29 October 2009

VivoCity Outing

My dear friend Bridgette suggested a visit to Vivocity last weekend with little Val.

Singapore is filled with shopping malls and that's inevitably where families end up - for the cool air-con comfort in a desperate bid to escape the tropical heat. But Vivocity is different. Its rooftop is a vast expanse of wading water, overlooking the sea. Children get a place to frolic, while parents get a breather from the deafening drone of the shopping crowd.

It was Vera's first time there. We make it a point to bring her out, even though she doesn't quite enjoy the hot, bright outdoors. But in the glow of the setting sun, I caught this shot of daddy and Vera. It says so much without words.

24 October 2009

Stand Tall

Our little friend loves to stand. And now standing up is the in thing for her. She is able to do it without me raising her, just lightly supporting her at the shoulders. When she rises, there's a sense of accomplishment on her face. And also on mine.

21 October 2009

The Towkay

Vera's learnt to 'keow kah' like a 'towkay' (big boss).

It's always the same right leg onto left knee.

She does it everywhere. Lying down, sitting up.

Her hands are now firm friends with her feet.

16 October 2009

Night No.3

I could stare at it all night.

The oximeter is so hypnotic - the invisible sweeping bar moves left to right, left to right, and you can't help but be transfixed by it.

Watching the numbers change is like watching a 'live' telecast. Vera struggles: the numbers run amok. Vera settles into deep sleep: the number stays pretty constant.

An alarm is supposed to sound off at preset levels. I'm thinking, if I had an oximeter at home, I probably wouldn't get much sleep, given the light sleeper that I am. Or I guess I'll just learn to manage.

Night No.3 and boy am I glad it's only 3 nights. But we have the machine till next Monday so we might just keep it on to monitor for a bit more.

In 3 weeks' time, we'll know if Vera needs to be on oxygen or not.

15 October 2009

Night No.2

Thanks to the heads up from Cathy, I now know that the O2 levels have to be not just in the 90s, but the high 90s, like 97-100.

It's night No. 2 and Vera seems to be hovering around 95. She's never hit 100 as far as I've seen. When she tosses and turns, it's in the lower 90s.

She's been asleep since 7pm so I'm keeping my fingers doubly crossed she will sleep till 6am. Meanwhile, I'm gonna get some shut-eye.

14 October 2009

Night Mission

Just to recap, here we are, 6 months since Vera's sleep study with no CPAP and a severe Obstructive sleep apnea diagnosis. We paid a visit to her respiratory doctor yesterday and she didn't push on the CPAP either, hearing how difficult it was to get Vera on it.

Instead she sent us home with an oximeter. Over the next 3 nights, we are supposed to monitor Vera's oxygen saturation and heart rate. If levels are found to be in an acceptable range, we'll leave things be, if not, we may have to give Vera oxygen at night.

During the sleep study, I remember seeing O2 levels in the 60s. Her lowest was found to be 52. It's 4am on this first night and we're seeing levels in their 90s! I can't believe my eyes. Is the monitor faulty? Is she just having a good night? How is it possible? I'm waiting expectantly for it to fall.

Good old Ian has done his shift from 11pm - 3am and gone to bed. Mummy's turn to stay up...

13 October 2009

Chewing Gums

As part of the long journey towards getting Vera to eat orally, we have to improve her jaw movement by getting her to bite and chew on oral therapy tools.

She'd never been introduced to a pacifier since birth, since there was always a feeding tube in her mouth. But I bought this GumdropTM pacifier from the States (recommended by a Tri18 mom thank you!) and it's turned out to be great for therapy. It is translucent and is the only pacifier I know with a hole that allows you to view tongue and jaw movement.

At first, Vera refused it and kept gagging. Then, I thought, 'Hmmm...since she likes to chew on her finger, maybe if I put her finger in it, I could trick her into thinking it's her finger she's chewing!'

It worked. Hehehe.

09 October 2009

Getting A Grip

We've always been delighted that Vera loves to tap her hands. She'll tap her toys, her knees, your face, but she doesn't quite know how to grip things and hold onto them yet.

So the goal now is to stimulate her hand muscles and help her learn to grasp things and subsequently learn to reach out for them.

Textured toys and materials are best for this. But surprisingly, it is an oral swab called the Toothette, that elicits the most active response from her fingers. She stares at it, grips it, tugs at it, loves being stroked by it - what a great little 45 cent tool.

05 October 2009

You & Me

Vera has been ensuring that I have a happy pregnancy.

She makes me sing, laugh and smile. She entertains me with her several antics - like scrutinizing her hands, smiling to herself, trying to turn over (unsuccessfully) superman-style.

With help at home, I am really enjoying Vera. Now, my main job is to carry out her therapy daily, bring her to school and for hospital visits. And of course to feed myself into a chubby mummy!

03 October 2009

Blood Pressure Normalised

Vera had a renal (kidney) ultrasound done today and everything looks okay. It is recommended that she gets one done every 6 months to look for Wilm's Tumor, something that commonly affects the kidneys of Trisomy 18 kids.

The first signs of something amiss in the kidneys is a higher than normal blood pressure. I'm happy to say that Vera's blood pressure seems to have come down to normal levels. They were on the high side in her first year, so we were on the lookout for hypertension. But the numbers are looking good now.

So it looks like the main issue left is her Sleep Apnea. We will be consulting with her respiratory doctor next week on the consequences of not using CPAP. Fingers crossed her breathing will get better as she grows and this issue will resolve itself.

01 October 2009

Bad Eye Getting Better

All this while, we were content with Vera having vision in her good left eye. Her right had practically no response since birth as the haze covering it is thicker.

Today, at her routine 3 monthly Eye Doc appointment, they found that her right eye is now responding. The haze has cleared visibly, without medication.

Cards like these were flashed in front of each of Vera's eyes to test their movement. It's called a Grating Acuity Test. The better the eye, the narrower the lines it can detect. Her reading was L: 20/470, R: 20/960. I guess that means the right is probably half as good as the left.

Numbers aside...whoopie! Sight improvement is big for us and Vera. There's still a long way from good vision but at least it's a start.

In the past, when people asked, "Can she see?" I'd say "Only with her left eye".

Now, I can happily say: "Yes she can!"