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!)

Road to Recovery

Both Daen and Vera are on the road to recovery.

It's always a relief to know they've turned the corner. That means days of normalcy are up ahead. (And I can get some life back - meaning kids go to school, I go to work or get some me-time at Starbucks)

We've put Vera on Chinese medication for her phlegm. For many of us, when Western meds fail, in this case to get rid of the phlegm, we turn to TCM for help. It's Vera's first time taking Chinese meds, so we'll see how she responds.

Meanwhile, the porky has resumed her favourite pasttime - sliding backwards on her tummy to feel the cool floor.

Double Whammy May

I spoke too soon (again) about Daen and Vera getting well.

The next moment everything changed.

Weak and pale from the vomiting

Daen -
First 2 weeks of May: Viral Flu, runny nose and cough for 3 weeks
Now: Stomach Flu, vomiting 8 times on Day 2, now can only take liquid. Six months ago when he had his first bout of Gastroenteritis, he had to be warded on a drip. Luckily, this time he seems to be able to ride it through at home.

Eyebag beauty...from multiple nights of choking during sleep

Vera -
First 2 weeks of May: Viral Flu (likely caught from Daen)
Now: Viral Flu 2nd round, plus likely Gastroenteritis (likely caught from Daen as well) with severe, unstoppable diarrhea. Her bum is red and raw.

Two kids. Double the joy, double the work, double the pain as well.

Ian is sick already. I am burning out. Last (wo)man standing is our caregiver.

Please let the air clear in April.

Pulau Ubin

We brought Daen on a boat to Pulau Ubin. It was his first time on a boat. Hopefully he inherits our love for the sea.

After months of talking about the ride, he finally got to.....

His first taste of the coconut juice too!

Together Again

Everyone's better and quarantine is over. Hurray!

Getting Better

Eye bags on Vera (and caregiver Beth) from two sleepless nights

Day 3 and Vera is better. From experience, if fever reaches over 39 deg C in the first few days, we start her on antibiotics straightaway. It can prevent it from developing into something bigger. If fever is low grade throughout, we do without antibiotics. 

Daen's cough is getting worse though. 

Thank you for the good thoughts, we hope the nasty bugs stay away for everyone!

Labour Day, Literally

Labour Day...and we've got our work cut out for us.

Vera is sick. Fever last at 40 degrees C. She's having the chills. The greenish goo is unstoppable.

Daen had been sickish for the last two weeks with a persistent runny nose. I thought it was Allergic Rhinitis because he wasn't exactly sick. I let my guard down, thinking Vera was stronger now, and wouldn't catch it.

Anyway, it is inevitable. Kid A gets a bug from school, comes home and passes it to Kid B.

In the wee hours of the morning, I fumble to set up the works: Oxygen machine, Nebuliser, suction machine. The suction cycle begins again, every 3-4 hourly in the first few days. Beth and I know the drill - our well-worn hands have memorised it. Except that now, Vera has grown stronger and holding her down is increasingly difficult.

Let's hope she takes a turn for the better tomorrow, else it's to the hospital we go.

March 2013 in Pictures

Coming out of February with Vera's birthday, we go into March with Ian's and Daen's birthdays.

It is a happy, busy time. 

March was dedicated to making Daen feel extra special. 

We brought him to Underwater World at Sentosa for the first time.

"Can I touch it?" 

"Mummy, stand on the travellator!"

We also celebrated his birthday in school. Turning three, he is able to actively participate in the whole cake cutting routine for the first time.

After Vera's birthday bash, he said he wanted a similar party for his birthday, with "lots of people". Hmmm...maybe next year.

Iron Hug

Since Vera turned 5 last month, she has been into hugging with a vengeance.

Her grip is tenacious. It's almost a strangle, and we have to pry her hands apart with some force.

To think Vera has lived to this day to give me the longest, tightest hugs I've ever gotten in my life. She won't ever learn to speak, but she sure has learnt to love.

And it is pure and simple every time.

Vera is 5 Birthday Photos

Here are some photos of Vera's birthday party. They were taken by Norman Ng, a professional photographer - www.normanng.com

Mai Mai lends her party hands to bring the garden theme to life.

Vera starts hugging everyone who comes near.

Yummy Strawberry Mille Feuille cake from Glace
and melt-in-the-mouth cupcakes by Auntie Jackie.

"Can I eat this?"