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.

Life Lessons from Trisomy 18

Without weakness,
how do we find strength?

Without darkness
how do we see the light?

Without sorrow
how do we savour joy?

Without silence,
how do we learn to listen?

Without fear,
how do we learn to be brave?

Without death,
how do we treasure life?

Without loss,
how would we know what we have gained?

Back (Home) To Suctioning

Yes Vera is back home.

And we're back to lots of suctioning. Apparently it is the body's reaction to the wound sites. The copious amounts of secretions are expected to last at least 14 days. We're at Day 6 (only!)

You've heard all about how we and Vera dislike suctioning so I won't elaborate further.

Just to say that I'm glad I've reached a proficiency level to be able to do it as "productively" as possible.

There is however, a satisfaction that comes from seeing Vera struggle. She used to cry. She doesn't anymore. Instead, like a trapped crab, she uses all her strength to fend us off, clenches her teeth like a crocodile, and stares at Me The Catheter with poisonous eyes.

This is my baby at her feisty best.

"This one ain't going down without a fight," I smile to myself.

At this point, it is premature to say that her breathing has improved. We'll have to wait till the secretions clear.

The Purpose of Life

When I was in high school during a Moral Education lesson, I remember the teacher asking us:

"What is the purpose of our lives?"

In Chinese: "Wo men huo ze gan she mo?"

I remember it distinctly because no one had an answer. Neither did the teacher provide one.

'Isn't the teacher supposed to give us an answer when no one knows it?' I wondered then.

The question stuck in my head. I mulled over it along the way.

Is it to earn lots of money?
Is it to win lots of awards?
Is it to see the world?
Is it simply to be happy?

20 years later, the answer reveals itself.

The purpose of my life is to help two little people who need me.

To be Vera's care manager. To be her voice. To show naysayers the day-to-day reality of this happy (and unhappy), responsive child behind the Trisomy.

To teach Daen how to eat, poo, talk and grow into a good person.

To perhaps also help others who are on the same path we've trodden...mothers longing for a VBAC, parents of a T18 child.

And what's the purpose of Vera's life?

For a start, she's shown me the answer to the purpose of mine.

"I long to accomplish a great and noble task,
but it is my chief duty to accomplish small tasks

as if they were great and noble."

Helen Keller

"Umareru" (To Be Born)

"Umareru" © 2010 "UMARERU" PARTNERS LLP

Director: Tomo Goda Running time: 104 minutes Language: Japanese

Opens Nov. 6, 2010

Finally a documentary that features among others a couple with a Trisomy 18 baby. It is showing in theatres in Japan starting tomorrow. It's small steps like these that will shape public perception/awareness of babies and families with the condition.

Wish I could watch it...

Home Soon

Vera was weaned off Morphine last night (and her neck IV!) and seems to be managing the pain pretty well with Ibuprofen and Paracetamol.

She was in a good mood after 2 knock-out naps in the morning. Clapping her hands, tapping my face, even doing her secret training a couple of times. She managed to cough out her phlegm. Her sats were around 95% most of the time, and was thus spared from her "much-hated" suctioning.

No signs of blood from her adenoids and tonsil sites, a sign that they are healing well. If her bowel movement is good tomorrow, we will be heading home!

Out of PICU

Just to say that Vera is out of intensive care this evening, 2 days after the operation.

On hindsight, it was a blessing in disguise only the adenoids surgery was done, as doing the fundo as well might have put her in more discomfort than she can handle - (imagine pain in your nose and throat and tummy). The fundo is KIV for now.

Yesterday she experienced quite a long period of desaturation even on the mask and with oxygen support. This was due to copious amounts of secretions.

Today her sats are better, which is why they have transferred her out.

It remains to be seen how much of a difference the surgery will make to her breathing.

Fingers crossed.

Thanks all for your concern and prayers sent her way.

Out of OT

Just to say that Vera is out of the OT and has been transferred to the PICU.

The team experienced some difficulty in intubating her. This is not surprising, as the team at KK Hospital reported the same during her PEG/fundoplication op at 13 months.

The surgeon decided not to go ahead with the re-fundoplication, and to proceed with just the adenoid and tonsils removal.

We had hoped to have both done so as to save her yet another round of needle-poking. Well, perhaps it's a blessing in disguise, as we were not too keen to have open surgery on her tummy for the re-fundo.

(With her tummy untouched, it means she can get onto the stander sooner yey!)

The team will reassess her reflux again down the road and then decide then on whether a fundo is really required. Perhaps with more tests done.

I am so looking forward to her breathing improving once she recovers.

Waiting

It's a Sunday and we've settled Vera into her hospital bed. Her op is tomorrow morning at 830am. Fingers crossed all goes well.

The little girl weighed in at 11.3kg. She's gained 500g per month in the last 2 months. Way too fast.

Well, hopefully she'll lose some during her hospital stay!

"Do Not Resuscitate"

I was filling up the survey Barb sent me regarding hospital care for babies born with Trisomy 18/13.

I went back to take a look at her medical records and this is what I found:

"In the event of cardiac arrest, baby is NOT FOR RESCUSCITATION."

Not for rescuscitation.

In block letters for emphasis.

Even though upon discharge, Vera was in no apparent grave situation.

"Condition on transfer quite stable on room air."

There was no mention of surgery options to address her large PDA. Nor follow-up tests to ascertain if she did indeed have central or obstructive sleep apnea - what would cause the much-feared "turning blue". We were not taught to give CPR if she "turned blue".

We were asked to sign a DNR and we did. We were told that it is valid for 48 hours.

I'm afraid that this is the protocol of most hospitals in the world for Trisomy 18 newborns.

Standy Stand

Yesterday Vera's PT teacher May strapped her in the standy for the first time and wheeled her to the classroom.

I was caught by surprise - to see Vera standing alone albeit with support was simply wonderful.

She looks so strong - was my first thought. She was surveying the surroundings with full concentration from her new vantage point.

We will get to rent this over the school holidays to let her get more standing time at home.

I can't wait to bring her to the park in this. Hopefully, she will recover from her surgery quickly!

Recently Taken

I've been unwell the last few weeks hence the lack of postings.

Getting better now, and just in time to rest and enjoy a few more (precious) uneventful days...before Vera goes for surgery in 5 days' time.

Meanwhile here are some latest pictures of us chilling out with the kids - Vera's hazy eyes have cleared so much more that I'm pretty sure her vision has improved. She's put on quite a bit (on normal milk and not Pediasure) and now sports a paunch. Daen's 7 months now complete with chunky thighs and already pulling himself to standing.

Awake In the Wee Hours

Ever since Vera came back from the hospital, her sleep pattern has changed again.

Past:

Awake: 3-6am
Sleep: 6-10am
Awake: 10-4pm
Sleep: 4-6pm
Awake: 6-12midnight
Sleep: 12-3am

Now:

Awake: 3-6am (this had not changed)
Sleep: 6-10am
Awake: 10am-9pm (at least she doesn't take an afternoon nap)
Sleep: 9pm-3am (at least she goes to bed earlier and gets a few good hours)

Beth (who sleeps with her) reports major nose block at 3am.

Here's my theory:

Our dear friend knows that between 3-6am (when her muscles relax the most) is the time when she has most difficulty in breathing. She has learnt that by being awake, she can breathe better (SpO2 100), and avoid the problem. So she wakes, sometimes happily clapping her hands.

It's her survival instinct at work.

I can't wait for the surgery to take us out of this impasse of her nose obstruction. Seeing her unable to breathe properly is so hard. It stresses me out because I know, much as she is gaining weight and looking healthy, she's not gonna last long breathing the way she does day in day out.

We see the GI surgeon today to see if he can do her fundoplication (to nail the reflux) together with the adenoids & tonsils surgery (by another surgeon) coming Monday November 1st.

At least she gets 2 things done with one GA.

I know I shouldn't be stressing, but what mother will not be worried when her child goes for surgery?

Under Seige

The haze is back.

It was bad when Vera was smaller. This time it's even worse.

We're holed in at home. Vera is cranky from the heat and a blocked nose. Daen is cranky from not being able to go out. I'm coughing for 2 weeks now.

It's no fun.

Please rain.

Deep Suctioning

Vera was hospitalised recently.

Why?

Mainly because I didn't know how to get the phlegm out from her throat. She refused to open her mouth.

I thought the nurses would have better luck.

Also, it's just easier to walk away and spare myself from hearing Vera kicking and crying, then return to comfort her when the job's done.

One time I watched: They struggled with her jaw-clenching too.

So I thought of a solution: Let her bite on a rubbery baby spoon like a spanner - it would leave a gap just wide enough for the catheter to go through.

Also, I realised that I would just have to learn this "deep suctioning" that the nurses do. We can't be spending good money admitting her just for "suctioning service" every time she has a bout of increased secretions.

In my life, I've had to do things I didn't like doing. Like go for piano exams, get a wisdom tooth pulled, drink ginseng. Yeah, trivial stuff right. Most of the time, I do stuff I like to do.

Now, I find myself doing something I absolutely find no pleasure in, up to 3 times a day. Seeing Vera look in fear at the catheter she's already learnt to recognise. Seeing her cough even before I start as she knows what is coming. Switching from 'mummy mode' to 'nurse mode' so that I can get the job done effectively.

After every session, I know I've helped Vera to breathe easier and feel less congested. It feels good to see all that yucky phlegm come out. But I am worn and weary from the effort.

It's not easy to work like a nurse when you feel as a mother.

Sigh. What we have to do to love a child.

That Surgery Feeling

When I play with Vera, I have the 'surgery feeling' now.

It's the 'I know what you're in for but you don't have a clue' feeling.

It's the 'I wish I could pre-empt you but there's no way I can' feeling.

It's the 'I decided on your behalf to put you through a lot of pain and you didn't have a choice' feeling.

It's a suckie feeling.

Sometimes it's so hard being a mother.

Adenoid & Tonsil Removal Surgery

Why is it that with the Bipap, Vera still has laboured breathing when sleeping?

The ENT doctor took a look into her nostrils and guess what: Her adenoids and so swollen they are covering almost 90% of her airway.

Which means the Bipap is only able to work on pushing air through 10% of her airway. Not surprising that it's not effective.

The doctors are recommending surgery to remove her adenoids and tonsils.

This is what I googled:

"The most common reason for tonsillectomy and adenoidectomy is to remove enlarged tonsils and adenoids which block a child's breathing passages. The nose may be so blocked by the adenoid (which is located behind the nose and above the back of the throat) that a child can't smell, has a congested nose, and talks like he has a cold all the time. If the tonsils are too large, a child may not eat well, taking only small, soft foods. The child may also have some choking and mouth breathing. Often, a child snores very loudly, may not breathe well while asleep, and may actually stop breathing for several seconds. If severe and not treated, this can put strain on the heart and lungs. It has been shown that removal of the tonsils and adenoids is effective in treating obstructive sleep apnea in children."

I am so glad that finally, there is firm link between her OSA and her ENT area.

Surgery is slated for November - very soon, yes - I am looking forward to having her breathe better but of course worrying about post-op, her recovery period, the horrendous diarrhea burns that is bound to come with antibiotics, and of course, the stress of hospital runs again.

Hospital Staff

Doctors are a hardworking bunch. So are nurses.

They work shifts. (I for one cannot bear the thought of working shifts. It messes up the body clock.)

They work weekends. (Weekends are for rest, for play, no?)

They work long hours. (My jaw dropped the first time I heard that ICU nurses worked 12 hours at a stretch.)

They are prepared to be recalled for critical cases. (Imagine being interrupted in the middle of your rest day with a 'back-to-work' call.

For the above reasons, I conclude that you must really really want to be doctor or nurse. This ain't some 'close-eyes-and-get-by' kinda job.

URTI No.2

Urti.

It's short for Upper Respiratory Tract Infection.

Vera is in hospital right now nursing one. Her 2nd one this year. (Okay, my bad for speaking too soon about her relative wellness.)

We know what to expect now - suctioning and more suctioning basically. All that gunk just has to get out before she can get out of hospital.

But this time, I'm determined to gain some headway with her sleeping difficulties.

Her caregiver Beth has been waking up every night for the last 4 months.

On a good night she tosses and turns fitfully. The mask shifts and covers her nostrils. (By the light of a lamp, Beth strains to check that it is in place again.

On a bad night, the airway blockage gets so bad she is rudely awakened, howling with sleep deprivation. She stays awake from 3-6am. Then knocks out thereafter till 10am.

I tried helping Beth out one night - staying awake affecting my entire system. My brain was a blur the next day.

So, I'm pinning my hopes on the good doctors at NUH to offer us some options.

She may be given Melatonin (as you mentioned Cathy, am I right?) She will be trying on some new mask that will fit her growing face. She's also having ENT take a look, and we'll see if removing her adenoids surgically is a possible way to go.

Lantern Festival

When Daen goes to sleep, it's Vera time. We brought her to join in the merry-making in the park. Once a year in mid-autumn when the moon is at its roundest, parents traditionally buy lanterns for their kids to carry around the neighborhood. You can see her tapping on the lantern below.

Proper Shoes

After searching loads of shops we finally found a pair of shoes that works for Vera. Once again, thanks to Auntie L.

It is high cut (to stabilise her ankle), has a soft but firm sole, and is velcroed (oh so easy to wear and take off). It is not bulky and heavy so Vera doesn't feel like she's lifting a brick while taking a step.

She wears them each time she stands (dances) now. I call them her 'dancing shoes'.

Reflux Bed Gift

Kay, my university friend and her group of scrapbooking mommy friends bought the Reflux Bed as a gift for Vera. It is such a nice gesture, and humbling to know that people who don't personally know Vera actually care about her.

Auntie Kay has been following Vera's blog faithfully. Although she is a mother of 3, she still finds the time and energy for her online nursingwear shop and various charitable causes.

Vera is settling into her new bed. We can tell she is more comfortable in it than in the makeshift one below.


She arches and turns less. Probably because it is softer.

We did a Barium study and X-rays found that Vera does indeed have reflux. Milk goes back up her oeseophagus during feeding. The drastic measure will be surgery (a repeat fundoplication to tighten up the stomach opening) or management of the reflux through positioning - hence the usefulness of the bed.

Now we are able to safely tubefeed her lying down (which has become more often) when she is tired and cranky. And we can let her rest (or let us rest rather) instead of holding her for up to an hour after feeds till the milk digests.


Thank you Auntie Kay and your kind mommy friends!

P.S. Another benefit of the bed...she seems to find it easier to pass motion when lying in it!

At Her Best

This is Vera at her best.

After coming into 2010 dealing with bouts of respiratory illness and then constipation, diarrhea, button issues...we approach the end of the year (oh so quickly) with Vera enjoying a period of relative 'wellness'. She is less tired, happier and er, chubbier. Executing turns with panache. Clapping her hands with glee. Dancing in our arms with joy. This is the Vera I want to remember forever.

Big Girl Now

She's a baby no more. With this hairstyle especially. She's grown tall too.

It's just so amazing to look back and see that she once looked so different.

I miss the 'little' Vera!

Baby Steps

Shoes. Check.
Rolly therapy stool. Check.
Pictures on the wall. Check.

We're all set to let Vera experience walking.

Besides standing, she's recently shown an inclination to put one foot in front of the other. So mommy quickly sourced for a therapy stool (thanks, Teacher May for the supplier) and got one custom made pronto.

She's gone on her first 'sightseeing tour' around the house. She's started looking at the pictures on the wall along the walkway.

It's such a great tool. It allows us to wheel her around, sitting in our lap. It's easier to move her from chair to mat and back as well.

A Career Switch

Just read this news about Mieko's mum leaving the broadcasting world and venturing into Special Education.

Mieko was an absolutely adorable girl with Trisomy 18 whose achievements really inspired me and drove me to do my best for Vera in the earlier days.

The news prompts me think about what I should do with the rest of my life. Should I continue in Advertising? Or should I too start from scratch again and delve into the world of Special Education? I've always loved to work with children...I taught briefly in a kindergarten and secondary school before. But is Vera the sign that I should be working in Special Needs? ...

She's Seeing OK

Orthoptic Test

Vera visited the eye doctor today. It's been almost a year since her last appointment.

She had an Orthoptic Test - they show her placards and note the response of the eye.

There's good news: Her bad eye is showing signs of more movement than at the previous visit. Her good eye is tracking well.

I was also impressed with new equipment to test her eye pressure.

Previously, it was a fat pen-like stick with a rounded tip that had to touch her eyeball to get a reading. (Who likes a pen touching their eyeball, right.)

Now, it's a gun-like thingie with a minute tip that shoots out in a split second to get a reading. Amazing.

Result: Pressure is normal. She is longsighted, but not short-sighted. So no need for glasses. Yey! Vera will probably yank them off anyway.

Surgery can correct her cross-eyes, but we won't be pursuing that as the change will be purely cosmetic.

And her eyes are beautiful the way they are, just because they are able to express what she feels and because they smile.

Hello Friend

Now that Vera's bout of secretions has sort of cleared, we're letting the munchkins have more together time.

They both seem more aware of each other's presence now.

Times like these are so wonderful...not busying with baby or medical care, just watching them do their thing.

Such moments make me think of how "it's all worth it." My days may be filled with Vera-&-Daen Things-To-Do, but that makes my life full. There is none of the emptiness I had experienced during my earlier career days.

Will Vera Walk?

I don't know.

We don't think so far. For us, it's one step at a time. Literally.

Does it matter if she does or doesn't? Actually, not really.

What matters is if it makes her happy. And boy, does standing make her happy. Taking a few shaky steps forward, also makes her happy.

Because it does, I'm gonna do what it takes to help her along.

First, we have to get Vera to stand on her own. And our little friend has always loved to stand.

From us supporting her at the armpits, she can now do it with us holding just her hands. It is the one activity that brings her much joy in her waking hours.

She enjoys shifting her weight around and seems particularly proud of herself when she tries to be more upright.

Alas, some of the characteristics of Trisomy 18 children are Club Feet and Rocker Bottom Feet.

Rocker bottom feet

As you can see in the picture above, Vera has a bit of the latter. The bottom is curved like a rocking chair. It prevents the lift-and-push forward, which is needed for walking.

This malformation result in the uneven distribution of weight, and thus causes inner pronation when she stands. But because the little girl enjoys standing so much (and we love to let her stand) the inner bone of her feet has started to protrude (pix below) to bear her weight.

Protruding bone

Her feet are a really strange shape as well. Longer that usual for her age.


To prevent her feet from continuing to develop in an abnormal manner, we have to get an AFO (Ankle-Foot Orthosis) custom made for her. This is something she will wear that moulds to her feet and is intended to control position and motion of the ankle, compensate for weakness, or correct deformities.

We are currently waiting for something like this to be brought in to the Singapore Foot Care & Limb Design Centre from the US, so that it can be custom fitted for young children like Vera.


It is made of softer plastic by Cascade Dafo, unlike the standard AFOs which are made of a harder, stiffer material.


We hope to get it done soon, so we can give Vera all the support she needs to begin standing on her own two feet.