dad one by one and makes him give each one a kiss and a snuggle. She's a very affectionate little person, and very much geared towards helping other people feel as happy as she does in response to certain activities.

Another example of her incredible social skills in action, I think.

On the road

2009-10-10T05:02:00.000-07:00

As mentioned, we had a fantastic trip over east, with a whole lot of first experiences for Sophie, who also brought home a host of newly mastered milestones.

Her experiences included:

Meeting numerous relatives for the first time, including her great-grandmother, great-great-uncle and aunts, and various other representatives of four generations of my family. Here she is getting a snuggle from my grandmother, who absolutely loved her (of course!)

Learning to play the piano (well, whack it, anyway- here she is taking lessons from her great-uncle)

Patting kangaroos and koalas:

Seeing the sights of Sydney, including the Harbour Bridge and the Opera House:

Meeting a variety of other animals at Taronga Zoo, including new baby elephant Luk Chai

Giraffes (not looking mighty impressed, is she?):

Monkeys (wait, that IS a monkey, isn't it?):

Or is it a Fennec Fox?

Travel on buses, ferries, trains and taxis (here she is preparing for a hard day of sight-seeing; on her favourite mode of transport- the open-topped double decker tourist bus)

Eating a huge variety of new foods, including Singapore noodles, Turkish pizzas, meatloaf, and everything in between. Sophie really had a food revelation on this trip, eating more than ever before, and has come home now happy to eat whatever we're eating for dinner instead of mashed up baby food.

Other things she came home with:

Tooth number five, which appeared sometime early in the holiday (it's on the top right, next to her giant bunny teeth)

The ability to clap properly- very cute indeed. She now likes to clap along whenever she hears music, be it from a toy, on Play School, or on the radio.

The ability to say "Mum-mum" (yay! Finally!)

The ability to dance by bopping up and down on all fours (and when standing up, too)

A renewed interest in her dummy- she likes to carry it around in her mouth like a dog (the dummy, her sippy cup, and pretty much anything else that fits in her mouth)

A love of role-playing games- she'll now brush hair (though we'll call her an apprentice hairdresser at this stage), brush teeth, feed people, kiss stuffed toys, and all manner of things

From one to ninety

2009-09-19T23:42:00.001-07:00

September was another crazy busy month. I'll try to break it down into a couple of posts.

The big even of the month was a great trip to the other side of Australia to celebrate my grandmother's 90th birthday. It was quite an emotional trip, all considered- this has been the first chance for most members of my extended family to meet Sophie and see how fine she is with their own eyes.

Before we left I was a little worried about how Sophie would be on the plane. Not behaviour-wise- I knew she'd be fine with that, and she was- but rather oxygen-wise. After she was discharged from the intensive care unit back in December, Sophie and I flew home on a commercial plane with a nurse who was monitoring her oxygen saturation levels. In the hospital, anything under 94% oxygen saturation was a problem, and the fact that Sophie kept dropping below 90% was the reason she had to stay for three long weeks.

On the hour-long plane trip back home, her oxygen saturation levels went down to 80% and even below that. Not good. She would start nodding off and closing her eyes, and the nurse would give her a shake, and her oxygen saturation would go up again. It was scary as hell. He was trying to avoid giving her oxygen, because "failing" at a flight without needing O2 would mean she was banned from flying until she was 6 months old. She passed, just, but she ended up spending an extra 7 days in hospital needing supplemental oxygen because it took so much out of her.

So, I know her lungs are fine now, but still- I was a tiny bit nervous that there might still be a potential for a problem, especially since this trip included four flights of between one and five hours.

Anyway, it turns out there were no problems whatsoever with her oxygen levels on these flights- she was as perky as anything on all of them, even the midnight horror. She was just so excited by all the new things to see, and all the new people to meet (particularly the poor hapless folk in front of us and behind us, who had to put up with Sophie popping her head up at intervals to gawk at them). She is the most amazingly adaptable baby- nothing fazes her at all. Airports, different time zones, take-offs, landings and turbulence- all of those things were just fascinating to her.

Follow that up with daily gatherings of loads of extended family, with everyone wanting snuggles, smiles, waves and generally raving about how gorgeous she is- and she took it all in her stride. She's got better social skills than most *adults* I know. I've never seen a child who knows how to work a room the way she does. She's taken to doing a neat little trick at cafes and on public transport- if the people sitting at the next table all laugh at something they're discussing, she'll lean over and go, "HA HA HA HA!" like she's in on the conversation. It's somewhere between embarrassing and extremely cute.

Here she is having a crazy moment on the flight home:

And here she is buttering up the Virgin flight attendants about a minute later (who, me?):

When everyone goes home

2009-09-08T18:18:00.000-07:00

I was talking recently with a friend of mine whose daughter had an identical start to Sophie. We both discovered that after a month or two, once it was clear that our kids were past the worst and doing well, there was a tendency for people to feel like we should just "get over it" all and act like nothing bad ever happened to our kids. After all, they're healthy now, right? Why would you still linger on those weeks of fear, worry and hurt, and the months of uncertainty? Why would the raw hurt of it still sit just under the surface, ready to bite now and again at unexpected moments?

I had one of those moments a couple of days ago- a little flashback window into the way we all felt a few months ago. I was waiting for Antiques Roadshow to start- because my life is just FULL of excitement at the moment- and I caught the tail end of a documentary about becoming a father. At the end, they showed a guy whose wife was having a baby.

The baby was born perfectly healthy and happy, and the expression on the dad's face made me burst into tears. He was amazed, and shocked, and excited and happy all at the same time. And just for a brief second, I felt this incredible heartache that Paul didn't get to have that moment. Once in a while I get that- a moment of massive sadness.

I didn't have a plan for the perfect birth- I don't believe there is any such thing. I didn't care if I had a thirty hour labour, interventions, a caesarian, anything. Really, the single only thing I wanted out of the whole birth was to see my healthy baby at the end of it all.

And that's the only thing I didn't get.

So, fast-forward nine and a half months. Sophie is sitting on the rug in the living room playing with her rubber ducky. Last night we had a great game where she and I each held a ducky and "swam" them at each other. They had a little ducky smooch, we did some quacking, and then we each had a chomp on our duck. Then she handed me her yellow duck, I handed her my green duck, and we did it all over again. It's unbelievable that a baby of her age can come up with a game like that. UNBELIEVABLE. I can't get my head around it. She amazes me every single day. She makes me so incredibly happy. Every night I fall asleep snuggled up to her, and I kiss her on the head and tell her how much I love her. She's just a star.

But despite all that, those sad moments still come up once in a while. They only last a few seconds, and then they're gone, because hey- it's all good now. But the thing is, those sad moments are *necessary* for good mental health. They help you move on. You feel the sadness, you acknowledge it, and then you remind yourself of all the great things in your life and you feel happy again.

I think every mother, regardless of how things start, has good days, bad days, happiness, sadness and a full range of emotions. How are you supposed to teach your own child about the ups and downs of life if you don't have down moments yourself? How else do you teach them that there's nothing wrong with being sad once in a while?

I guess that different people deal with things in different ways. Personally, I respect everyone's right to their own feelings. Feel sad about it once in a while; forget it ever happened. It's up to you how you deal with your own experience, and it's not for anyone else to judge.