Rachel's Update At 14 Months

We've been very blessed that Rachel's doctors are who they are. They are very good, even checking with doctors overseas on their own initiative, including informally discussing her case at the Mayo Clinic.

In a nutshell, she has neurofibromatosis type 1 (NF1) involving the right orbit, the plexiform tumor originating from the trigeminal nerve, with congenital glaucoma of the right eye, head and facial enlargement on the right side above the jaw, and multiple cafe au lait spots all over her body including a large patch on the right side of her face. She currently also has the sniffles, although that wouldn't really count.

Chemotherapy is out because the tumour is not fast-growing cells. Radiation is out because it can trigger more tumours or cause malignancy of the existing one. Surgical resection is on the cards for when she's older and has the size to deal with the likely high volume of blood loss because the tumour is highly vascularized and deep in the head, making it hard to staunch bleeding.

For now we're aggressively treating the glaucoma. She has had multiple laser ops (TCP) done to zap off the fluid-producing parts, but they keep regenerating. Already had a trabeculectomy to open a hole in the eyeball when she was only 1 week old, but that closed up pretty fast. Then she had an Ahmed implant put in to drain fluid via a tube into a self-release reservoir inserted onto the exterior of the eyeball. It's working but every now and then too much fluid will be produced and raise eye pressure. So, she has just had another TCP done this Monday to cut fluid production. Hope the effects of that will last a while longer than the previous ones.

NF1 is a progressive thing. She may develop tumours anywhere else along the nerves (inside the body or on her skin) later on. We can only hope they'll not be in dangerous places. She may have learning difficulties. Or she may not get anything more than what she already has. No one can tell since individuals vary a lot in how NF1 manifests. But she certainly will have to deal with the facial disfigurement all her life.

So far no problems with that other than us explaining to people that no, she didn't get involved in some accident or bad fall, she didn't get socked in the eye by a south paw, but is just "born like that". And people pity her and play with her, and then get charmed by her response, and realise that the disfigurement is irrelevant and simply enjoy her chubby little curly-headed baby-ness. It's heartening and quite a tickle to see how it always follows the same path of progression when people first meet her, to them saying bye-bye with some reluctance!

So, one day at a time. Oh yes, we recently managed to get downgraded to become subsidized patients at the SNEC where she is being seen for glaucoma, instead of paying full private rate. That means 50% or more savings, thank goodness, considering it'll be a lifetime follow-up. Another good thing is that she is now a happy camper when it comes to taking oral syrups from the syringe, even protesting when we take it away! Silly baby.

Just for the record.

Talking Tees

I found the following scribbled in pencil on the back of Old Navy clothing sizing charts I printed off the internet, in 2007! That means Sophie would have been about one (born in 2006, Year of the Dog), Sarah four, and Matthew six. No Rachel yet.

Sean: Can I eat bones? Am I a dog?

Sarah: No, you are not a dog. Sophie is the dog. She's the boss.

Matt: Ya, Sophie is the boss. One of her t-shirts says, "The Boss."

Sarah (to Matt): How can they talk?!

Ten Years

Ten years in the blink of an eye,
Ten years' worth of smiles and sighs.

Ten years building with God's bricks,
One and one make six!

Happy Ever After

So Rachel is now one. I thank God for all that has transpired this year.

Despite the NF1, or perhaps because of it, I believe we're overall happier than before. Now, nothing can happen to us that could be really bad. Even if it's anything conventionally viewed as terrible, it's all just part of life. Love carries on. We have every good thing we could possibly need. Anything else is a bonus!

The little baby is such a happy, sweet-tempered child. She crawls, claps, laughs, waves bye-bye. Loves chewing paper and cardboard. At one time I was sad that I might never find her the cutest baby in the world, because of the distortion caused by NF1, but I found myself recently unexpectedly asking S if he didn't think so!

We got her a little cake covered with pink chocolate shavings, and decorated with plastic toys like a Spider-Man figurine, a Miffy figurine, a coconut tree, a hot-pink flower with leaves, a strawberry, a gooseberry. Haha! It was so random, and tasted really good! Sophie went strictly for the shavings while the older kids disdained them in favour of the chocolate sponge. Rachel also had some of the chocolate sponge, and then went on promptly to her bedtime routine. She even managed to say "pome-pome," when we got her to try! Our little darling. So loved. I hope not "so spoilt" too, when she gets older.

Enny Wenny Werr

"Baa baa black sheep
Enny wenny werr
Yes sir yes sir tree blacks for

One for the monster
One for the day
Little boy sits in the tree all day

Baa baa black sheep
Enny wenny werr
Yes sir yes sir tree blacks for."

And Sophie really thinks she is singing it properly too!

"Can you tell me the months of the year, Sophie?"

"Jannery, Feddery, March..."

-------

"What did you eat at the party?"

"I ate cumcuber and sausage."

-------

"Go and change, Sophie."

"Oh, change into my uniform?"

"No, you're not feeling well so you're not going to school today."

"Oh, I'll stay at home and you will look after me?"

"No, I've to go to work."

"Oh, Aunty will look after me and I will look after Rachel and you will go to office?"

A Precarious Peace

I thought we were cool. About Rachel's condition and all. Just living life as it unfolds, going about our day to day things, appreciating the present and hopeful about the future.

I reached out to someone who also has a child with a congenital condition. We met briefly, and I received messages from her on my phone. She really wants to help. She told me about her grown-up friend with a similar condition as Rachel's, recommended another doctor, suggested I do what she did for her child to counter potential learning difficulties, such as put Rachel on a special diet, take her for spiritual healing sessions, and do a famous baby reading acceleration programme with her. This kind lady reiterated her suggestions a few times although I repeatedly tried to convey the message that we were not seeking additional help as such.

Boy was I surprised to find myself irrationally upset and in doubt after that short exchange. Perhaps this goes to the heart of every mom's fears, that she is not doing the best she can for her child. It has never occurred to me to flash any cards at Rachel. In the first place, I don't believe in those baby programmes. Other people are very welcome to go for them if they so wish. Not me.

But to have the recommendations so adamantly repeated, citing how doctors are shocked at her child's development (they were warned about mental retardation), bore down on me that I could in fact be short-changing Rachel by not doing all those things as well. It didn't help that I had very recently received news that I failed my exams, which means resitting them at the end of the year, upsetting all my other leave plans.

What better set-up for the bug that truly bit? Influenza! The last time I had it, I had just learnt that Rachel was on the way, and it raged for a week. Thankfully, this time round the fever went away after a single dose of ibuprofen. It did however leave me with hugely swollen eyes that gave great merriment to my children. Can't say there wasn't a silver lining to that cloud.

But I'm more thankful for the unexpected recovery of peace. There's nothing a few days of lying in bed won't solve, I find. There's only so much one can weep, or fear, or doubt, without growing suddenly tired of it and throwing it all off with a single resolution of the mind and heart. This being Holy Week is another "bonus" - everything united to the cross of Christ, whose yoke is easy and burden light.

The clincher was when I went back to work to find that big boss had been looking for me. Must be some work issue - he is well known to have exacting standards. No, it turned out to be nothing work related. Instead, having noted my sudden absence, he was actually worried that I might have been unduly upset by my exam results. He had even asked another partner to check that I was all right as he was going away on a business trip himself, which explained that unknown missed call number I found on my phone. I'm touched! And I'm not about to commit harakiri over a bunch of test scores, certainly - who's going to cut all the kids' nails if I'm gone??

Funny how people who come across as tough are often actually softies inside. Oh well. Time to put down deeper roots in faith and hope. Nice time, now.

Ford S-Max

Our reason for changing cars has always been to accommodate our growing family. So it was a MkI Focus sedan until we had 3 kids, and now with the fourth, the Edix had to go. Both cars had served us wonderfully for four years each, and would still be highly recommended for families of up to five and six respectively. But with helper in tow on weekends it meant one child had to be carried or sitting on the floor, neither comfortable nor safe solutions.

I had previously test-driven the S-Max (or Smacks as we like to call it) around two years ago, and immediately loved the way it drove. It reminded me of a grown-up Focus, whose steering and chassis I had missed when we switched to the Honda. Meatier, less delicate, but just as precise and responsive to inputs, it was stable and planted on straight roads, and a dream to corner. But at over $110k (then), I had to write it off as beyond my reach.

Fast forward to the beginning of February this year, and a few factors came together to prompt a decision. The Edix was nearing its fourth birthday, and while remaining utterly practical (I still cannot find another reasonably-priced, yet fairly compact car that seats six adults comfortably, along with a full Corolla-sized boot), it was, as mentioned previously, starting to strain from our family’s needs. Also, with 130,000km on the odo, bigger wear and tear costs were starting to creep in – I had already replaced a front suspension arm, and I suspected the wheel bearings were heading south as well. On top of these, COE prices were on the rise, in anticipation of the impending the quota cut, so if we were to make a change, it would have to be soon.

A 7-seater was a given, but which one? The usual suspects (Wish, Stream et al.) proved to be too narrow. We currently have a rearward-facing baby bucket seat, a pretty bulky toddler seat and two boosters – try any combination of these in the above cars and you’ll find them reduced to six-seaters with tiny boots. Infuriatingly, even the largest Japanese MPVs have benches for their second row, with the middle seat inevitably smaller than the outboard two, and given a token lap belt instead of a proper pre-tensioned three-point job. Looks like not all passengers are meant to be treated equal.

From there the choice became clearer. The Renault Grand Scenic, VW Touran and Citroen Grand Picasso all boast three individual seats in the middle row, but have much smaller boots than the Smack’s decent 285 litres, and there was no way in heck I’d live with barges like the Espace or Voyager on a daily basis. I’d sooner get a Vito.

Of course, a new Smacks was still pricey at a dollar under $100k (in Feb), while 2-year old examples, bought for nearly $120k, were going for around $80k. It made a lot of sense to buy second-hand, especially for a fast-depreciating, “non-luxury” conti brand like Ford. A quick check online confirmed two used S-Maxes for sale, a Trend and a Titanium. The Titanium was a few months older and had more mileage on the clock, but the dealer wasn’t asking for much more than the Trend, plus the OMV was a whopping $5k greater. Even ignoring the better trim level, it was looking like the better deal.

But what a trim! In the UK, 70% of owners spec their Smacks to Titanium, and it’s not hard to see why. 17-inch rims, auto-lights and wipers, double-moonroof, 8-inch information screen in the instrument cluster with steering-mounted controls, dual-zone climate control, cruise control, bi-xenon headlamps and cornering lights, auto-dimming rear-view mirror, two extra airbags for second row passengers, full leather seats, 8-way powered driver’s seat and powered-height adjustment for the front passenger. All this on top of the already not-impoverished Trend level.

Admittedly, some of these toys are less useful than others, but they are nice to have all the same, and even better with the minimal price difference between the two cars I was looking at. I was pleasantly surprised with the effectiveness of the rain sensors, one of the features I had originally written off as gimmicky. With the start-stop rain we’ve been having recently, it was comforting to have one less thing to have to keep adjusting on the move. And not having to take my hands off the steering wheel to control the cd player is pure joy. But no such luck with my iPod, which is connected to the lovely 8-speaker system via a simple coaxial input instead of data-readable USB.

A week into ownership, I was trawling through online reviews when I discovered from a photo that my very car was used by Straits Times for their long term test! This got me a little apprehensive at first, especially when I realized that at the end of its five month stay with them, it was sent to Sepang for a right thrashing. But then again, I believe mechanical parts are meant to be used (even used hard), and a comprehensive pre-sale inspection confirmed the car was still in excellent condition. On the flip side, being a press car meant that Regent Motors took particularly good care of it, right down to banishing the few squeaks and rattles that were reported. Thus far, the only cabin noises I hear come from my sunglasses in its holder and the child seats. It is otherwise a highly-refined and relaxing cruise. So much so that my second daughter seems to fall asleep on drives of even moderate distances.

At first glance, the Smacks appears to be Wish-sized, such is the illusion stemming from its tapered shape. Park the two side-by-side however, and the size difference becomes quite obvious, the Ford being around 5% larger in every major dimension except for height. The main benefits of the increased size are particularly noticeable in afore-mentioned boot space and cabin width. Believe me, that little breathing distance between siblings can make all the difference between pleasant journey and civil war.

One practical downside of its girth is a bus-like turning radius, large at 11.9m, but made borderline-unacceptable by the Edix’s tiny 10.5m effort. If those numbers don’t seem to mean much, I suggest you find a two lane U-turn and discover how significant that extra 1.4m can be. I blame the necessity to fit the Focus ST’s 2.5 litre 5-cylinder motor into the engine bay for the Smacks’ lack of parking maneuverability. Sure enough, the ST shares an identically-dismal turning circle.

Rather unfortunately, we don’t get that lovely turbocharged engine in Singapore, at least not in the Smacks. And the new fast but frugal 2 litre Ecotec will not arrive until later this year, so what I have under the bonnet is the 2.3 litre unit, closely-related to the one found in the Mazda 6. For a VVT, its headline figures (161 hp, 208 Nm) are not outstanding, but matched with a silky 6-speed auto gearbox with sport mode, the power is put down to the road very well.

Driven casually, progress is smooth and shifts near-indiscernible, with engine noise barely intruding into the cabin. Give the accelerator a stab however, and the gearbox will drop one or two notches, the engine note hardening up and sounding suitably sporty from 3,500 rpm onwards. You never feel the resulting surge, in terms of pure accelerative shove. But a glance at the sweeping speedo needle and relative velocities of adjacent traffic will convince you that you are beginning to travel rather quickly indeed. This deceptively-relaxed situation is compounded by the Smacks’ exceptional body control, which feels more tied down the faster you travel.

A short blast down Old Upper Thomson Road showed how its dynamic components – engine, gearbox, steering, suspension, brakes - come together so beautifully when showed a series of bends, it is truly more than a sum of its parts. Despite weighing close to 1.7 tonnes, the S-Max resists understeer and body roll in a fashion that would shame many hatchbacks with one-third less mass to carry around. The result is a real confidence in your machine, which in turn leads to better judgment and situational awareness. Ford’s engineers should be applauded for consistently instilling such crucial driving intangibles (and pleasures) into its mainstream cars.

As always though, the snag with enthusiastic driving lies in fuel consumption, and this engine is proving to be something of a drinker. The official combined figure is 9.7 l/100km (or 10.3 km/l), and while this number is certainly achievable, it takes a strong will, light foot and quick swapping into the higher gears. With average consumption staring at me from the large info display, I have learnt to avoid city driving as much as possible, and detest idling the engine for any time at all. But sometimes, just sometimes, the urge to open the taps to 5,000 rpm proves irresistible, and the bliss of the experience lasts right up to the point where I remind myself to drive like an uncle again.

So there you have it, our new old car. Hugely comfortable, hugely safe (9 airbags!) and at certain U-turns, just plain huge. It may not have a factory-fresh crispness, but at least I know its teething gremlins have been taken care of. Above all, it’s the right car for me at the right time, which is what matters most. I’m glad to be back with the Blue Oval.

Get Well Soon, Sophie

Little Sophie has a cough and low grade fever, so she can't stay over at her cousin's place with her older brother and sister. The poor thing cried when we left her to be put to bed by our helper.

When we got back the house was already dark. But she was still coughing in her room so we went in and she immediately sat up. "Hello Mommy hello Daddy."

She felt clearly warm to the touch, so I gave her some Paracet. As she snuggled back down, she asked why she couldn't stay at Natalie's house.

"You're not feeling well, Sophie. When you're well you can stay there next time."

"Oh, when I'm well I can stay at Natalie's house?"

"Yes."

"Oh, Auntie Sue Lin will wake us up? And we can have breakfast, and drink milk?"

"Yes."

In the darkness I could just about make out her smile and wide-opened eyes as she lay there imagining staying over, although here she was, left out of all the fun, sleeping on her big brother's bed as a consolation.

She said, "I'm happy that Kor-kor and Jie-jie can stay at Natalie's house."

Being Thankful

Matthew was given a Catechism class assignment: write down the things he's thankful for. He wasn't quite sure how to begin, so Sean asked him, "Well, what are the things that you're thankful for?"

Matt thought a while and said, "Wii?"

Sean replied, "OK... What are some things or people that if you didn't have them anymore, you would feel very sad? Say the TV. If you didn't have the TV anymore, would you be really very sad?"

"Ermm... not really."

"OK. What about Sophie?"

"Err... not really. She's quite naughty sometimes!"

"But if she wasn't around anymore, would you feel sad?"

"Ya."

"And Sarah?"

"Yes."

"Mommy and Daddy?"

"Yes."

"Auntie?"

"Yes."

"So, what are the things or people that you are thankful for?"

Matt thought a while. Then he said, "Wii?"

TGIF

because Thursday wasn't so good. Sarah went missing after school.

She was first discovered missing by the school bus driver who had been waiting for her in order to set off. School was alerted, I was alerted, my parents got alerted since they happened to be over at our place and school called there.

Half an hour of a lot of calling and messaging back and forth, keeping Sean updated and waiting for further updates and general high tension later, the school was able to tell me that she had been located at a childcare centre with another classmate.

This place is one kilometre and two main roads away from school! The two primary 1 girls had walked there all by themselves - that's like walking down the entire Orchard Rd from CK Tang to Centrepoint! This was the classmate's regular after-school-care place, but her parents normally took her there, and they too couldn't find her when they first went to school to take her. It was the centre who called the school to say that their ward had brought a friend along. I'm thankful they had the sense to report the appearance of a school kid who evidently was not on her usual way home.

So, both girls were brought back to school by the other girl's parents to give an explanation of what they were up to, and Sean went to school to get Sarah home since the school bus couldn't wait anymore and had left long ago.

Anyway. We didn't stop nagging until she went to bed. Even now, I still can't stop thinking about how she is once more the target of a more dominating child. Her classmate was the one who asked her to go with her, who pulled her to leave by another school gate, and even made Sarah carry her school bag for her along that one kilometre stretch! And this girl isn't even one of her usual friends. And Sarah, being the compliant, helpful child that she is, simply did as that girl told.

I don't think we'll be forgetting this in a hurry.

Home Alone

That's me, sort of. Consuelo's gone to the Philippines for 3 weeks so I'm on leave covering her at home. At work I'm covering absent partners or associates on a daily basis. Sometimes it feels almost as if I'm even covering myself while the real me's living in some other world out there.

It's been one big chuck fest so far. I have what I call a "best friend" hanging from a rail in the kitchen. It's a big Duty-Free plastic bag that's been helping me lug out countless bagloads of stuff to the common rubbish chute. A sturdy, silent, generous-sized best friend. Two years' worth of accumulated Happy Meal toys, kiddy drawings, done-ded sticker albums and crazy general whatnot that have added a ton of useless floor loading to our little flat are now finito. They make a great, satisfying noise clanging down seventeen floors worth of chute space.

The 3 big kids have been and will be going to stay over at my parents' place, coming back when Sarah has a ballet lesson or two. This saves me a lot of work, and we're thankful for the help. The quiet is very restful, but we're always glad to have them with us again. It's also holiday season so Sean has a good number of days at home particularly when the kids are back, so we're all managing to stay alive and fed and clean.

Rachel stays home. She naps beautifully (and longly) in her cot and we don't want to disrupt that. It's wonderful having gotten the hang of her daily routine. She responds so cheerfully and readily when all her needs are timely met, it feels almost criminal when we have to all go out and there's any disruption. Of which there've been several, given the festive season, but she's been sweetly accommodating of all those blips in her neat little baby life. She's also grown rather sticky to me. I foresee tears when I have to go back to work. Mine, not hers.

My Favourite Flower

Some mornings on my way to work, I find freshly shed blossoms under a frangipani tree along the way. I gather some of the best ones and arrange them at the base of my monitor.

I once also left a cluster on my secretary's desk, thinking that she'd be pleased to find them when she got to work. Shortly after she arrived, she came in to my room, looking a little worried and, I thought, scared! I asked her if everything was alright. She asked me if I was the one who had placed the flowers on her desk. I said yes. Visibly relieved, she told me that it gave her a turn to see them because, apparently, according to custom, these are flowers of DEATH and she thought it was a sign for her! Yikes.

Anyway, this morning, among an abundance of fallen ones on the grass, I picked up a particular bloom that you see on the right. In all my life admiring the frangipani, some 30 years now, this is the first time I've come across a six-petalled one. It's an anomaly, a genetic mutation, that makes it different from all the other perfectly formed flowers. I couldn't help thinking of Rachel. I showed it to another colleague and she said it was even more beautiful than the others, the way the overlap in the petals showed up more distinctly.

I saw only its difference, she saw its own perfection. I think it's a sign for me.

Mouth Disease

That's what I call it, since they're not getting any hand or foot blisters. Herpangina sounds so awful! The backs of their little throats are still red and ulcerated (say, "AHH!!"), and they're taking it in turn to start out with high fever that warms down to normal temperature in two or three days. Sophie first, then Sarah and Rachel, and finally Matt.

Very thankfully so far, the big ones are still perfectly able to watch too much TV, fight over a toy/game/thing/whatever, run around yelling and chasing each other (for that toy/game/thing/whatever), and generally carry on with normal life, including sleep. Baby's sleep is another story though, I'll save that for another time.

They're managing to eat soft foods like porridge and have no problems with drink. I feel quite sorry for them as the ulcers look horribly painful. Sophie sometimes cries about eating. But she cries only if we don't let her have her potato chips, which she continues to wolf down. Don't ask me how!

"My father" by Sarah S

My father's name
is Sean. he is 34 years
old. he does not have
an occupation. his favourite
food is chips. his hobby
is watching tV. I love him
because he loves me too.

Magic Zzzz

Just a note that, with a lot of patience and gentle persuasion from our dear Consuelo, Rachel has actually gone from "cannot nap anywhere except in arms" to "just prone her down in the cot when drowsy, pacifier-in-mouth and hanky-in-hand". Phew.

La Dolce Vita

For a while there I didn't think I could ever be happy again. Which was a sad reflection on the state of my faith of course. But it's amazing what time (and God) can do. I can truly smile again and just enjoy every day we are blessed with, especially this unexpectedly and wonderfully relaxing and refreshing exam period. And I mean my own exams which will (unfortunately) be done by 8pm tonight.

Because I'm officially supposed to be studying, there's no pressure to "spend time with the kids!!" like when I'm on annual leave. I drift in and out of my room as I please, feeding Rachel when it's time, picking up the girls from their school bus drop-off if I feel like it (which I do), and generally having absolutely no "mommy" stress. Study for exam? Oh, ya, that. Sure, I study, and I get butterflies before the papers, but that's like a grain of sand compared to the hopper-load when it comes to general parenting, and the ten tons that fell on us when Rachel was diagnosed.

For now, very thankfully, our curly-headed little 5+month-old is developing like any other (normal) baby. She's a pro at rolling over and over (to the left, to the left), brings everything to mouth including her toes, loves standing and jumping on her sturdy little café au lait spotted legs, with support of course. She's still nursing, but also walloping cereal, and coos and smiles and chuckles. We have all grown used to her unusual appearance with the enlarged right eye part and brown-patchy right side of her face, and the glaucoma treatment is currently merely a matter of eye drops morning and bedtime.

Deep sigh. Not one of resignation, but contentment. Life is so short and full of sorrow, but even fuller of joy and peace. As the Hokkien saying goes, "Want to cry, want to laugh, the sow accidentally pees."

Not-nice Ribena

Overheard, Sarah telling her grandmother:

"Mah-mah, do you know how to make not-nice Ribena?
First, you pour some Ribena.
Then, you add water until it's just nice.
Then, you keep adding more and more water."

Dogs and Frogs

The kids have a penchant for asking for the same song over and over again in the car.

Sophie was doing this one day when her current favourite ended and she immediately asked, "Daddy, please may I have 'Hot Jumping Sausage'?"

After our laughter had died down, Sean told Sophie the proper name of the song. Trying again, she said, "Daddy, please may I have 'King of Rocks'?"

More peals of laughter from the two older ones. I took matters into my own hands, slowly telling her each word of the title.

Sophie said, very carefully, "Daddy, please may I have 'King, and, Rock, of, Roll'?"

And they all join in loudly at the chorus, Sarah especially liking to sing, "Al, ber, TURKEY!"

No prizes for guessing the correct song title and first line of the chorus!

Sorry?

"Mummy, Sophie beat me! She beat my back!"

"Sophie, did you beat jie jie? You don't beat jie jie! Say 'sorry'!"

Sophie's reply: "I said 'sorry' when I was beating her!"