Stand in the Corner

This is how we've been standing with Vera on a daily basis. It is not the correct position - as you can see, her butt juts out and she is hanging onto our hands like they were crutches.

This is a better position for Vera. Her teacher Jo gave me the idea to put her up against the wall to stand. This way she can learn to bear weight on her legs correctly.

I feel we need a stander for Vera, and will be seeking some advice from her physiotherapist.

I'm also trying out sitting her against the wall. It helps her tuck her chin in and keep her head down.

Back To School

After a relatively long hiatus, Vera went back to school today. Good thing she did not wake up last night, which guarantees a fairly good day ahead.


She was extremely alert, and excited, probably too excited, so she got tired out and cranky. But overall, she enjoyed the session - I can tell from her roving eyes.

She sat unassisted on the mat for the first time in class. I am so proud of her.

Babysitter

My 90-year-old granny tires easily nowadays and visits us less frequently. She's stayed over the past few days, and it's so wonderful seeing her with her great grandchildren. I think playing with them tires her out more than usual, in a happy way though. Oh how I wish she could be with us for much much longer.

Pushing Up

Vera's hands have become stronger. She is now about to push her body up until they are fully straightened.

Through weight management, we have kept her weight the same while she grows in length. She was off the charts for a while, but now she is currently at 100th percentile on the Trisomy 18 weight chart - 25lbs at 3yrs 3mths. I believe this has enabled her to grow out nicely, and also helped her remain active and bear her own weight more comfortably.

Vera at her smiley best.

Encounters At The Playground

I can tell how society views children like Vera just by bringing her to the playground.

Some kids can be mean.

A 5-year-old boy comes right up and laughs in her face.

"No laughing," I chided him defensively. "If you want to laugh, don't come near here."

He does the same to another special needs boy with cross-eyes, about his age, who also happened to be at the playground.

Two other bigger children, both sisters, come up to Vera and said, "She looks so special". Seeing that they were friendly, I proceeded to tell them about the miracles and obstacles Vera had overcome.

They were filled with awe.

One of them asked their mother to come see.

The mother took one look at Vera and said, "Aiyoh, why like that?" Then hurried her girls along.

Her daughter looked at me and said, "Sorry, auntie."

The girl actually apologised to me on her mother's behalf.

We may be a so-called first-world economy, but alas, no way are we near first-world standards in our attitudes towards those who are different from the norm.

Where I live, some people hurry into lifts and close the doors like they are hitting the panic button. They don't have time to wait for others.

Able-bodied people jostle for the lift with those in prams and wheelchairs, instead of taking the stairs.

It saddens me sometimes.

Beautiful Baby Ruth

Look at those eyes. So wide and alert.

This is baby Ruth. Another Singaporean baby born with Trisomy 18.

Another fighter who, despite a hole in her heart, and numerous hospital admissions and surgery, has survived for 7 months now.

Her parents are even more amazing. They learnt about her condition at 21 weeks in utero, and bravely chose to give her a shot at life, and let HER decide how long SHE wanted to live. It is the ultimate respect for life. And truly unconditional love.

From a birthweight of 2.1kg (Vera was 1.9kg), baby Ruth is now 5kg. It is the work of the wonderful invention of tube-feeding, impeccable nursing care, doctors and surgeons who go the extra mile, lots of LOVE and a higher power. And of course, Ruth's will to live.

As of now, she is still fighting for her life, awaiting heart surgery.

Please pray for this little baby.

Survival Statistics

When Vera was about 6 months old, I came across this piece of research findings on survival of Trisomy 18 cases in Japan.

The sentence in bold was what we hung on to:

Abstract

"The prognosis of trisomy 18 is lethal, but recently some long-term survival cases have been recognized. We report here the mortality rate of trisomy 18 based on our hospital data and sporadically published reports in Japan. We collected the 7 previously published reports of mortality and 31 cases from our hospital data with trisomy 18. Our data pool comprised a total of 179 cases of trisomy 18 from 8 institutions. The mortality rates within 24 hours, 7, 28, 60, 180, and 365 days from birth were 14.84% (19/128), 31.01% (40/129), 56.25% (72/128), 64.08% (66/103), 82.17% (106/129), and 90.90% (140/154), respectively. Fourteen of the 154 patients (9.09%) survived for more than 1 year. The Kaplan-Meier survival curves from 78 patients of 5 institutes suggest that trisomy 18 children who have survived over 7 months after birth may have a high probability of long-term survival. We should recognize not only that about 50% of infants with trisomy 18 die within 1 month after birth, but also that about 10% of patients survive over 1 year in Japan. These findings comprise Asia's first clinical statistics concerning trisomy 18, in which the data were collected from multiple institutions. This evidence is valuable in order to perform genetic counseling concerning the natural history of trisomy 18 not only in Japan but also in other countries."

Crew Cut

Vera perspires a lot when she sleeps. This is because she takes more effort to breathe.

The mask headgear adds to the heat. There's usually a pool of sweat on the sheets where her head is.

So I had her hair cut really short this time. Summer is upon us, and the heat will just get worse.

I hesitated about her looking like a boy, and people in the park now ask if I have two boys. But you know, Vera's comfort over-rides everything.

Lazy

I'm sorry I've been lazy with the blogging.

I figured that whenever I post that Vera is doing well, our lives "get interesting" again. So I thought I'd lie low and enjoy the peace for a while. It's June, and for the first time in 2011, we're back to "walking" mode. We'd been "running" for 6 months.

Because of that, every day Vera wakes up well fills me with such joy. It is enough just for her to BE well! She doesn't need to do anything more, really.

The little girl thinks otherwise.

She is intent on crunching her stomach muscles to get her back off the backrest as shown.


She's a determined little one.

Thanks for checking in on us. More to share soon.

P.S. The good news is that she's recovered from the mucus such that Dr D says she doesn't have to be put on Glycopyrrolate. We are so thankful.

Yoga Babe

Our little friend has been practising bringing her right leg up to her chest by herself. We helped her with the other leg to get her into this pose.

Doing our best to keep her flexible!

Visit to Grandma's

We hardly go out as a family nowadays as Vera is difficult to manage outside for long. But my grandma wanted to see her and so we brought her to visit.

Age is surely catching up with her - and she complains of tiredness and giddyness more often now. She is 90 years old.

I think we have to bring the kids to visit more often.

A Tender Touch

It's been a while since I've posted, simply because Vera continues to struggle with mucus and test our endurance in managing it.

As long as this continues, she'll be less than happy and fusses most of the time.

Yet draggy days still hold some special moments.

On one of my park walks with Vera, we encountered a young Burmese woman, working in Singapore as a domestic helper.

When she saw Vera, she automatically held her hand in hers and started stroking it with such tenderness. I was taken aback at the show of love from a complete stranger. In Singapore, such openness in affection between strangers is rare. We have lots to learn from our friends from lesser developed countries about compassion.

She Continues To Improve

Step by step, she improves. First, 2 hands on the table. Now, 2 hands on her lap. I believe she'll raise those hands one day.

Mickey Feedback 1

Five months after we've been on the Mickey and I must say I'm so glad we made the switch.

The cons of the Mickey proved to be unfounded:

1) The protrusion does not interfere with Vera rolling onto her tummy;

2) It hasn't popped out on us, but we got a new one at 4 months, because some suspension medication caused some leakage (but nothing as flowing as the Bard)

3) The length of the tubing is alright for feeding, we just watch for her hands.

Changing it was such a breeze - Vera didn't even feel a thing. Mickey wins hands down!

How To Live

Some time ago I watched a documentary about the separation of a pair of 3-year-old conjoined twins - joined at the head.

Doctors had initially predicted at birth they would only live for weeks, but they defied the odds. Learning even to walk, one in front of the other.

Their mother told the interviewer:

"They want to live. They want to show us...how to live."

Back Home

Turns out it's a viral infection and not, thank goodness, Pneumonia.

Sick of lying down all the time, Vera tries to
get some workout done in the hospital bed.

After admitting her last Thursday upon a fever spike and much suctioning and breathing treatment, we're home on Day 6.

The good news:

1) She's finally got her flu jab - I'm so looking forward to a break from infection!
2) Doctors have finally ordered mucus medication for her - it has to be imported specially from the States and will take two weeks to arrive. (It's called Glycopyrrolate - anyone has used this before?)
3) She's finally strong enough to pull herself up just gripping onto our fingers!

Looking forward to sunny days ahead : )

Sick Again

Even before her secretions have a chance to fully go away, they're back in full force again. Yet another bout of infection is upon her.

I feel defeated. Ready to give up.

I was so looking forward to a suctioning break (I have been suctioning since February.)

There goes my plans to (finally) start some work, or take up a course. Maybe those have to be shelved for good.

We're on standby for fever now. I feel like a boxer, knocked down before I can stand up again.

This Trisomy journey is so so trying.

3 Years Old: Developmental Update

When Vera turned three, she emerged from her cocoon and became a butterfly.

We thought her long-running illnesses would set her back in her development. But the girl has proven us wrong and miraculously made strides in various areas, which really baffles us!

Here's what she's been up to:

1) Improved grip - Her fingers have gotten stronger. Previously, she would hold the Ark Probe to her mouth only if I held it in her hand. Now, she refuses to let go of it, and 'brushes' her teeth rigorously with it for up to 10 minutes. In fact, she will resist if I try to pry the Ark Probe from her fingers!

2) Sitting - She is now able to support herself with her hands and sit independently for about 5 minutes. Her head tilts back less now.

3) Tripod Sitting - She is now very steady in tripod position and can do it for about 10-15 minutes. (Longer if she's entertained.)

4) Pulling up - This really amazes me. Her forearms have gotten stronger. Nowadays, she pulls herself up into a sitting position once you hold her hands! She's so determined to get up, and so pleased when she's done it. We've been doing this with her every day now, and I bet soon she'll be able to pull up just by gripping our fingers.

5) Extremely 'Talkative' - She turned three and found her voice. Nowadays, she will complain throughout the evening non-stop. More if her nose is stuffed with mucus.

It is said that the first 3 years are when they make the most progress. We are seeing the rewards of our consistent efforts at therapy, and I'm happy she's improved this much during this time.

I look at my chubby, cheesy smiley pumpkin and feel so thankful to have her as she is.

Healing

The medication seems to have controlled the outbreak. What a relief. Vera is bored from being quarantined in her room, so we brought her to the newly-opened Punggol Riverside Promenade for some fresh air.

Daen goes home (from his park visit) for dinner, and it's Vera's turn.

How she loves being outdoors now. None of the incessant complaining noises (oh yes she makes A LOT of noise now when no one keeps her company).

And how I love bringing her here. It's great to have a river with grassland and birds just minutes' walk from where we live.

Chicken Pox

The pus-filled blister on her face appeared overnight. We thought it was caused by her mask. But the next day, more rash spots appeared on her back.


We happened to have a planned visit to the pediatrician, and she felt it may be early chicken pox. In normal kids, she would have let them fight the virus without medication. But as Vera's immune system is weak, she gave her anti-viral medication to limit the severity of the outbreak.

We should have given Vera the vaccination at 15months, but again, we dropped the ball and now she's caught it.

As pox is contagious, she may have spread it to Daen, as the incubation period is 3 weeks' prior to the appearance of spots. And yes, they have been playing together and he's been touching her mouth and face.

Vera's now quarantined in her room. Daen will not see his sister in the next 2 weeks. Separating them is the only thing we can do at this point.

Another setback, just when we were planning to get her back to school.

Daen Is One

Vera's still dealing with a runny nose, but we decided she couldn't miss her brother's first birthday. So she made a quick special appearance. Daen was dressed in the tiger suit bought by his Godma.

Grandma shows him the jungle animals.

He got a safari-themed cake, and a jungle-themed party courtesy of his Mai Mai, our very own David Tutera.

Daen is born in the year of the Tiger.

In keeping with Chinese tradition, he was asked to crawl towards and pick one of four items. The one he chooses will reveal what he is likely to be in the future (supposedly)

1) Ruler - Engineer
2) Book - Academic
3) Abacus - Accountant
4) Chicken wing - Chef
He chose the abacus. (A-hah, a future CFO!)

We had a special pre-birthday visit from his Godma and kids as well, and he thoroughly enjoyed his new airplane car.

It's been a blast staying home with Daen - he's been such a good, easy baby that it's so much fun looking after him. Hopefully that continues!

Feet Reinforcements

Foot Braces - To support her inward-bending feet so they can
develop more normally. The orthotist says the shoes are less important now
as the AFOs are providing the all-round support for the feet.

Standing Time - I left her for a split second to take this shot.

She still needs to be held at the pelvis.

Taking a break - "I'm tired! Mommy is working me so hard..."
Her head control has improved and she can sit in her armchair by herself!

Better or not?

 

I'm better, but Vera is not.

Two weeks after coming home from hospital and we're still suctioning 3 hourly. We should be back to no suctioning days by now. We might have to get back to hospital and Xray to check if the infection is still in her lungs.

The strange thing is, Vera seems to have become more active after the pneumonia bout.

I thought she'd be weak and mostly stationary, but the girl is back to doing her turns as if she never had the episode.

We got her some AFOs (foot braces) and she's been happily working out in them as well.

This is the Vera I like. Not the one who has started to scream in anger during suctioning.

Mummy is Down

Vera came home 4 days ago, and I fell sick right after.

High fever and a throat that's so inflamed it's bleeding.

This is the second time I've fallen sick after a Vera-in-hospital episode. I guess being exposed to the germy environment plus a lowered immunity from lack of rest makes it inevitable.

There's a flu epidemic in Singapore now, and it shows no signs of abating. Once everyone is well, we're gonna get vaccinated. We just can't afford the strain on so many caregivers with another pneumonia bout like this.

ResMed Mask

This is the mask we eventually got for Vera - the ResMed Mirage Micro adult nasal mask.

The hospital one was just too large for her face, and I didn't like the heaviness of the gel.

There are so many factors to consider when choosing a mask.

a) It must be lightweight.
b) It must not block her line of vision.
c) It must have low leakage.
d) It must have just the right coverage over nose and mouth.
e) It must be easy to fasten and unfasten.
f) It must be easy to wash.
g) It must give us a good view of her nostrils and mouth.

The Mirage Micro has all the above. Best of all, it has the same thin, soft silicone lining as her old mask, which made it a clear choice. Vera took to the mask so well.

I feel so relieved to have found it. So many nights I've been worrying over what could possibly be as good as the Maskmedic but bigger.

Once again, answers reveal themselves, just when we need them.

The Home Stretch

We're on the home stretch. And it's been a stretch alright.

Two weeks of mind-numbing diaper-changing and we're still at it.

Two weeks of suctioning and we're still at it.

Two weeks of fighting us and she's still at it.

We're spent and so is she. But I see some smiles today, and it looks like the worst is over. We're likely to discharge tomorrow and continue managing the tail end of the infection at home. (No point staying longer than necessary and risk picking up new bugs.)

I'm grateful for all the help from our loved ones to care for Daen in my absence. Without which we would not have been able to give Vera round-the-clock attention.

With a young child on a biPAP who can't speak for herself, it is just impossible to leave her alone in hospital. Unless she has one-to-one nursing care (as in PICU), not in an 8-bedder.

It may be tiring but it's still manageable compared to the same episode last year when I was 7 months pregnant. So, I'm not complaining.

I feel like I've been waiting to exhale for the last two weeks. Now that Vera is breathing better, I breathe a lot easier as well.

Full Face Mask

This gigantic mask is going to be Vera's lifesaver.

It's a full face one, meaning it covers both her mouth and nose. It looks similar to the first one she tried 2 years ago.

Her current mask only covers her nose. For the air pressure to enter her lungs, Vera's mouth has to be closed.

The problem is, Vera sleeps with her mouth open. So whatever air pressure the BiPAP is giving is escaping through her mouth. And because she breathe mostly through her mouth instead of her nose, the machine is not detecting those 'mouth breaths' and mistakenly thinks that she only take very few 'nose breaths'. It therefore does not 'kick in' as much as required, and is under-supporting her.

To illustrate more clearly, previously Vera was taking 30 breaths/min. But the machine was only supporting 10 of those breaths. Now she's taking 34 breaths/min and the machine is supporting 30 of those breaths. It's a closer match.

Finally, ANSWERS to her sleep perspiration and fitful sleep.

It's not the machine, it's the mask!

With the full face mask, her sats improve. It's clear that this is what she needs. Managing the mask - positioning, leakage, dealing with condensation, dry eyes, shifts in position are things we have to readjust to.

But it's Vera who has the most adapting to do. From a weightless silicone mask, she now finds a huge hard plastic THING on her face. She can no longer touch her mouth. She taps the plastic, still trying to figure out what it is.

As there is no full face mask designed for kids (correct me if I'm wrong), we have to look for an adult nasal mask, and hope it fits her nose and mouth. The hospital offered us the one in the picture from Respirionics, but we are searching for others to see what fits Vera best.

New stuff to get used to again. Just when I was looking forward to going back to cruise mode.

Vera, you sure keep us on our toes all the time.

Little D

When Vera was warded for Pneumonia last January, in the bed adjacent to hers was Little D. A puny little girl whom we learnt had problems gaining weight. She was 3 years older than Vera, but smaller than her.

Time time, Vera is warded for Pneumonia again. Coincidentally, in the bed opposite hers is Little D again. Only that she ain't little no more. In just a year, she's overtaken Vera in size. She even has chubby cheeks now. I'm not sure what she's in for, but one thing hasn't changed.

Little D does not have any visitors.

I hear that she has a condition that causes water retention and needs to walk and exercise to help clear the fluids. Without someone around for her, the task falls on the nurses, who are already so busy with their duties.

Over the last 7 days, I've watched her eyelids increasingly swell till they're bulging, threatening to purse her eyes shut.

At first she could still peep through one eye. I brought her a board book. She smiled and flipped the pages delightedly.

Today, she could barely track. So I gave her a tactile musical toy, and she clung to it, pressing the buttons.

The nurses, cleaners, and other parents come to her and do what little they can to engage her. But when all are busy, she slumps in her stroller, the darkness closing in on her.

It makes me so sad. Here we are doing complete 24-hour shifts for Vera, and opposite her is the exact opposite.

WHERE ARE HER NEXT OF KIN? Not a single one? An uncle, aunt, grandparent?

What's the point of doctors and nurses trying so hard to help her, when her loved ones don't even pay a visit?

If they don't come see her quick, I'm afraid she'll soon not be able to see them either.

The Hospital That Cares

You know your child is with the right hospital when...

1) The Head of Paediatrics squats to explain to you cos you're seated carrying your child.
2) When you say the corridor ceiling light is glaring for your child, they get someone to take a bulb out.
3) Your child gets a cake on their birthday.
4) The doctor tells you what they are doing is only 10% and you are doing 100%.
5) You encounter many conscientious, no-attitude nurses who are serious about their jobs.
6) A nurse suctions your child even though she's knocked off half an hour ago, because you asked.

National University Hospital rocks!

This Tri-er is Three!

The lovely balloons say it all.

It was a good day - a cake from the hospital, a young doctor drops in to wish her 'Happy Birthday' which was nice, Auntie Jamine and my aunt J and her teachers from school visit.

We are still not on the road to recovery, and just have to be patient and hope for the tide to turn soon.

This evening while I was cradling her, she looked into my eyes and started patting me on the chest. As if saying, 'Good job, Mummy."

What a welcome sign that was after 8 days of rather monotonous nursing care.

Thank you for all the birthday wishes.

Three cheers for you, Vera, for coming this far - hip hip hooray, Hip Hip Hooray, HIP HIP HOORAY!

Spiking a Fever

What had been a low grade fever for the past few days spiked to 39.8 deg C this evening.

It prompted the medical team to fix a plug on her to administer stronger antibiotics and also to conduct more tests. So far we know it isn't pneumonia, and her blood count is normal. We still do not know what the nature of the infection is.

Meanwhile, there are no smiles and all efforts at cajoling her fail. All she does is writhe in bed or sleep for short periods from sheer tiredness post-suctioning. And poop each time she coughs due to bowel incontinence.

It's unlikely she'll be home for her birthday.

P.S. Just when things were improving for Vera physio-wise, we switch to the opposite direction. One minute up, next minute down. It's hard to prevent my mood from swinging like this Trisomy journey.

Turning Three...In Hospital

Two days shy of Vera's 3rd Birthday and she's in hospital.

We'd been suctioning at home for 5 days and could not keep up with her secretions. Usually we manage at home if there isn't a fever. But this time there was, so to hospital we go. Just to be safe should things take a turn for the worse.

Her doc said we could bring her in 2 days later if she wasn't any better, but we had to go through emergency. Another round of repeating her story, just to get her warded. And on a Sunday. I thought it's unlikely we'll do any better at home, so we admitted on the spot.

Having Vera in hospital is good. Any changes in her condition and the team can respond with appropriate medication there and then. And her sats are being monitored (we don't have an oximeter at home).

But it is more tiring for all of us. I do 11 hours in the day, Beth does the night shift. With Vera so active and hooked onto the bipap, you just can't leave her unmonitored for long.

And with Diarrhea in full swing now with the start of anti-biotics (okay it's not as bad this time with the new anti-biotic Unasyn we're trying out), but still, enough to make me feel like an automated diaper-changing machine.

Vera is extremely tired from laboured breathing, sleep deprivation, frequent but necessary suctioning, but not tired enough to stop fighting us. I most dislike "hospital duty". I dislike struggling with Vera the entire day. I dislike seeing her bum bleed. I wish someone would take my place. But yet, I know I need to be there to work with the team to get her better fast.

Vera spent her second birthday in hospital. I'm so hoping she'll be home for her third.

Oral Hygiene: Going Overboard

Once in a while, I get desperate about Vera's oral hygiene. Or lack of it.

There are yellow patches in between her teeth. Plaque. I smell her bad breath and see a yellow-caked tongue. Then I get carried away.

The last time, I whipped out the toothette (oral swab) and started cleaning away. Her secretions increased significantly, a sign of micro-aspiration*. Lots of suctioning ensued.

Yesterday, I whipped out the finger brush and even put toothpaste on it. She must have swallowed the bubbly and micro-aspirated again. She'll be dealing with lots of phlegm in the coming days.

You'd think that I'd learn but I don't know why I don't.

*Micro-aspiration means some fluid gets into the lungs, and this causes more phlegm to be produced by the body.
p.s. Anyone has any ideas? She refuses Spiffies toothwipes, and clamps down on our finger so hard it's painful even if we're wearing the rubbery finger brush.

Turning Three

In the blink of an eye, Vera will be turning three.

Oh my Three.

As in One, Two, Three Go!

As if, once she hits the mark, there's no stopping her.

Unlike when she turned two, I've been reflecting on her life a lot more this time.

The first year
We were like on a 'Cruise-to-Nowhere'. We didn't know where the destination was. We were mostly alone in our cabin with Vera. She grew amazingly well, never fell sick once, it was good.

The second year
The seas got rough. Vera was in and out of hospital, and we struggled to learn how to cope with her respiratory issues. As the boat rocked, me and my bulging tummy strove to balance between preparing for Daen's birth, and managing Vera. More people come to know about, and love her, and our world expands again. Having Beth to care for her was a blessing.

The third year
Daen comes into our lives and things reorder again. In a happy way. More people come into our lives thanks to him and he had been good for Vera. We are more confident of handling her illnesses with suctioning; she had a minor surgery (adenoids & tonsils) with major improvements to her well-being; with that has come improvements to her physical abilities - sitting, rolling, turning, standing.

As her third year draws to an end, it does seem like we've reached some sort of cruise mode. Daen's now up on his feet and much easier to care for, freeing up therapy time for Vera.

What a journey it has been and will continue to be.

Vera is where she is today because of all the angels sent her way:

The doctors and surgeons - whose deft hands gave her a way to eat, a beautiful smile, better breathing;
Her milk mommies - who spent hours expressing milk for her for months;
Her Mai Mai (aunt) - who looked after her for 3 months after birth;
Her wonderful grandma and greatgrandma and grandaunt - showing that age is just a number when it comes to love;
Her teachers and therapists - who work hard at helping her improve
Her caregiver - who gives up sleep night after night so Vera would get more of it.
Oh, and not forgetting the online angels near and far who have kept us in your prayers - Thank You.

We live in awe every day.

p.s. Till today, we still get comments from new people reading Vera's blog. It always brightens my day to 'meet' new people wanting to learn more about her life. (Of course, our 'old' friends - you know who you are : ) - the ones who never fail to cheer us up with encouraging comments are always treasured!)

The Less Abled

Some people prefer to, or find it easier, to ignore Vera.

After all, unlike a bouncy, chatty toddler who clambers all over you wanting to play, Vera just well, sits there.

She can't greet you if you don't bother to greet her.

She can't say charming things to illicit exclamations like 'Oh you clever girl!'

And let's face it, she isn't your 'pretty pig-tailed girl'.

All in all, not much incentive to pay her any attention. Why bother talking to her since she won't understand anything you're saying?

Then there are those who are genuinely touched and SEE Vera beyond what she is. They come up to her and talk with a tenderness in their voice.

You can tell so much about a person by how they treat the less abled.

How Vera Laughs

Can Vera laugh? Yes.

She rarely does, so it's like striking gold. The last time she laughed was 8 months ago. Yes. 8 months.

This is what it sounds like.

The little porky responds so spontaneously to social interaction. It is clear that she knows we are trying to reach out to her. It is obvious that she enjoys it. Just like any normal kid.

When she vocalises her delight, she fills my heart with immeasurable joy.

This Trisomy 18 babe whom isn't even supposed to be alive, is sitting here giggling at my antics. The miracle of it isn't lost on me.

She is the one smiling, but we are the ones learning the meaning of true happiness.

Expecting Adam

I have just raced through the book 'Expecting Adam' by Martha Beck in one sitting.

Uncharacteristically putting aside 'Therapy Time With Vera' and Daen's cries to finish it.

As I have found with most books that truly grab me by the collar, no one introduced me to it.

It was stumbled upon.

I was on a usual library round gathering boardbooks for Daen.

But one day, for no reason at all, I thought, 'hmmm, maybe I should read a book about motherhood, read a book for Me'.

One of them was called 'I Love Being A Mom'.

After a quick read through the collection of mothers' anecdotes, one essay stood out: It was by a mother recounting the experience of expecting a Down Syndrome baby. The twist was that both she and her husband were Harvard graduates. Read: Highly intellectually driven people being told their son would be 'retarded' (the word she uses).

Often times I've scouted for books on special needs parenting, hoping to find something to identify with, to gain some sort of catharsis for the journey I had gone through with Vera's birth, but the search never turned up anything close.

And now, after almost 3 years, I find a book that speaks about a time which I still have yet to fully talk about - when I was expecting Vera.

I opened the book, but in fact, it has opened me.

From it has sprung a reservoir of new thoughts and realisations about having Vera in my life.

Suddenly, the 'loose ends' - the part of Vera's story that has so far been in cold storage, all dash and cram themselves into the short term memory box of my brain.

I found myself with a tightness in the chest right from the start of the book. Midway through, it felt increasingly like I couldn't breathe. Reliving the emotions of the prenatal period was getting too much to bear. Then, once I got to the part when the diagnosis was revealed to the parents, the catharsis began. I shall not spoil the story for anyone, only to say that there was a line in the book that hit me with a boxing glove and a tequila shot of tears.

I've been anticipating, 'Expecting Adam' for a long time coming.

Happy Feet

You know the penguin movie 'Happy Feet'? Looks like Vera's got them. She's been moving her legs more in the last 2 months, entertaining herself with them.

Yet another positive outcome of the adenoid and tonsil removal surgery!

No More A Baby

10 months now

All too soon, Daen's a baby no more.

I had been anxious to get him used to taking his bottle and falling asleep by himself. And now that he can, I miss feeding him to sleep in my arms.

Last night I tried to do so and he refused, preferring the comfort of his bed now. The irony!

One day he's 5 months, the next he's 10.

With Vera, not much changes day to day, and you can enjoy her at the stage she's in tomorrow and the day after.

With Daen, blink and you'll miss it.

His Name is Today
“Many of the things we need can wait.
The child cannot.
Right now is the time his bones are being formed,
his blood is being made, and his senses are being developed.
To him we cannot answer 'Tomorrow.'
His name is 'Today.'"
- Gabriela Mistral, Chilean Poet (1889-1957)

How We See Vera

One time, Ian and I caught Vera in the mirror and were surprised by how disproportional her eyes looked.

Her reflection

"Why does her right eye look so small?"

Well, because they are. Mirrors don't lie.

"That's probably how others see her," Ian said. With one significantly smaller cross-eye.

Amazingly, our parent-tinted lenses have compensated for the difference in our brain: we've been rewired to see less of the disparity.

Love, has certainly blinded us to the appearance of her many other physical shortcomings.

Do I see "Abnormal" in her low-set ears? No. Her lop-sided mouth? Her extra digit? Her rocker-bottom feet? Nope.

To me, these are what make Vera VERA. This combination makes her unlike any other toddler in the world.

I remember back in the early days when I would shoot poisonous 'what are you lookin' at' arrows at people who glanced at her in the park. Now, I'm too busy getting her gaiters on to bother.

There is a powerful sense of release and freedom when you accept, fully accept the special child you've been given.

Your eyes open and see beauty.

Little Porky, eyes a-gleaming

Bye Bye Stander

"stepping out in style"

"going down, down, down..."

"for some fresh air and greenery"

School's in and the loaned stander has to be returned soon. What a pity, as Vera really enjoyed being on it. From 5 minutes when we first started, she can now take it for 10 minutes. She taps on the metal frame (above) and touches the wheel by herself.

Knowing that it'll be gone soon has got me into "last-minute homework" mode. But it's homework more enjoyable than any I've done as a student!

Vera Loves Signing

Vera is very visual-led.

Although she can hear, nothing's stopping us from using the tool of the hearing-impaired to communicate with her.

And we've found that it turns her on.

Here, my uncle signs to her and she's so tickled. She loves looking at our moving hands. I've had similar response when signing nursery rhymes to her.

I've done up this manual as well of simple daily signs - sleep/bathe/sit etc.


Perhaps one day she'll get what we're trying to say.

Vera Watches Daen

Does Daen know who is 'chea chea' (elder sis in chinese) ? Yes.

Is Vera aware of Daen's presence? Yes.

Do they know how to play together? Not yet.

Does he know how to 'sayang chea chea'? Not yet.

Does he like to climb onto her? Most definitely!

Mouth Closed...Finally!

The beautiful result of Vera's adenoid and tonsil removal is that she can now close her mouth.

In the past, Vera had her mouth open all the time - she was a mouth breather since birth.

These days, she keeps pursing her lips and constantly blows bubbles in and out. Finally, she can play with her saliva!

It's a sign that her nostrils are clear and she is breathing easy.

The "sound" of her silent breathing is absolutely music to my ears.

A Better View

This picture may seem like nothing out of the ordinary, but for me, it has particular significance.

Here, Vera in the upright position of her stroller.

Normals kids take this position from about 6 months. But for Vera, she did not tolerate this position for the longest time. She would arch in protest, or bend like bamboo in it. We always had her one notch down, semi-reclined. Her view would be nothing but high rise and sky.

It was always a rush - through grocery shopping, eating, etc, "before Vera gets uncomfortable" in the pram. She had no interest in the surroundings, and outings weren't much fun for us either.

Now, I guess her increased strength and tone has enabled her to take this position for the length of a walk in the park. It has made the exercise literally a stroll. She can now see people, pets, bicycles, cars, children running around.

It is so wonderful, just to watch her watch the world go by.

Happy New Year 2011

There was a mini New Year Countdown celebration just a stone's throw (less than 100m!) from our apartment. Since the little girl was still wide awake (as always), I brought her down just to catch the fireworks. I hope she enjoyed it, the same way she likes sensory time in school.

This is her second time seeing fireworks. Her 1st time was during the end of 2008.

It was at the edge of the neighboring town, but still good enough to view after a short stroll. May was asleep and I was covering the night shift. Vera was having a string of late nights back then. Instead of continuing to try to rock her to sleep, I decided that it was something she shouldn't miss. No doubt, she seemed more excited at that time.

In case u are wondering, May and Daen were both knocked out by 9pm after his last feed. Too bad. Maybe we'll try harder to wake them up... next year. :-P