Happy 8th Month

I can't even wait till tomorrow to post this. Chubby chubs is 8 months old and as you can see, happier than she's ever been.

Medically, here's the low-down. Her PDA is fully closed, there is however a thicken wall in her heart. Her kidneys are normal. She has started to see through her right eye some. Her blood pressure, which is systemic according to the doc, is higher than usual but borderline high.

Physically, she's not raising her head as much as before, hates sitting on her own, but loves people to play with her. Feeding therapy continues to teach her how to suckle and someday ingest food orally.

Looks like Vera's inching closer to the 1-year mark now. Thanks to all of you - family, friends, wellwishers - all cheering her on on her mini marathon.

Nightmare

Last night, I dreamt that Vera died. I know I shouldn't be talking about such stuff, but this is an honest blog of the good, the bad and the ugly, so.

It was so real. She was like she looked at about 2 months old, still thin and small. We were at the hospital for a routine check and it just happened. I cried like crazy in the dream. I remember regaining composure, then breaking down again. Crying in your dream is very tiring. You can't control or stop it. The only way to get out of a nightmare is if something jolts you out of sleep.

And that was Vera making noise. You can imagine my relief upon seeing her sleeping next to me. Things may be going well for her now, but you know, the dark dreams are never far away.

Walk in the Park 4

We have many parks to cover so here's Punggol Park, a picturesque suburban park with a big pond. Vera however was too sleepy and trying to shield her eyes from the sunlight.

Getting A Manicure

Personalised in-house service available. Comfortable seats. No charges.

One Pull

...and it's out! We found the ng tube, next to the little girl. I think she's going to get much better at this with daily practice.

A “Better” Diagnosis

Someone remarked that she was relieved that Vera has Trisomy 18, rather than something else like Golden Har Syndrome. Relieved because the infant would live much shorter and that would spare us her parents from a long-term burden. Incidentally, I did a check on survivors of Golden Har, and some are well into their 40s.

She also suggested then that if I needed to stop expressing milk, (in case Vera passed away) she could prescribe medication for me to reduce milk production. Now, my baby is still alive. It seemed then that people were helping me plan for when she was not.

At that point of time, I really couldn’t understand the logic behind those statements. Of course, now it’s becoming clear to me that some doctors are really on the other end of the spectrum in their viewpoint.

We’ve just got to find the ones that are on our side.

Low IQ Girl

A harsh title on purpose. Because that's how insensitive a comment from a particular doctor was.

We'd gone to see this doctor to understand if Vera's kidney function could be causing her hypertension.

It was a first visit and she had no background, so I started by saying that Vera was on active management and what's important is that her PDA had closed, her corneas are clearing, she's responding to therapy...and she interrupts by saying:

"What's important is that she will have low IQ. Dr X has gone through this with you so I don't have to explain further."

What??? I couldn't believe my ears. I was on the verge of giving her a piece of my mind, but decided it was not worth my effort. After all, you can tell a 'holier-than-thou' face when you see one and boy, did she have it.

So much for someone like her, who apparently has 'high' IQ. Pity, what poor EQ.

So little Vera, this is what you're up against in this world in the eyes of some people: You've low IQ and that's all that matters.

I've read horror stories about insensitive doctors of other T18 moms, so I guess everyone gets an experience like this.

Well, we know what really matters: Seeing Vera smile, seeing her grow, seeing her in the morning the next day.

The fact that she still exists, is important reason enough.

A Really Good Day

Yesterday was one of those days when you just can't believe your luck. Vera was such an angel. She did not cry even once the entire day. She enjoyed all her feeding and physical therapy and fell asleep real easily. For the first time, she even watched TV sitting in her rocker! Days like this are few are far between, so I really cherish them. Not because it's easier on me, but because it's great to see her contented all the time. Like Ian says, "What a strange day..."

First taste of "food": Although we haven't yet done a swallow study, we have to get her tastebuds stimulated. She seems to like the fruit gel. It's a good start!

Sweat-it-out: Head raising therapy continues. The little girl is working really hard!

Daddy Still Sick

It seems like Ian's taking rather long to recover. It's a good thing I recovered fast. And Vera, though still congested and breathing very noisily, is not been woken up by it intermittently at night.

It's tough when Ian is sick. I can't just pass her over, whenever I get tired out. But hopefully he should be back to normal in a few more days. Plus we've had my mom and aunties over to help out, when I'm at work.

New Seats

At 7kg, Vera isn't light as a newborn anymore. Explains why we need to start getting her used to sitting on her own. The first six months, she wouldn't sit along for more than 5 minutes. Then suddenly today we put her in the blue, under-utilised rocker and she sat for nearly half an hour, happily watching TV and sucking her thumbs! And I could actually be posting this blog while watching her! This is a very VERY good sign.

She still can't sit up straight though. As you can see, her head is still weak and it flops back when she's in the Bumbo chair. That sitting record: 5 minutes.

Next, I couldn't resist buying a breastfeeding pillow that I thought I could use to get her to learn to sit up. Mummy likes it more than Vera (don't you just love the retro print?)

Once she gets used to her new seats, that's when we can give our arms a rest!

Eye Spy

A spot of good news: We suspect the haze in Vera's bad eye (her smaller right) is actually clearing.

There had been no progress for months. So we were only hopeful about her left eye clearing. Well, let's hope the good news gets even better!

All Three Down

...with the flu bug.

After 7 gruelling months of sleepless nights and 24/7 days, Ian finally falls sick. It's a wonder his immune system as held out for so long.

Problem is, I'm sick as well. And Vera too. Ever since her nasal insertion, mucus started to dribble from her nose, and it's become really congested over the last few days. It obstructs her breathing so badly she keeps waking at night. Crying non stop because she really wants to sleep. Her whole nose/throat cavity sounds like it's rumbling or gurgling.

To add to this, she's been retching again. We thought the nasal tube would put an end to this. Not so. We really don't know why.

It's been really trying these few days. She's on medication for the congestion now, but we've yet to see it's effectiveness. Fingers crossed.

Meantime, it's groggy baby, groggy mummy, groggy daddy.

Back To Usual

Vera is not so lax now. Back to her usual hand-sucking self. She's smiling much more again, so it's a relief. She got me worried for a while. This week, we'll be seeing a dietician to get more clarity on her nutritional needs. Her milk intake has reduced, and she doesn't seem to need as much as before. We hope to find out if this is normal. Plus she can't start on semi-solids, so how's she going grow well?

Some therapy updates:
1) Torticollis - With the stretching exercises we're doing, she's turning more easily towards her right side now, her stiffer side. Lots of work still needed though.

2) Feeding Therapy - We're starting to desensitize her mouth using the toothette and to train her to suck on a pacifier. Naturally, she pushes them out at the moment. It's early days. But least we're actively doing something.

Why So Lax?

Vera has been pretty lax lately. She'll be awake, but her limbs are quite flaccid. When I play with her hands, they'll be quite limp. This seems to have coincided with a drop in her milk intake. It seems like she doesn't need as much as before. We can tell because there'll still be milk drawn up through the tube at feeding times.

Is it because she's not getting enough to eat? Because she's not taking semi solid food? Is it because she's overfed and thus feels lethargic? Or because she can't support her own weight? Or is this the first sign of deterioration?

I really don't know.

Ten More Mls

Vera had some little friends come visit today, Children's Day. She was crying so this little boy held up a musical toy to pacify her. We told him he had to hold it till the milk went all the way down. He obediently did, standing motionless, watching intently at the syringe ("Is it going down???")

Children are just so innocently charming.

First Step To Freedom

After months of throwing up due to the tube irritating her throat, it's now OUT OF HER MOUTH. Finally, she can suck her hands and fingers all she wants. Finally, no more constant tape changing each time saliva soaks it up.

We have her Speech Therapist Vasu to thank. He took one look at her and urged us to get her onto NG (nasal gastrostomy) tube without delay. The tube had already caused a ridge to form in her upper palate, like an inverted canyon! That would cause further problems further down the line, like stunt teeth growth.

It was traumatic to watch though. Vera cried her eyes out. Of course, who likes something thrusted up their noses and without warning? With time, she should get more used to it. We hope.

For those who know about my initial aversion to tube insertion, well, here it goes again. Another mental challenge to overcome!

Go Nasal

"Get her onto a nasal feeding tube," was the first thing Vera's Speech Therapist said to us.

Suddenly, it dawned on us. We'd become so used to the oral tube after months that we'd forgotten why it was there in the first place: only because her nostrils were too small at birth. Certainly they must be big enough by now for the feeding tube.

Imagine what that would mean: No more Vera gagging on the tube, no more vomiting, no more cleaning, washing clothes and sheets every day. Just Vera sucking away at her hands with relish.

Can't wait to get her 'nose job' done.

Normal vs Special

The irony of these two words have always intrigued me.

For kids that are born so perfect, so wonderfully made, they say they are just 'Normal'. How can that be? They are way way beyond special, because so much has to go right for them to be born that way.

And for kids whom are mentally or physically handicapped, people are embarrassed to call them as such. So they use words like 'Special' as an euphemism. But the truth is, these kids ARE special, in every sense of the word. Firstly, something is special when it is rare - and such kids are rare. Secondly, these kids are special because they fight harder than any other to do 'normal' things.

So there. To all the parents with 'Normal' kids. Please treat them extra extra special.

She’s A Great Grandma

…literally. She’s great at calming Vera and even putting her to sleep. After all, she’s raised 5 children herself, and has lots of experience with grandkids. When she speaks, Vera pays rapt attention. I believe it’s because this grand 88-year-old dame stayed with me for the last two months of my pregnancy, so Vera heard her voice everyday before she was even born. These things cannot be scientifically proven. You just know them with your heart.

Walk In The Park Pt 3

Vera has park-crazy parents. This is her third park – Changi Beach Park. A quaint, laid-back coastal beach where old bumboats dock. This used to be mommy and daddy’s frequent hangout. Now, it’s with baby in tow!

The Sun Shines

…when Vera smiles. She made our day with a whole lot of it yesterday. There’s just something about a toothless grin that really melts my heart. Every smile says ‘I’m happy to be here with you. I like that thing you do, it tickles me.” No wonder people have more kids. They just can’t get enough of these utterly magical moments.

Enough Sleep

When Vera gets enough sleep, so do we.

That’s what we’ve learnt after months of trial and error. We thought that keeping her from sleeping in the day would tire her out and make her sleep longer in the night. Wrong. She gets more cranky and cries all the way to bedtime.

Now, we try to make sure she gets at least 2-3 naps in the day. It seems that letting her sleep enough in the day, makes falling asleep at night less of a trying affair. She also cries less and smiles more when she’s well rested.

Best of all, she’s slept for 8 straight hours through the night for the last 4 nights! Our first all-night rest since birth. It’s cause for celebration.

The problem is: I still wake up in the middle of the night, like clockwork!

Favourite Pasttime

Finally, finger sucking has begun. From being able to aiming her thumb into her mouth, Vera has progressed to sucking on her fingers whenever she's lying on her side. It's a good sign: it shows that she's exploring her own hands, and able to pacify herself with them.

However, the downside is that the movement shifts the feeding tube, it irritates her throat, and causes her to vomit her milk out. It's painful for me to watch - the little girl is just doing what babies do, and has to put up with the consequences.

Boy, do I hate this feeding tube.

Hold Your Head Up Part II

It's clear she still doesn't like it. We were taught to put a rolled towel underneath, and push her elbows in to help her practice pushing herself up. Clearly, her hands don't have the muscle tone for this yet. She can raise her head once or twice, and then tires. But it's a start. Hopefully, with time, and practice, this gets easier for her.

Vera Has Torticollis

According to the Physical Therapist (PT), Vera has Congenital Muscular Torticollis. This refers to a tightness in one side of her neck muscles. It causes her head to tilt to one side. It's something that can be corrected with lots of daily stretching of the neck muscles, on the tight side. This condition will take up to a year to resolve. If no therapy is done, surgery may be needed to release the pressure on the muscles.

Vera's thigh muscles are also very tight. We were given a set of stretching exercises for her.

She enjoyed the music therapy. It's funny how she looks like she's learning to play the piano!

The Way I See It

Never thought I'd say this, but yes. We're in a good place now with Vera. She's responding more to us than ever. Not anywhere near normal babies, but she's showing us new abilities, here and there, like sucking her hands, sucking on my finger, responding at times with big smiles.

Everything she does I see as a bonus. Because they really are. And it's a great feeling you know? Not expecting anything from your child. Other people stress over whether their kids do well in pre-school, college, university, in their career, in their love life...all through their lifetime. We're not on that yellow brick road.

For me, it's entirely different. It's 'Hey Vera. Let's see what you can do. What you can't is ok, it's already much more than we hope for.'

For others, if their child passes on prematurely, it is a life cut short. For Vera, she's already outlived her expectancy. When I realised this reality, it really put things into perspective. It gives me a great feeling of release, a freeing of the heart and mind from fear of the future.

What about Quality of Life? Some ask. She'll have so many medical problems. Well, don't we all come to that stage at some point in our lives? When we're old, tired, weary and unwell. It's the same life process isn't it? Delayed for us so we don't have to deal with it just yet; Accelerated for babies like Vera.

One mother once told me, 'This journey is an intense one'. It sure is. Because you can ever feel, joy, pain, peace, frustration...all come together in every moment.

I hope I survive the ride.

The Haze is Clearing

More about Vera's eyes. Over the last weekend, it seems that the hazy film over her left better eye has cleared much more than before. We'd stopped monitoring (and got lazy with putting the eye drops) because we don't really see any change day to day. Then suddenly one day, I noticed that her left eye looked darker. It also coincided with her starting to follow our faces. And strangely, over the last few days, she's been a lot calmer for longer. It's really a miracle.

For all those who are rooting for this little girl, thank you so much for your thoughts and prayers. One thing is clear: Vera wants to be here!

She Follows

A repeat of the photo of the month...because finally, Vera can follow our faces with her eyes!

This is a milestone for her. At last, we know she can at least focus. Although we don't yet know what is the quality of her vision. The little girl must be seeing better than before though, because she keeps awake a lot more now, as if there's more to see. She loves the 'light show' when we're out for a drive at night as well.

Look here Vera! It's Mama and Papa!

Walk in the Park II

Today we brought Vera to West Coast Park in the evening. It was a first for us as well. We spend too much time in the house, so it was nice to just get out in the open.

The little girl however doesn't seem to like being awake in the day. It's possible her hazy corneas scatter the light and therefore makes overly bright environments uncomfortable for her eyes. So might as well sleep. Next time, I'll post a pix of how big her eyes open at night!

High Brow

I don't know who Vera got them from - her flaming, pointy eyebrows. See the way they sharpen upwards? In Asia, this brow shape is commonly associated with fierce people. Let's just say they're her 'fighter brows'.

It Takes a Man

When you see someone every day, it's easy to take the person for granted. But at the end of the day, I always remind myself how lucky I am to have Ian caring for Vera in these early months.

You should see him...how he cajoles her no matter how exhausted he is; how he carries her, no matter how his back is aching; how he stays with her, no matter many hours she's been crying. How he handles the difficult feeds singlehandedly without letting frustration get to him. It's Patience with a capital P.

In contrast, I pass Vera on when my back is aching, when I get tired, when she's cried way too much. So much for the woman being the best for the job, right?

All I can say is that I'm really really fortunate. I've got the right man.

Hold Your Head Up

"They put me on my tummy again!"

Vera used to love laying in the prone position. Not anymore. This is how she protests: by doing the head raising thing. Up 1 second. Down to rest. Up again. Down to rest. It's tough for her, but this is how high she's been able to raise it to.

Mummy hopes that one day she'll be able to hold her head up.

Back with Tinny

After a long hiatus, I caught Vera smiling at Tinny in her sleep again! Must be on the rebound...

A Magic Moment

I’m sure every mom has one: A moment in which they feel truly connected to their baby.

For me, this is when Vera finally calms down after a bout of wailing. After I’ve bounced her enough on my pocket-spring bed (to the detriment of my spine). Her body becomes lax, her face presses against my chest and she’ll have this faraway look in her eyes. From my top-down view, I see her long eye-lashes and beautiful left eye. In the warm glow of the incandescent bedroom lamp, the view is almost mesmerizing.

“She feels me, and is content” I’d think to myself. Then, I consciously register the moment into my collection of Vera-memories. No diagnosis, prognosis, nor final analysis can take these away from me.

Kidneys & Hypertension

Vera went for a renal ultrasound yesterday. There's good and bad news. The good news is, her kidneys are normal! She had a duplex kidney and a cyst in one of them but somehow they seem undetectable at this 6th month scan. We don't really know what to make of it, but are happy there are no issues there.

However, this means that her high blood pressure is not brought about by renal issues. According to one Tri18 mom, there are two types of hypertension:

Essential Hypertension: brought on by issues with the kidney, can be treated with medication.

Pulmonary Hypertension: If Primary - there's no known cause, no treatment and eventually fatal. If secondary to respiratory or apnea issues, if these issues are treated it can be managed.

We'll have to find out what Vera has.

Happy 6th Month

It was a gathering of all the people who loved her. Great grandmother, grandparents, aunties, uncles, cousins, newphews...the people who've been coming quite regularly to see the little girl and to help Ian during the day. Vera cooperated for the photo op and was on her best behaviour. Too bad she couldn't taste the delicious Coffee Macademia Cheesecake made by my auntie!

The Half Year Mark

Here we are today, 6 months since Vera was born.

It's a milestone mark for her. From a frail, skinny newborn, she's now a chubby little infant with folds in her thighs and a double chin. She almost looks like a different baby.

Seeing her grow beyond our expectations has been a humbling experience. We do not expect anything anymore, because the word 'expectation' holds no water. Instead we take her as she is. And are thankful for each day she's with us. We know that it's these happy times that we'll remember at the end of the day.

It's a milestone mark for me as well. I never really bonded with Vera from birth as much as Ian did. Perhaps because I never saw her coming from me, perhaps because I didn't breastfeed her, perhaps because of my post natal blues. But over the past few months, I've been working on our bond, and it's much stronger now. I can tell she likes me to sing to her, bring her down for walks, and rock her to sleep at night.

It's been a roller coaster ride, with highs and lows, ups and downs. Times of pure joy, times of pure frustration and despair. But here we are today. And here she is today.

Nothing else really matters.

Heart Update

Vera saw the cardiologist yesterday. Her PDA has fully closed! It's a miracle, isn't it? It was a large one at birth, became a small one at 3 months and now fully closed at 6 months.

This little girl is a fighter with a heart that wants to beat on.

However, our joy was tempered by some not so good news. Vera's blood pressure is higher than normal for babies. They took it once when she was crying and it was close to the levels of an adult. I've read that hypertension is one of the issues for T18 children, and medication must be taken to control it. It can also be a sign of problems with the kidney (renal function).

We're going for ultrasound scans for her kidney next week, before the doctors decide on further course of action. Fingers crossed!

How Are Her Eyes?

Vera saw her Eye Doctor today. Her corneas have been cloudy since birth, but have been gradually clearing. The good news is, the clear portions are much clearer now. However, the thick, cloudy portions aren't really clearing, or very slowly.

That means she probably can see partially, but not with the clarity that we enjoy. I guess it's more of blurry shapes, outlines and movement for now.

Aside from her feeding issue, having her vision improve is the main thing for Vera. If only she can see! I believe she would be more easily entertained, and less easily insecure.

Having said that, it's a blessing that she can hear. With our voice and our touch, we still can cheer her up, calm her down and reach out to her. In my eyes, that's good enough for now.

Flowers for Vera

I've never received such a huge bouquet in my life. It was almost as heavy as Vera, close to 5kg I believe. But the flowers weren't just for me. They were for the little girl. All the way from friends in Japan. Looks like she's got some big fans!

Sucking Her Thumb

Most babies do this since birth, but for Vera, it's a milestone. Most T18 babies do not learn this skill.

She's been practicing for a while now, always in slow-mo fashion. Sometimes she gets the aiming right, sometimes it misses the target. But she's getting there.

Last night, she aimed perfectly and it was a home run! She then continued to suck her thumb happily.

Let's see what new stunts she'll surprise us with as she grows!

Finding My Voice

Another little miracle has happened since Vera came into my life: I've found my voice again.

No, not the one you hear, but the Inner Voice that runs through your head like a continuous stream of consciousness.

I used to have it with me. But with the pre-occupation of working life, it somehow disappeared. The irony was, I was a copywriter, a crafter of words, yet I had no words running through me. I tried to egg my thoughts onto paper, but failed always.

Now, the words flow like water. Almost as if the floodgates in my brain have been opened. Even my copywriting comes much more naturally and insightfully now. (Yes, Vera's helped me improve in my work!)

Perhaps this is the gift she's given me. The gift of finding my self.

She Can Wear Them

New clothes. They came in a flurry with Vera's arrival. Friends and well-wishers from far and wide gifted us with them. 0-3 months, 0-6 months...the labels said.

Back then, I felt nothing receiving them. In fact, each time I saw them, especially the bigger-sized ones, I'd think to myself, 'What's the use? Vera would probably not get to wear them," So I stashed them away in the storeroom.

As the weeks passed and we were into her 3rd month, we found that Vera was indeed outgrowing her 6 sets of Mothercare newborn vests. They had been the only thing small enough for her wear since birth.

Vera was actually outgrowing her clothes! The realisation filled me with such joy.

Now, I relish the very act of packing away clothing that no longer fits her. I'd find every excuse to relegate them to the "Outdated Pile". "This one's a little tight at the arms...that one's exposing her tummy..." Somehow, seeing the "Outdated Pile" grow fills me with an inexplicable feeling of pride.

I'm not the only one who's excited by Vera's outgrowth. The clothes lying dormant in the storeroom are probably stirring too. Especially the ones that once adorned another little baby girl named Jorryn. One by one, they're being hoisted out of darkness, and given new life again.

So keep growing alright little Vera? There are still so many clothes, waiting for you to wear them.

Ordinary Miracles

What a beautiful oxymoron!

And how true. That it's the most unspectacular, taken-for-granted things in life that are the ones that are the most awe-inspiring.

Like our eyes. They open for us every day, asking only for a blink now and then to keep going.

Like our heart. Pumping since the day we were born, never once stopping to rest or skip a beat.

Like our legs. Taking us wherever we wish to go. Scaling mountains, to the depths of the oceans, to explore faraways lands.

Like our fingers. Running tiring on a keyboard, churning out words to earn our keep, drumming on a piano to create sounds to soothe our souls.

There's so much more to cherish in the very ordinary. The things we look at but often do not see.

Do you see the "i" in "miracles"?

Divorce Rates

According to literature on the subject, the divorce rate among couples with a disabled child is an alarming 75%.

I can imagine why.

The stress of coping with the demise of a lifelong dream of having a normal baby; the struggles of dealing with everyday challenges that come with the special needs of such children; the complete end to any semblance of a previous carefree life...they can all collide and cause conflict.

What of the other 25%? Their marriages change too, I believe. Becoming stronger, deeper, welded together by a common cause.

Whichever way it is, keeping it together is hard work. Which is why these days, I try my best not to sweat the small stuff.

Months ago, I'd flip if let's say Ian doesn't change Vera's diapers and the sheets get wet.

Now, I just let it go. So one person oversleeps and misses her feed, another packs the wrong size of diapers, or spills the milk, or forgets this or that...it's really not such a big deal. What matters is that both parties are doing their very best already.

Will my marriage belong to the 75% or 25%?

Vera has shown us she's beaten the odds 90% to 10% to be here today. We ought to follow in her footsteps.

Inconsolable

My patience has been wearing thin recently. Vera seems to be getting more and more inconsolable. Last evening, she woke up from deep sleep howling, as if something had frightened her. She cried for the next 5 hours.

There was nothing we could do to pacify her. No amount of patting, carrying, cuddling or singing. And when we started to feed her, it just got progressively worse.

Of course, as with every crying feed, it takes FOREVER to go down the syringe, and after you’ve finally got the last ml done after 1 hour, vomiting is the end result. She swallows too much air and it just has to come out.

The persistent crying really gets to me. I experience it maybe once a day and already I’m on the end of my tether. Imagine Ian, handling such feeds 3 times on one day last week, (Disaster Day he calls it), all alone.

I’ve been asking myself, “How long more can I do this? This tube feeding thing? This tape replacement thing? This vomiting/cleaning/washing thing?”

Ian’s answer? “Just do it.”

Sorry, but I’m so far from attaining that mentality. I feel like giving up more often these days, feeling like just having a BREAK from this endless cycle. Yet I know I’m in no position to complain because Ian goes through it 24/7. And he’s not once lost his temper.

Sigh….this bringing-up-baby role. The toughest thing I’ve ever had to undertake in my life.

A Walk in the Park

Given Vera's adventure-spirited dad, it's no wonder Vera's getting her hiking training early.

Last weekend, we went to check out a section of the South Ridges Walk, a new trail through the foresty south-western part of Singapore.

Carrying all 5kg of her for nearly 2 hours, even with a sling, my back was aching and I had to see a chiropractor the next day. A walk in the park for her, but definitely not for me!

Cliffhanger II

Cliffhanger II : Escape from Cradle Island

Like all great movies, there's always a sequel.

Starring Vera, living dangerously once again.

S.O.F.T Conference

The S.O.F.T (Support Organisation for Trisomy 13 and 18) conference in Denver has just ended. Of course I had known about it a month or so before. But didn't know how important it would be for us to attend.

Now I wished we hadn't missed it. Basically, once every year, doctors, parents and children with Trisomy come together to share new information, support, care and treatment issues. According to one mom, the doctors who take part voluntarily to help the kids. Also we could have met other parents and learnt a lot from them. Of course, also to see how other kids like Vera.

Most importantly, we'd be among people who know exactly what we're going through. And we'd feel like we're not alone at all.

Well, next year ok, Vera? You can go on your first plane ride.

Vera's Playmates

For a person who's just a few months old, Vera's has got quite a following of friends.

There's the great grandmother who, at 88 years of age, comes to sing Teochew songs to her.

The grandaunt who comes and takes her down for walks in the park.

The granduncle and aunt who come and keep her entertained.

The auntie who comes weeknights to calm her during her most colicky time of the day.

The auntie who rushes by for a quick visit during her lunchtime.

And of course, her regular, biggest fan, Papa Penguin, whom she can always count on for some entertainment.

Lucky girl.