Chicken Pox

The pus-filled blister on her face appeared overnight. We thought it was caused by her mask. But the next day, more rash spots appeared on her back.


We happened to have a planned visit to the pediatrician, and she felt it may be early chicken pox. In normal kids, she would have let them fight the virus without medication. But as Vera's immune system is weak, she gave her anti-viral medication to limit the severity of the outbreak.

We should have given Vera the vaccination at 15months, but again, we dropped the ball and now she's caught it.

As pox is contagious, she may have spread it to Daen, as the incubation period is 3 weeks' prior to the appearance of spots. And yes, they have been playing together and he's been touching her mouth and face.

Vera's now quarantined in her room. Daen will not see his sister in the next 2 weeks. Separating them is the only thing we can do at this point.

Another setback, just when we were planning to get her back to school.

Daen Is One

Vera's still dealing with a runny nose, but we decided she couldn't miss her brother's first birthday. So she made a quick special appearance. Daen was dressed in the tiger suit bought by his Godma.

Grandma shows him the jungle animals.

He got a safari-themed cake, and a jungle-themed party courtesy of his Mai Mai, our very own David Tutera.

Daen is born in the year of the Tiger.

In keeping with Chinese tradition, he was asked to crawl towards and pick one of four items. The one he chooses will reveal what he is likely to be in the future (supposedly)

1) Ruler - Engineer
2) Book - Academic
3) Abacus - Accountant
4) Chicken wing - Chef
He chose the abacus. (A-hah, a future CFO!)

We had a special pre-birthday visit from his Godma and kids as well, and he thoroughly enjoyed his new airplane car.

It's been a blast staying home with Daen - he's been such a good, easy baby that it's so much fun looking after him. Hopefully that continues!

Feet Reinforcements

Foot Braces - To support her inward-bending feet so they can
develop more normally. The orthotist says the shoes are less important now
as the AFOs are providing the all-round support for the feet.

Standing Time - I left her for a split second to take this shot.

She still needs to be held at the pelvis.

Taking a break - "I'm tired! Mommy is working me so hard..."
Her head control has improved and she can sit in her armchair by herself!

Better or not?

 

I'm better, but Vera is not.

Two weeks after coming home from hospital and we're still suctioning 3 hourly. We should be back to no suctioning days by now. We might have to get back to hospital and Xray to check if the infection is still in her lungs.

The strange thing is, Vera seems to have become more active after the pneumonia bout.

I thought she'd be weak and mostly stationary, but the girl is back to doing her turns as if she never had the episode.

We got her some AFOs (foot braces) and she's been happily working out in them as well.

This is the Vera I like. Not the one who has started to scream in anger during suctioning.

Mummy is Down

Vera came home 4 days ago, and I fell sick right after.

High fever and a throat that's so inflamed it's bleeding.

This is the second time I've fallen sick after a Vera-in-hospital episode. I guess being exposed to the germy environment plus a lowered immunity from lack of rest makes it inevitable.

There's a flu epidemic in Singapore now, and it shows no signs of abating. Once everyone is well, we're gonna get vaccinated. We just can't afford the strain on so many caregivers with another pneumonia bout like this.

ResMed Mask

This is the mask we eventually got for Vera - the ResMed Mirage Micro adult nasal mask.

The hospital one was just too large for her face, and I didn't like the heaviness of the gel.

There are so many factors to consider when choosing a mask.

a) It must be lightweight.
b) It must not block her line of vision.
c) It must have low leakage.
d) It must have just the right coverage over nose and mouth.
e) It must be easy to fasten and unfasten.
f) It must be easy to wash.
g) It must give us a good view of her nostrils and mouth.

The Mirage Micro has all the above. Best of all, it has the same thin, soft silicone lining as her old mask, which made it a clear choice. Vera took to the mask so well.

I feel so relieved to have found it. So many nights I've been worrying over what could possibly be as good as the Maskmedic but bigger.

Once again, answers reveal themselves, just when we need them.

The Home Stretch

We're on the home stretch. And it's been a stretch alright.

Two weeks of mind-numbing diaper-changing and we're still at it.

Two weeks of suctioning and we're still at it.

Two weeks of fighting us and she's still at it.

We're spent and so is she. But I see some smiles today, and it looks like the worst is over. We're likely to discharge tomorrow and continue managing the tail end of the infection at home. (No point staying longer than necessary and risk picking up new bugs.)

I'm grateful for all the help from our loved ones to care for Daen in my absence. Without which we would not have been able to give Vera round-the-clock attention.

With a young child on a biPAP who can't speak for herself, it is just impossible to leave her alone in hospital. Unless she has one-to-one nursing care (as in PICU), not in an 8-bedder.

It may be tiring but it's still manageable compared to the same episode last year when I was 7 months pregnant. So, I'm not complaining.

I feel like I've been waiting to exhale for the last two weeks. Now that Vera is breathing better, I breathe a lot easier as well.

Full Face Mask

This gigantic mask is going to be Vera's lifesaver.

It's a full face one, meaning it covers both her mouth and nose. It looks similar to the first one she tried 2 years ago.

Her current mask only covers her nose. For the air pressure to enter her lungs, Vera's mouth has to be closed.

The problem is, Vera sleeps with her mouth open. So whatever air pressure the BiPAP is giving is escaping through her mouth. And because she breathe mostly through her mouth instead of her nose, the machine is not detecting those 'mouth breaths' and mistakenly thinks that she only take very few 'nose breaths'. It therefore does not 'kick in' as much as required, and is under-supporting her.

To illustrate more clearly, previously Vera was taking 30 breaths/min. But the machine was only supporting 10 of those breaths. Now she's taking 34 breaths/min and the machine is supporting 30 of those breaths. It's a closer match.

Finally, ANSWERS to her sleep perspiration and fitful sleep.

It's not the machine, it's the mask!

With the full face mask, her sats improve. It's clear that this is what she needs. Managing the mask - positioning, leakage, dealing with condensation, dry eyes, shifts in position are things we have to readjust to.

But it's Vera who has the most adapting to do. From a weightless silicone mask, she now finds a huge hard plastic THING on her face. She can no longer touch her mouth. She taps the plastic, still trying to figure out what it is.

As there is no full face mask designed for kids (correct me if I'm wrong), we have to look for an adult nasal mask, and hope it fits her nose and mouth. The hospital offered us the one in the picture from Respirionics, but we are searching for others to see what fits Vera best.

New stuff to get used to again. Just when I was looking forward to going back to cruise mode.

Vera, you sure keep us on our toes all the time.

Little D

When Vera was warded for Pneumonia last January, in the bed adjacent to hers was Little D. A puny little girl whom we learnt had problems gaining weight. She was 3 years older than Vera, but smaller than her.

Time time, Vera is warded for Pneumonia again. Coincidentally, in the bed opposite hers is Little D again. Only that she ain't little no more. In just a year, she's overtaken Vera in size. She even has chubby cheeks now. I'm not sure what she's in for, but one thing hasn't changed.

Little D does not have any visitors.

I hear that she has a condition that causes water retention and needs to walk and exercise to help clear the fluids. Without someone around for her, the task falls on the nurses, who are already so busy with their duties.

Over the last 7 days, I've watched her eyelids increasingly swell till they're bulging, threatening to purse her eyes shut.

At first she could still peep through one eye. I brought her a board book. She smiled and flipped the pages delightedly.

Today, she could barely track. So I gave her a tactile musical toy, and she clung to it, pressing the buttons.

The nurses, cleaners, and other parents come to her and do what little they can to engage her. But when all are busy, she slumps in her stroller, the darkness closing in on her.

It makes me so sad. Here we are doing complete 24-hour shifts for Vera, and opposite her is the exact opposite.

WHERE ARE HER NEXT OF KIN? Not a single one? An uncle, aunt, grandparent?

What's the point of doctors and nurses trying so hard to help her, when her loved ones don't even pay a visit?

If they don't come see her quick, I'm afraid she'll soon not be able to see them either.

The Hospital That Cares

You know your child is with the right hospital when...

1) The Head of Paediatrics squats to explain to you cos you're seated carrying your child.
2) When you say the corridor ceiling light is glaring for your child, they get someone to take a bulb out.
3) Your child gets a cake on their birthday.
4) The doctor tells you what they are doing is only 10% and you are doing 100%.
5) You encounter many conscientious, no-attitude nurses who are serious about their jobs.
6) A nurse suctions your child even though she's knocked off half an hour ago, because you asked.

National University Hospital rocks!

This Tri-er is Three!

The lovely balloons say it all.

It was a good day - a cake from the hospital, a young doctor drops in to wish her 'Happy Birthday' which was nice, Auntie Jamine and my aunt J and her teachers from school visit.

We are still not on the road to recovery, and just have to be patient and hope for the tide to turn soon.

This evening while I was cradling her, she looked into my eyes and started patting me on the chest. As if saying, 'Good job, Mummy."

What a welcome sign that was after 8 days of rather monotonous nursing care.

Thank you for all the birthday wishes.

Three cheers for you, Vera, for coming this far - hip hip hooray, Hip Hip Hooray, HIP HIP HOORAY!

Spiking a Fever

What had been a low grade fever for the past few days spiked to 39.8 deg C this evening.

It prompted the medical team to fix a plug on her to administer stronger antibiotics and also to conduct more tests. So far we know it isn't pneumonia, and her blood count is normal. We still do not know what the nature of the infection is.

Meanwhile, there are no smiles and all efforts at cajoling her fail. All she does is writhe in bed or sleep for short periods from sheer tiredness post-suctioning. And poop each time she coughs due to bowel incontinence.

It's unlikely she'll be home for her birthday.

P.S. Just when things were improving for Vera physio-wise, we switch to the opposite direction. One minute up, next minute down. It's hard to prevent my mood from swinging like this Trisomy journey.

Turning Three...In Hospital

Two days shy of Vera's 3rd Birthday and she's in hospital.

We'd been suctioning at home for 5 days and could not keep up with her secretions. Usually we manage at home if there isn't a fever. But this time there was, so to hospital we go. Just to be safe should things take a turn for the worse.

Her doc said we could bring her in 2 days later if she wasn't any better, but we had to go through emergency. Another round of repeating her story, just to get her warded. And on a Sunday. I thought it's unlikely we'll do any better at home, so we admitted on the spot.

Having Vera in hospital is good. Any changes in her condition and the team can respond with appropriate medication there and then. And her sats are being monitored (we don't have an oximeter at home).

But it is more tiring for all of us. I do 11 hours in the day, Beth does the night shift. With Vera so active and hooked onto the bipap, you just can't leave her unmonitored for long.

And with Diarrhea in full swing now with the start of anti-biotics (okay it's not as bad this time with the new anti-biotic Unasyn we're trying out), but still, enough to make me feel like an automated diaper-changing machine.

Vera is extremely tired from laboured breathing, sleep deprivation, frequent but necessary suctioning, but not tired enough to stop fighting us. I most dislike "hospital duty". I dislike struggling with Vera the entire day. I dislike seeing her bum bleed. I wish someone would take my place. But yet, I know I need to be there to work with the team to get her better fast.

Vera spent her second birthday in hospital. I'm so hoping she'll be home for her third.

Oral Hygiene: Going Overboard

Once in a while, I get desperate about Vera's oral hygiene. Or lack of it.

There are yellow patches in between her teeth. Plaque. I smell her bad breath and see a yellow-caked tongue. Then I get carried away.

The last time, I whipped out the toothette (oral swab) and started cleaning away. Her secretions increased significantly, a sign of micro-aspiration*. Lots of suctioning ensued.

Yesterday, I whipped out the finger brush and even put toothpaste on it. She must have swallowed the bubbly and micro-aspirated again. She'll be dealing with lots of phlegm in the coming days.

You'd think that I'd learn but I don't know why I don't.

*Micro-aspiration means some fluid gets into the lungs, and this causes more phlegm to be produced by the body.
p.s. Anyone has any ideas? She refuses Spiffies toothwipes, and clamps down on our finger so hard it's painful even if we're wearing the rubbery finger brush.

Turning Three

In the blink of an eye, Vera will be turning three.

Oh my Three.

As in One, Two, Three Go!

As if, once she hits the mark, there's no stopping her.

Unlike when she turned two, I've been reflecting on her life a lot more this time.

The first year
We were like on a 'Cruise-to-Nowhere'. We didn't know where the destination was. We were mostly alone in our cabin with Vera. She grew amazingly well, never fell sick once, it was good.

The second year
The seas got rough. Vera was in and out of hospital, and we struggled to learn how to cope with her respiratory issues. As the boat rocked, me and my bulging tummy strove to balance between preparing for Daen's birth, and managing Vera. More people come to know about, and love her, and our world expands again. Having Beth to care for her was a blessing.

The third year
Daen comes into our lives and things reorder again. In a happy way. More people come into our lives thanks to him and he had been good for Vera. We are more confident of handling her illnesses with suctioning; she had a minor surgery (adenoids & tonsils) with major improvements to her well-being; with that has come improvements to her physical abilities - sitting, rolling, turning, standing.

As her third year draws to an end, it does seem like we've reached some sort of cruise mode. Daen's now up on his feet and much easier to care for, freeing up therapy time for Vera.

What a journey it has been and will continue to be.

Vera is where she is today because of all the angels sent her way:

The doctors and surgeons - whose deft hands gave her a way to eat, a beautiful smile, better breathing;
Her milk mommies - who spent hours expressing milk for her for months;
Her Mai Mai (aunt) - who looked after her for 3 months after birth;
Her wonderful grandma and greatgrandma and grandaunt - showing that age is just a number when it comes to love;
Her teachers and therapists - who work hard at helping her improve
Her caregiver - who gives up sleep night after night so Vera would get more of it.
Oh, and not forgetting the online angels near and far who have kept us in your prayers - Thank You.

We live in awe every day.

p.s. Till today, we still get comments from new people reading Vera's blog. It always brightens my day to 'meet' new people wanting to learn more about her life. (Of course, our 'old' friends - you know who you are : ) - the ones who never fail to cheer us up with encouraging comments are always treasured!)

The Less Abled

Some people prefer to, or find it easier, to ignore Vera.

After all, unlike a bouncy, chatty toddler who clambers all over you wanting to play, Vera just well, sits there.

She can't greet you if you don't bother to greet her.

She can't say charming things to illicit exclamations like 'Oh you clever girl!'

And let's face it, she isn't your 'pretty pig-tailed girl'.

All in all, not much incentive to pay her any attention. Why bother talking to her since she won't understand anything you're saying?

Then there are those who are genuinely touched and SEE Vera beyond what she is. They come up to her and talk with a tenderness in their voice.

You can tell so much about a person by how they treat the less abled.

How Vera Laughs

Can Vera laugh? Yes.

She rarely does, so it's like striking gold. The last time she laughed was 8 months ago. Yes. 8 months.

This is what it sounds like.

The little porky responds so spontaneously to social interaction. It is clear that she knows we are trying to reach out to her. It is obvious that she enjoys it. Just like any normal kid.

When she vocalises her delight, she fills my heart with immeasurable joy.

This Trisomy 18 babe whom isn't even supposed to be alive, is sitting here giggling at my antics. The miracle of it isn't lost on me.

She is the one smiling, but we are the ones learning the meaning of true happiness.

Expecting Adam

I have just raced through the book 'Expecting Adam' by Martha Beck in one sitting.

Uncharacteristically putting aside 'Therapy Time With Vera' and Daen's cries to finish it.

As I have found with most books that truly grab me by the collar, no one introduced me to it.

It was stumbled upon.

I was on a usual library round gathering boardbooks for Daen.

But one day, for no reason at all, I thought, 'hmmm, maybe I should read a book about motherhood, read a book for Me'.

One of them was called 'I Love Being A Mom'.

After a quick read through the collection of mothers' anecdotes, one essay stood out: It was by a mother recounting the experience of expecting a Down Syndrome baby. The twist was that both she and her husband were Harvard graduates. Read: Highly intellectually driven people being told their son would be 'retarded' (the word she uses).

Often times I've scouted for books on special needs parenting, hoping to find something to identify with, to gain some sort of catharsis for the journey I had gone through with Vera's birth, but the search never turned up anything close.

And now, after almost 3 years, I find a book that speaks about a time which I still have yet to fully talk about - when I was expecting Vera.

I opened the book, but in fact, it has opened me.

From it has sprung a reservoir of new thoughts and realisations about having Vera in my life.

Suddenly, the 'loose ends' - the part of Vera's story that has so far been in cold storage, all dash and cram themselves into the short term memory box of my brain.

I found myself with a tightness in the chest right from the start of the book. Midway through, it felt increasingly like I couldn't breathe. Reliving the emotions of the prenatal period was getting too much to bear. Then, once I got to the part when the diagnosis was revealed to the parents, the catharsis began. I shall not spoil the story for anyone, only to say that there was a line in the book that hit me with a boxing glove and a tequila shot of tears.

I've been anticipating, 'Expecting Adam' for a long time coming.

Happy Feet

You know the penguin movie 'Happy Feet'? Looks like Vera's got them. She's been moving her legs more in the last 2 months, entertaining herself with them.

Yet another positive outcome of the adenoid and tonsil removal surgery!

No More A Baby

10 months now

All too soon, Daen's a baby no more.

I had been anxious to get him used to taking his bottle and falling asleep by himself. And now that he can, I miss feeding him to sleep in my arms.

Last night I tried to do so and he refused, preferring the comfort of his bed now. The irony!

One day he's 5 months, the next he's 10.

With Vera, not much changes day to day, and you can enjoy her at the stage she's in tomorrow and the day after.

With Daen, blink and you'll miss it.

His Name is Today
“Many of the things we need can wait.
The child cannot.
Right now is the time his bones are being formed,
his blood is being made, and his senses are being developed.
To him we cannot answer 'Tomorrow.'
His name is 'Today.'"
- Gabriela Mistral, Chilean Poet (1889-1957)

How We See Vera

One time, Ian and I caught Vera in the mirror and were surprised by how disproportional her eyes looked.

Her reflection

"Why does her right eye look so small?"

Well, because they are. Mirrors don't lie.

"That's probably how others see her," Ian said. With one significantly smaller cross-eye.

Amazingly, our parent-tinted lenses have compensated for the difference in our brain: we've been rewired to see less of the disparity.

Love, has certainly blinded us to the appearance of her many other physical shortcomings.

Do I see "Abnormal" in her low-set ears? No. Her lop-sided mouth? Her extra digit? Her rocker-bottom feet? Nope.

To me, these are what make Vera VERA. This combination makes her unlike any other toddler in the world.

I remember back in the early days when I would shoot poisonous 'what are you lookin' at' arrows at people who glanced at her in the park. Now, I'm too busy getting her gaiters on to bother.

There is a powerful sense of release and freedom when you accept, fully accept the special child you've been given.

Your eyes open and see beauty.

Little Porky, eyes a-gleaming

Bye Bye Stander

"stepping out in style"

"going down, down, down..."

"for some fresh air and greenery"

School's in and the loaned stander has to be returned soon. What a pity, as Vera really enjoyed being on it. From 5 minutes when we first started, she can now take it for 10 minutes. She taps on the metal frame (above) and touches the wheel by herself.

Knowing that it'll be gone soon has got me into "last-minute homework" mode. But it's homework more enjoyable than any I've done as a student!

Vera Loves Signing

Vera is very visual-led.

Although she can hear, nothing's stopping us from using the tool of the hearing-impaired to communicate with her.

And we've found that it turns her on.

Here, my uncle signs to her and she's so tickled. She loves looking at our moving hands. I've had similar response when signing nursery rhymes to her.

I've done up this manual as well of simple daily signs - sleep/bathe/sit etc.


Perhaps one day she'll get what we're trying to say.

Vera Watches Daen

Does Daen know who is 'chea chea' (elder sis in chinese) ? Yes.

Is Vera aware of Daen's presence? Yes.

Do they know how to play together? Not yet.

Does he know how to 'sayang chea chea'? Not yet.

Does he like to climb onto her? Most definitely!

Mouth Closed...Finally!

The beautiful result of Vera's adenoid and tonsil removal is that she can now close her mouth.

In the past, Vera had her mouth open all the time - she was a mouth breather since birth.

These days, she keeps pursing her lips and constantly blows bubbles in and out. Finally, she can play with her saliva!

It's a sign that her nostrils are clear and she is breathing easy.

The "sound" of her silent breathing is absolutely music to my ears.

A Better View

This picture may seem like nothing out of the ordinary, but for me, it has particular significance.

Here, Vera in the upright position of her stroller.

Normals kids take this position from about 6 months. But for Vera, she did not tolerate this position for the longest time. She would arch in protest, or bend like bamboo in it. We always had her one notch down, semi-reclined. Her view would be nothing but high rise and sky.

It was always a rush - through grocery shopping, eating, etc, "before Vera gets uncomfortable" in the pram. She had no interest in the surroundings, and outings weren't much fun for us either.

Now, I guess her increased strength and tone has enabled her to take this position for the length of a walk in the park. It has made the exercise literally a stroll. She can now see people, pets, bicycles, cars, children running around.

It is so wonderful, just to watch her watch the world go by.

Happy New Year 2011

There was a mini New Year Countdown celebration just a stone's throw (less than 100m!) from our apartment. Since the little girl was still wide awake (as always), I brought her down just to catch the fireworks. I hope she enjoyed it, the same way she likes sensory time in school.

This is her second time seeing fireworks. Her 1st time was during the end of 2008.

It was at the edge of the neighboring town, but still good enough to view after a short stroll. May was asleep and I was covering the night shift. Vera was having a string of late nights back then. Instead of continuing to try to rock her to sleep, I decided that it was something she shouldn't miss. No doubt, she seemed more excited at that time.

In case u are wondering, May and Daen were both knocked out by 9pm after his last feed. Too bad. Maybe we'll try harder to wake them up... next year. :-P

An Eventful Year

Here we are at the end of 2010...it was so packed with ups and downs I'm actually heaving a sigh of relief that it's nearly over.

There was the exhilaration of Daen's birth, coupled with the strain of numerous hospitalisations for Vera, and the initial tough months of caring for a newborn.

We've arrived in a better place than at the start of the year I believe:

Daen's out of infancy and now a bubbly active baby, Vera's breathing is better, we now know how to manage secretions at home, and I'm able to enjoy more time out, thanks to great help from Ian and our immediate family members.

And Vera recovering just in time for Christmas get-togethers was a real bonus.

The fact that she is HERE today with us, is reason enough to celebrate, any day of the year!

Vera doing her stand/dance

Vera seems to recognize an old friend who used to visit us with her kids
before Vera turns one

Daen with his godma!

Costly Medical $upplies

I read a post by a mom of a special needs child

Medical Suppliers Profitting Off Terminally Ill Chidren - The Rotten Vermon Stench Of The Medical Supply Business

...and I share her sentiments.

While in Singapore (thank goodness) we have a government that provides subsidised medical care for Vera at affordable rates, medical supplies are not covered under insurance (no company will insure Vera anyway), and parents have to get them direct from suppliers.

While I understand that a bipap machine can be costly at $6000, it is the pricey consumables that get my eyeballs rolling.

Take this for example.

Bacteria filters - 1 for $5

This device filters the air before it blows into Vera's nostrils. Due to air pollution from construction and the highway nearby, we have to change it every 3 days. That's $50 a month.

I don't believe this piece of plastic and paper can cost $5. There is no bulk purchase price.

Melatonin Didn't Work

Okay, it was a long shot.

Desperate for a 'cure' for Vera's erratic sleep pattern, we decided to give Melatonin a try. Our respi doc had said he didn't think it would work.

I had response from many moms of T18 kids that responded well to it. Most said their child settled more easily and slept through the night.

We tried a very low dose on her. It's 3mg for adults. We gave her 0.75mg.

It made her drowsy, but more cranky as well. She would cry and last feed was difficult. And she still woke up in the night.

After about a week we discontinued it.

And guess what, Vera started to sleep through the night.

SHE HAS SLEPT THROUGH THE NIGHT FOR 5 CONSECUTIVE DAYS NOW.

This is a breakthrough for us after months of her waking for hours in the night.

When we've done everything we could think of, we get a break.

The only thing is we've been suctioning her regularly before bedtime - could it be that it clears her airway for better sleep?

Who knows. I pray our good luck continues.

How Do You Do It?

To moms of Trisomy 18 or other special needs child and a younger baby: How do you do it?

I knew it would be tough: but this is pushing my limits.

When Vera is well, it's already a stretch. The bad news is while the adenoid and tonsil surgery has improved her breathing, it hasn't improved her sleeping. She's still awake 4 hours in the middle of the night. Which means someone (Beth) goes sleepless as well. For nights on end.

Now, she is sick.

She spent the whole of last night wailing. Beth has slept all of one hour and is hardly functioning.

We're bracing ourselves for another round of "wailing-suctioning" for the next few nights.

If it's just Vera, and 2 caregivers, it's manageable. One can take the night shift, and sleep in the day. The other the day shift.

With another jumping-scooting-prancing-weaning baby in tow, I find that I am not able to take over Vera in the day.

Anyway, whining aside, I'm thankful for a fully committed caregiver and a hands-on hubby. I am not alone.

The juggling continues.

No Time For Vera

I haven't been posting because there's little time for it nowadays.

With a tot that's just found his feet, wanting to get out and see the world and me navigating the whole business of weaning, I find myself having little time for Vera.

Their schedules don't match either, which doesn't help. I have to match Daen's sleep/wake routine to keep up with him.

Beth, Vera's caregiver matches her routine to keep up with night wakings.

Some days, I only spend an hour actively with Vera, even though I'm at home.

Vera used to get loads of therapy time when I was pregnant. Now, it's only when Daen is asleep and she is not tired, feeding or after a feed. So when the timings and moods allow, we're out the door with the stander in double quick time! Vera loves going out on the stander by the way.

Now, Vera spends more time by herself in her reflux bed, just listening to music. While Beth busies with the chores and I'm with Daen. One of the reasons she's grown fatty!

The other reasons:

1) Overdose of phlegm-dissolver Fluimucil (oh did you know it's unbelievably sweet?) We've cut back on it since.

2) Night feeds - we use them to settle her cos it works. We've cut back on this as well.

Hopefully, we get a trimmer Vera in a few months time. Now we can call her by her old nickname - Porky Vera : )

Pre-natal Ultrasounds

I read a blog link that Lily's mom posted to share and it broke my heart.

It is about a Trisomy 18 baby named Jedidiah who has recently passed away.

It always brings me to think back on the double edge sword of pre-natal ultrasounds, the cornerstone of Obstetrics and Gynaecology.

Is "knowing" always good? Does "knowing" help parents who have a poor prenatal diagnosis, or work against them? Does "knowing" help doctors prepare to save the baby or prepare not to?

In the old days, people just popped their babies out on the day itself, not even knowing the sex beforehand. Babies had the "protection" of anonymity till they arrived in the flesh. No one, could make any comment or judgement on them till they made their presence felt.

I'm thinking, how did we get to this day and age of always "wanting to know the future"?

If ultrasounds had showed up Vera's Trisomy 18 early in the pregnancy...she would not be here today. That is a fact. We would most likely have been strongly encouraged to abort her. And we most likely would have.

We've been conditioned by modern medicine to think the world of pre-natal ultrasounds.

Sometimes even when we think we know, we don't. Medicine doesn't always have all the answers.

Some things are good just knowing in our hearts.

Bench Press

Vera has improved on her sitting as well. We continue to let her practise at home with this height adjustable bench. Of course she does this for less than 3 minutes, but it's already an achievement for her.

Someone else has found use for the bench as well...

"Ah ha!...now I can climb onto the sofa!"

To The Mall

I suddenly had the drive to take both kids out to the mall.

I've been unwell for so long and with surgery and weaning there just wasn't much "outing time".

Nearly 8 months old... after his 1st hair-cut

3 years old in 3 months' time!

We had lunch at KFC. It was Vera's first time visiting The Colonel, and she marked the occasion with a "big job" there and then. So did Daen.

We had poop smeared all over - their clothes, our clothes, carrier, pram.

It was quite an experience.

But it's a good thing we got out - Vera and Daen need the stimulation. It just happened that their feedings coincided and we went on the spur of the moment.

Thank goodness we did the "Finger Lickin' Good" BEFORE we had to clear the poop!

School's Out Stander's In

It's the holidays but Vera's got homework.

Her head and trunk control has improved enough for her to be put in the stander, on loan from school.

Yesterday, she toured around the house for the first time. Today she checked out the corridor outside our apartment.

You can see the cogs in her brain working. She knits her brow in concentration and turns left and right to survey her surroundings. She makes an extra effort to hold her head forward.

I am so proud of her!

Silence is Golden

It's been 14 days since Vera's discharge from her adenoids and tonsils removal surgery.

After the 9th day, the secretions that seemed endless suddenly stopped.

Since then, we've observed a clear difference (literally) to her breathing.

It's quiet. Okay, some stuffy sounds on and off, but generally quiet.

We've lived with Vera's noisy breathing for so long, the silence is so refreshing.

It is a far cry from the Vera just prior to the surgery - writhing, fussing, arching, tiring easily - because she just couldn't breathe with the adenoids blocking nearly 90% of her airway.

Oh how grateful I am to the doctor who did this for her! You've given her a new lease of life.

How long will the silence last? We don't know.

Will her reflux (supposedly severe) cause the adenoids to swell back? Don't know.

But we're not wasting any time. We're getting our newly energised pumpkin onto the stander pronto!

Goodbye Bard, Hello Mickey

This is Vera's new button.

After nearly 2 years of dealing with the Bard and its various issues, we finally made the switch to a Mickey.

Here's a low-down of the pros and cons.


What we like about the Bard:

1) It is flat and flushed with the tummy. Good for tummy time.


What we don't like about the Bard:

1) There is a one-way valve inside that loosens with wear and tear. It can also be damaged by over-venting over time. Alas, Vera needs frequent venting because the bi-pap blows air into her tummy.

2) Particles (powdery suspension medicines, milk that's not dissolved properly, fibrous fluids, can clog up the holes if water flushing is not done thoroughly.

I believe this is what happened this time round.

Medications that Vera was on post-op clogged up the button and forced the valve shut. It because almost impossible to syringe more medication through. The more force we used, the more damage it was causing to the valve.

After I did some trouble-shooting with Coke, the blockage cleared, and we were able to feed medication without resistance. But by then the valve was probably gone.

Once the feeding tip was removed, the button would leak.

I had hoped the problem would resolve by itself back home. Afterall, it was a relatively new button, just 3 months old.

But today, fluid started to pour out when the flap was opened. From experience, I had a feeling it was a goner. So to hospital we went.

3) Each time the Bard is replaced, we have to deal with over-granulation for at least 2 weeks. Burning with silver nitrate, sloughing it off, watching it bleed...yucks. We've done it for 3 rounds. Today I just thought: No more.


What we like about the Mickey:

1) No more valve problems - there isn't one!

2) No more clogging - I don't have to freak out over medications causing blockage (my sanity back!)

3) No pain for Vera during replacement.

What we don't like about the Mickey:

1) It protrudes more than the Bard. We'll have to wait and see if this will interfere with Vera's tummy rolls, which she does quite a bit when left on her own.

2) The water-filled balloon can burst or deflate. When that happens, the button will pop out. Milk will be EVERYWHERE. Bed, car seat, wherever. However, I will be able to learn how to replace it on my own. Or we can tape it down bring her to the hospital to get it changed.

3) The feeding tube is short. Vera's hand can easily swipe the syringe and causing spillage.


Well, I guess it was a case of "give me something, anything!" because the stress of dealing with Bard problems was just getting too much for me.

It's Vera's lifeline - she takes nothing by mouth - so I do freak out a bit when there are problems with it.

I'm under no illusions that there won't be problems with the Mickey. But fingers crossed we have a better experience with it.

Vera's Teacher Visits

Vera gets a visit from her school teacher, Siti, during her recovery post-op.

She is so lucky to be in Rainbow Centre, a special school that where the teachers are passionate and committed to helping special children like her.

When I first brought Vera to school when she was 12 months old, I found it was just as therapeutic for us as for her.

Bringing Vera to school made me feel that she was ACCEPTED, more than that, that she was LOVED wholeheartedly.

Here, I felt more 'normal', that there were other families in the same shoes, struggling like I was, coping like I was. And that there were people just as keen to help Vera as I was. Suddenly, her problems seemed shared. And anything shared is always good. Joy especially.

Which is why I still bring her to school instead of let her go by schoolbus with her caregiver Beth. And because I can't leave Daen at home, he tags along too and soaks in all the positivity.

A special school indeed don't you think?

The Gift of Trisomy 18

Trisomy 18 takes away so much from parents.

But it has given me one thing, and it is this:

Each night, I look at my girl and love her as if each day is her last. It is a wide, wonderful, full-force gush of lurrrve. (It is something I do not experience with Daen.)

C'mon, she's doing well, don't have to be so drama, some say.

Well, I'm afraid that's what life with Trisomy 18 is like. Intense highs and lows. Emotions magnified to their extremities.

Suctioning 201

Suctioning 101 described our first forays into the icky business.

Suctioning 201 details how we've modified our technique to the "challenge" from Vera.

First step: Vera is bundled up like a mummy.


Vera looks at me with poisonous eyes. I don't like getting this,
she looks like she hates me! But there's no choice.
I wear a mask to hide my face. Maybe I need funny glasses as well...


She takes one look at the apparatus and sticks her tongue out in defence. Clever girl.

Vera grits her teeth. Mummy tries using a spoon like a spanner.
It's a split second manoeuver, waiting for her to open just wide enough
for me to slip the spoon through.


Then comes the tricky part: Curving the catheter down her throat and down deep,
as GENTLY as I can, by waiting for moments when she relaxes her trach.


Finally, letting her rest with O2 in between tries.
She's tired, but all ready to put up a fight in the next round.