Happy Lunar New Year 2014

Double Happiness - Leona and Vera, our Trisomy 18 miracles.

We visited Baby Leona during the Lunar New Year. She is growing well, has great eye tracking, and has passed her hearing test. What joy it was to be able to carry her for the first time. We know how precious the moment is because of how few of us there are. While others wish to "huat ah!" (make money) during this season, all we hope for is health for our babies.

She Prefers Mummy

Can this T18 girl recognise her loved ones? More than that. She shows her preference clearly.

When Mummy appears on her radar, Daddy is immediately forgotten.

She can't speak, but she expresses through her vocalisations. I can now differentiate the sounds for "Come to me" and "Finally, you're here". Her beckoning, her joy, her fierce hugs, are priceless.

Kick & Clap

This is how she shows you she's super happy to see you and have you carry her.

Green Getaway

Ian and I took a one-day kid break. I wanted to check out Singapore's green belt, the Southern Ridges. In this built-up city of ours, green is hard to come by. We were lucky to get a room with a view of Mount Faber, with Orioles flitting past our window in the morning. It's nice to get away once in a while.

She Watches Him

Vera is keenly aware of her brother now. He's grown in size for one, and it's hard to ignore the chatterbox.

He's grown quite fond of her as well. He'll sing her her favourite songs when she fusses. And can push her in the pram quite well now.

I ask him to hug Vera, and he does so with his 'dinosaur claws'.

Me and My Daddy

Ian is a family man. He rushes home after work to the kids. He doesn't smoke, doesn't drink, doesn't shop, and has no need like me to "have a holiday". Being with the kids is enough for him.

Christmas Fun

Musical toys always work for Vera - mummy buys her something to train her finger holding.

We bring my Grandma over to enjoy time with Vera.

December School Holidays 2013

The school holidays started in mid-November for Vera and Daen. 

We put her in the stander for the first two weeks of the holidays. 

Daen thinks this is a train.

Then she fell sick and the whole month of December she was unwell. 

First came a week of stomach flu with Diarrhea, followed by a viral infection for two weeks, triggered by her 2nd dental checkup. The dentist brushed her teeth, while she was lying face up. She possibly swallowed some dislodged plaque. This is not new to us. The same thing happened after her first dental visit 3 years ago.

Then a strange tummy crunching, arching and pain started that has lasted till now. 

We hope to see the doctor in 2 days' time for some answers. It could likely be that her reflux is back - we had stopped medication in March 2013. 

Vera's Room

She's coming to 6, and will soon need a longer bed,
perhaps one with remote adjustable heights and angles like in the hospital. 

Daen climbs into his Sister's bed for fun.

Her BiPAP stuff are in a trolley tied to the bed, so it will never topple.
Daen calls it "chea chea's vacuum cleaner". 

There's lots of stuff to keep organised.

Top shelf: Suction machine, music player for Vera
Table top: Hair dryer for drying her mask, diapers, clothes, medical supplies, and washing up basin.

Prone Princess

Stretchable cotton tube to cover Button from rubbing when prone 

Tube makes her look slimmer too!

Ever since Chubby got into kicking while prone, she's slimmed down a little. All that movement is so good for her. She can kick quite vigorously, so we put a tube over the button to reduce rubbing.

Prone time has increased too. She can stay like this for about 10 minutes. How far we have come.  
       

Her Ballet Flats

Feet Support for standing

 It's been almost a year since Vera's last Orthotic appointment. The pediatric orthotist was happy that the straps were well-worn and fraying, suggesting frequent use. She fixed new straps and also some toe wedges which prevent crimping.

The school holidays are when I sort out all of Vera's medical issues - free from the hectic schedule of bringing her to school.

End of November, she'll soon have her 3rd sleep study. Kids normally do one once a year, for Vera, it's been a year and a half already.

Start of December, she'll also go for her second dental check up ever. Yup, she's turning 6 and has only been to the dentist once. Teeth are terribly plagued with plaque.

Fingers crossed she stays well for all the procedures.

Same Size

Vera is coming to 6, Daen is coming to 4. Two years apart, but they are the same length.

After this point, Daen will surpass his sister and physically become "bigger" brother.

I hope one day he will treasure this picture of how they were like twins once.

D-I-Y Button Change

I finally get down to changing Vera's leaky Mickey button. It is a simple exercise, and I attempted to do it and take pictures at the same time. 

Step 1: Draw out the water from the balloon to deflate it.

Step 2: Gently ease old button out of tummy hole.

Step 3: Insert new button and pump up balloon with new water.

What a cool invention.

Flat Out For 2 Weeks

Our caregiver leaves a note for Vera.

Every 2 years, caregivers get home leave of 15 days.

Each time it comes around, I brace myself for two weeks of sleeplessness.

Because I would have to sleep with Vera, and her Bi-pap machine.

I would stay up for as long as I can hear it heaving in and out with her every breath, until the rhythmic muffled whistling lulls me finally to sleep for a few short hours. Each time she stirs, the rhythm is disrupted and I awaken. If she shifts and her masks leaks, the hissing sound of escaping air makes me jump out of bed. Yes. I am that light a sleeper.

So when our caregiver left for her well-deserved break, I asked Ian to sleep with Vera instead. Problem is, Ian is a sound sleeper - so if her mask had a leak and the alarm sounds, it is likely he won't hear it. But I took the risk. I needed to sleep well to look after Vera and Daen in the day.

On Day Two, Ian catches a cold from sleeping in the air con room with Vera. (We've tried, but the girl just won't sleep well without the cool comfort.) Usually, he's well in a couple of days. This time, he takes a week to feel a little better.

That one week, I slept (I mean, didn't) with Vera, and in the day felt the weight of her 14kg frame on my not-quite-so-youthful body. At one point, I was on the brink of falling sick myself. My all-time fear, is that if I had to care for Vera, she'd catch the bug and then, we'd seriously not be able to manage on our own.

We scraped by, grateful for the help from my mum, who came daily with lunch and cook our dinner.

In a family with a high-need special child requiring machine aids, an adult/kid ratio of 2:2 leaves no room for sickness. 3:2 is almost a necessity for sanity.

16 days later, Beth returns as her note promised. My body gave out and I fell sick the very next day.

While I'd like to think that I am still young, my stamina and energy has clearly drop over the years. The next time round, I am definitely getting a home nurse to tide us over.

Big Boy, Big Girl

Asking Daen how he protects Vera

All too soon, the kids have grown up. Though skinnier than his sister, Daen at 3+ has surpassed Vera in height. Vera remains the heavyweight, and has steadily put on the pounds.

Daen the teddy and Vera the piggy are in a "cave" together
 - we constantly instill in him the need to protect his sister. 

Taking his first strides on a pedal-less bike.

 While Daen finds his feet on a bicycle, Vera is making great progress in the pool. When we first started her in the pool at a year old, she lasted barely 15 minutes. Today, she can stay almost an hour and is still kicking after we've taken her out of the pool. Teacher JJ has been so great with her this year, and with Vera being much more engaged now, we are all enjoying school sessions, particularly hydrotherapy. Here's to more good times ahead!

"I'm lovin' it!"

Leona is ONE

Today we share the joy of another Trisomy 18 family reaching the Big One with their daughter Leona.

For Trisomy 18 parents, this milestone is extra meaningful simply because the medical literature tells us that 90% do not make it to their first birthday. So in our hearts, it is as if our T18 kids who do, have just graduated in the top 10 percentile.

The little lioness Leona is ONE!!!

Living a miracle these two!

A wonderful surprise, Leona's paed who is also Vera's ex-paed
drops by to share the joy. We love doctors who love our children!

School Workout

More standing time, to get Vera used to bearing weight on her feet.

It's the second half of 2013 already and Vera is back into the swing of things at school.

PT prescribes more weight bearing on her feet and hands.

Supporting her from behind and shift weight from one foot to the other.

Lots of resistance from the girl on this one!

Also curling her inwards to stretch out her spine, as she is always arching backwards.

Getting her to kick one foot at a time.

Unlike in 2012, where she frequently complained during PT sessions, she's been pliant and cooperative this year. She seems to try hard to do what's required. I think her core strength has helped in this respect. We are all very happy and proud of the progress she is making.

Making a Smile



Caught her pulling back her mouth to make a smile : )


Vera can smile spontaneously, but a few days ago, we actually caught her practising how to 'make' a smile.

Every time she shows up some new trick or 'in thing', we are filled with a mixture of surprise, amusement, pride and pure joy.

It is clear to us, that she wants to learn, and could probably be trying to imitate our mouth movements, since she enjoys staring and tracking our faces all the time.

It is also clear that she is responding more and more to different sounds we make - animal sounds, sirens, - her face lights up.

This a girl with moderate hearing in only one ear, and moderate vision in only one eye. Her good ear and good eye must be working doubly hard!

She continues to amaze us.

P.S. The haze has abated, thankfully! We are keeping our fingers crossed it stays away over the next few months.

Also thanks Cathy and Susan for checking in ever so faithfully on Vera, it means a lot to us!

Hazardous Haze 2013

Indiscriminate burning in Indonesia threatens our health, our economy and our right to fresh air.

I've still not fully recovered, and the annual haze is upon us. You may remember previous posts about this and how it does no favours for kids with respiratory issues like Vera.

Bacterial filters turn black much faster.
Aircon filters are soot black.
I wonder what it looks like in our nostrils.

The PSI which for years has hovered around the 150 mark, has shot up to an unprecedented 321. In the 'hazardous' range. My eyes smart. My nose is blocked. The forest fires may be miles away, but it looks and smells like we're in the thick of one.

We are taking no chances with Vera. She is staying strictly at home, 24/7.

Meanwhile, a few changes take place.

Our power bill sky-rockets. Fans are on full-blast all day as we shut all our doors and windows. Aircon usage is extended. We bulk buy groceries to avoid multiple trips. We stop visiting parks, beaches, one another. We borrow tons of books from the library in a bid to entertain a fidgety home-bound three-year-old. Most importantly, we don our masks.

I pre-empted the worsening of the haze and got a box of them for $24. Overnight, it became $50. It is sold out at all pharmacies.

This isn't a war, but it feels quite like we are under seige.

My Lowest Point

The day Vera came home from the hospital, I fell sick with a bad bout of the flu.

Three days of high fever, which is rare for me, and a hacking cough that makes my diaphragm hurt. I perspire buckets non-stop. My nose cannot stop flowing.

When kids fall sick, the strain on caregivers increases. I think my body held out till they got better and then my system crashed.

I feel so weak and worn down. After one month of battling their illnesses, I end up having to fight my own.

It is too much to bear.

And what if they catch my lethal bug? What if VERA catches it? I am paranoid now, so paranoid. One month is all my body can handle. Please stop at me, please. Spare us. 

Resting Her Gut

Thanks for giving my bum a rest!

24-05-13 IV plug on Right Leg after 3 attempts

Twelve days after the diarrhoea didn't show signs of improving (in fact, it actually got worse with bad distension), we warded Vera. We knew that the only way to break the cycle was to rest her tummy, which requires putting her on an IV drip. What a relief for her and for us. Finally a reprieve from the pressure to keep her hydrated and the non-stop diaper-changing.

One-on-one time with Vera as Mummy does
the day shift and Daddy the night shift

Caregiver Beth caught the tummy flu (possibly from clearing so many days of infected poop) and had to rest. So Mummy and Daddy took turns at the hospital. It was a good change of scene, to be able to spend the day in bed with Vera, doing nothing but hug her. (Thank you IV drip!)