28 October 2011

Back To Work

Just as quickly as I had left adland (to care for Vera), I'm back into it again.

The difference in routine is marked.

And I would say, working is less tiring than staying home.

I sit in air-con comfort, have free-flow of cappucinos, chat and think of ideas, have yummy fare for lunch.

Compared to:

Push Daen out to buy groceries. Feed breakfast. Watch him at playground.
Bring him back for lunch.
Take Vera out for sun, standing therapy.
Bring her back for bath.
Put Daen to sleep.
More therapy with Vera.
Daen wakes push Daen out to play.
Bring him back for dinner.
Push Vera out for evening stroll and more standing.
Come back put Daen to sleep.

I miss all of it. But I'm glad I got the chance to do it all.

I hope Daen has grown enough to find his own feet, and will get used to not having me on demand. Not that he's ever been clingy that sweet boy.

Vera? I now see her for less than 3 hours a day.

I'm trying hard to convince myself that this is normal, many parents are in these shoes, and I'm not neglecting my kids.


23 October 2011

The Myth of Getting Over It


Though Vera is doing well, the topic of grief is something which brews on my mind's backburner. It is inevitable I think, when your child lives with a diagnosis like Trisomy 18.

Trisomy 18 Foundation shared this link on Facebook.


http://andysarmy.com/the-myth-of-getting-over-it

It is the most honest and simple sharing on grief I've read.

19 October 2011

Surgeons


I don't envy surgeons.

When parents of a Trisomy 18 kiddo come to you and say, 'Please help my baby', what do you do?

Tell them 'erm...the risks are very high, you may lose her on the table, even if we operate and she survives, she won't last very long so what's the point. Plus she will continue to be high-need and low functioning.'

Or do you say 'ok, if this is the problem, this is what has to be done. The risks are very high, and you must be prepared to lose her, but we'll do whatever we can. I can't tell you if she will make it, that's up to her. If she does, potentially it could give her a few more months or years.'

I guess the difference lies in where the surgeon stands on the concept of Futility and Hope.

Both lie on opposite ends of the spectrum.

Where does one end and the other begin?

Are surgeons in a position to decide?

If the risks are too high are they still worth taking, to buy time for love?

How do they reconcile with failed attempts? Do they 'just move on' or break down and cry too?

Such a heavy responsibility - holding the fate of someone's child in your hands.

16 October 2011

Special Child


Inspired by Vera.
Dedicated to the special children of the world.

How I Struggled

This post is about Language. Chinese in particular.

Since Daen was born, we have been speaking to him in English. But now, I've been increasingly using Mandarin. He's mildly bemused and replies in English.

My Mandarin is not good. My parents are English-speaking, so I never spoke any Mandarin till I started school at seven.

Until today, I remember my first Chinese lesson vividly.

I was practically stunned. I could not understand what the teacher was saying.

It did not help that she was really fierce, pronounced my Chinese name with the wrong 'ying' (intonation) - which made me feel lousy, and would throw my jotter book on the floor in front of the class.

The trauma did not end in Primary school. 

Because I did well in the PSLE, I had the 'privilege' of going to a 'SAP Secondary School' - short for 'Special Assistance Plan'. They told me that I belonged to the top 10% of students nationwide, and would be learning Chinese as a First Language. For four years. 

While others take Chinese as a second language - learning a less difficult level of it - I was thrown into the deep end, and 'forced' to learn a higher level of Chinese.

First Language? Chinese was not even a language I spoke.

Every day, for 4 years I struggled to find friends, to fit in, to find my place. Chinese lessons were 30 minutes of treading water, trying desperately to stay afloat.

My classmates spoke Mandarin effortlessly. Sometimes, I didn't understand what they were saying but pretended I did, just so I would fit in. I learnt what the hottest Chinese pop songs and stars of the day were. I memorised them via 'han yu pin yin'.

After four years, I did learn to speak Mandarin with the correct intonation. And I got a B grade for it. (The school had excellent Chinese teachers.)  

Did I learn to love the language? No. 

Did I want to speak in Mandarin? Most definitely not.

The only consolation was that because I had learnt it as a First Language for four years, I wouldn't have to take it as a subject in Junior College. I rejoiced that I would be spared another two years of the dreaded language. I could banish Chinese from my world once and for all, and never touch it again. 

Until now. 

When you have children, it seem like you live life all over again. 

And I am determined to do everything possible, to ensure Daen doesn't have the same experience as I did. 

It's just way too painful.

The time to turn the tide is now. When he is still open to learning anything. 

Already he is showing a preference for English, since mummy loves English too. He says a few Chinese words with an English slang.

Research shows that a child has to be exposed to a language 40% each day to pick it up.

Which is why I've had to take my Mandarin out of the closet and start wearing it again. Daily. 

I have had to convince my highly-resistive brain that the days of luxuriating solely in the English language are over. 

It is not that I dislike the language. I just had a bad time with its introduction and induction. 

But as we all know, practice makes perfect. The more I use it, the more effortless it is becoming. I can at least carry on a conversation with people in the park.

Perhaps the real reason is not that I don't want Daen to suffer like I did. 

Rather, it is me not wanting to relive that unhappy period of my life, when the time comes to coach Daen in his studies.

That, is enough to drive me to do whatever I can to prevent it from happening. 

It's time to dig that English-Chinese dictionary out of the drawer.


15 October 2011

Toddler Time



Daen's officially a toddler.

We take him out whenever Vera is sleeping, so he can expend his energy.


Here he spends some quality time with daddy. It is going to get lesser now, as daddy has been working late almost every day recently.

Spending the last 18 months with Daen has been a real privilege. He is active, sociable, observant and loves nature. He greets anyone and everyone. He loves sticks and snails. He dutifully picks litter and disposes it in bins.

I couldn't have asked for a better little boy.

Sengkang Wetland Park - Tranquillity a 5-minute drive away

Silent Reflux Confirmed

Results from the PH Impedance study are in.

Vera definitely has Silent Reflux. That means although she doesn't vomit, fluids are going up and down her oesophagus all day. 147 times/day to be exact.

About 50 times, it goes up as high as 9cm about the stomach. Which is quite near the lungs. Not good.

Solution?

Well, there is no long-term solution. Reflux is something that cannot be cured once and for all.

We could put Vera through surgery for a re-fundoplication - tightening the band leading out of the stomach - preventing fluids from going back up, but that commonly lasts for 5 years. In Vera's case, the first fundoplication when she was 1 year old lasted only a year. So we're not too convinced of its durability in her case.

Plus, we're told by the surgeon that the re-fundo needs to be done via a cut on the stomach, which sound a little drastic. The first time round was using keyhole surgery. If anyone has had a re-fundo via keyhole, do let me know!

My other greater worry is intubation. Vera has had surgery twice, and both times, intubation was difficult and quite a challenge for the team. Basically that means lots of trial and error, in and out, and scarring and swelling of her oesophagus.

The plan now is to wait until something happens. Meaning, if some fluids go into her lungs and causes Aspiration Pneumonia, that will be the time we seriously consider the surgery.

Meanwhile, we continue the costly medicine Omeprazole, which makes the hyperactive fluids un-acidic. Liquid going into the lungs is bad, but acidic liquid is worse.

Let's hope the fluids behave themselves and don't stray too much.

Soap Play


Sensory time continues at home. School offers lots of ideas, so I copy and do it at home. Vera's very responsive now as you can see. It's been a great year of improvement for her, in terms of her sense of balance, sense of awareness, and interaction with toys and other textures.

07 October 2011

Stackable Stools


Face rash has cleared. Mucus is almost gone. Vera's getting back to her sit-stand routine.

These stools from IKEA are just great. Its stackability allows for height change as Vera grows. I tried two, and she wasn't too happy. Three and she's sitting relaxed and happy to pull up to standing.

This is what they use for the kids in class too. So we practice every day at home. Getting her used to having no arm rests.

It would be a milestone to have her sit and balance on a stool without any backing for the length of Circle Time. I know she can do it.

06 October 2011

Every Day


Oh how ordinary it may seem
that we're living a miracle every day.

3 years 7 months 2 weeks with our noisy girl.

02 October 2011

Tegaderm Rash


The Tegaderm (transparent tape) used to fix the ph probe has left a rash on Vera's cheek. Although thin, it is not as soft as an ng tube, leaving a reddish pressure point at the corner of her nostril as well.

She's developed a low grade fever as well, but for now, we're still managing at home.