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.

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.

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.

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.

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.

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.