09 December 2014

Early Xmas Present

I couldn't wait till Christmas to give Vera her present.


07 December 2014

Little Leona Goes For Surgery


This is Leona, another Singaporean baby born with full Trisomy 18.

She is now 2 plus.

From birth, she has shown the strongest of spirits, modeled after her very positive parents.

I believe these children can feel the life energy of those who want them to be here.

Leona has come out of a PEG surgery wonderfully, with easy intubation and extubation.

Now with a tummy feeding port, she can enjoy the freedom of having nothing through her nostril. I believe this would pave the way to greater improvement in feeding therapy, without any regurgitation.

I remember after Vera had this surgery, she became much more comfortable, and thus less cranky. Vomiting became a thing of the past.

It is as much a life improvement for the child as it is for the parents. Grow grow grow now, Leona!

Still Choking

It is 2 weeks since Vera fell sick.

She is getting better, but the year end cold weather is not helping to speed things up.

The choking continues, even in her sleep. Secretions, while still apparent, have subsided.

We hope for her to be well in the next two weeks.

01 December 2014

Year End Illness 2014

And I was counting the days to December, whereby Vera would have broken her record of not being sick for 1 whole year.

Too bad, she is down with an URTI (upper respiratory tract infection), also known as a flu. There is fever, but low grade, which is a sign to me that it's not a serious one. If serious, the fever will spike to above 39 deg C in the first day. If we are lucky, this bout will clear in 2 weeks.

Her record so far:-

1-3 years old: 3 times fall sick per year, with hospitalisation.

4-5 years old: 2 times fall sick per year, sometimes manage at home with suctioning

6 years old: 1 time fall sick, so far managing at home

Well, at least the trend is positive so far!

I just hope she recovers in time for Christmas.

24 November 2014

2014 Hearing Review

We brought Vera for her ENT appointment today.
The ENT doctor looked down her ear canals and remarked that lots of wax build up has occurred.
He believes that there is also fluid buildup in her inner ear. This can occur when the tube draining it is not functioning properly. Even if the fluid is surgically drained out, he suspects it will keep recurring. 
The two above reasons could affect the level of hearing in her good ear. We noticed that lately she has been digging her ears with her pointer finger, as if to clear some blockage.
The doc has ordered an ABR test in 2 weeks' time. Vera will have to be sedated with Chloral Hydrate for this test to be done. It will give us a definite answer as to what is happening in her good ear.
Our aim now is to preserve whatever hearing is in her good ear.

12 November 2014

EIPIC Graduation 2014


Today Vera graduated from the EIPIC programme at Rainbow Centre. 

She has come a long way since the early days, she started early intervention at 1 year old. 

Back then, she hated swimming. 


Now, she loves the water. 


In the past, she'd stare perplexed at what we were trying to do in music therapy


Now, she totally enjoys music and participates so much more.


Over the years, she started to enjoy going to school

There was no longer any crankiness. 


She was blessed with teachers who really want her to experience the world




We are happy to be part of the loving community that is Rainbow Centre. It's a truly special place with special teachers!


04 November 2014

Graduating Friends


Vera loves school and her friends. 

The only time she can freely touch them is when they are lying down.



With long-time friend Xing Ying
Xing Ying and her have been classmates since they were 1 year plus. How time has flown by.
They are now graduating from the EIPIC programme this year.
We will miss the EIPIC teachers, who are a really special breed - they are so dedicated in this work.
Next week, Vera will be having her graduation ceremony and we are performing an item as a class.
Stay tuned!

14 October 2014

Knee Gaiters for Standing



We finally get gaiters for Vera. 

They are essential now, given that her legs have become more bent at the knees.

With them strapped on, she can stand for longer. As she grows heavier, it will get harder for her to bear her own weight.

10 October 2014

Expensive Girl 2014

My idea of possessing luxury goods is equipment for Vera.

These special needs items are so pricey! Understandably, these companies don't have a big market of customers.

Just a list of what we've spent on so far in 2014.

1. Resmed AirFit Mask (had to be imported from US): S$364
2. Whisper Soft Mask (had to be imported from US): $90
3. Rifton Activity Chair (from DNR Wheels): $4850 ($3000 sponsored by my mom and a dear friend)
4. New AFOs: $400
5. New shoes for AFOs: $55
6. Knee gaitors (from DNR Wheels): $109
7. New Mickey button: $201

Now saving for just one more item this year - a pacer gait trainer.

Hope to be able to have Vera taking a few steps in it for her birthday celebration in February next year.


Shaking An Instrument


After many years of practice, Vera finally can do this. Her grip has improved a lot. She is purposefully listening to the sound it makes as she shakes it. The Rifton Activity Chair has helped a lot, as we are able to constantly keep her interacting with things on the tray.

I am so so proud of her.

05 October 2014

Casting A New AFOs


Vera has outgrown her 2nd pair of AFOs. We got her casted for a new pair at the Foot & Limb Design Clinic today.


We'll be getting her new AFOs in January next year, it's quite a wait!

Children's Day at the Aquarium


We joined Vera's school to the S.E.A. Aquarium to celebrate Children's Day. Although Daen had already been there before, I wanted him to have a memory of being there with Vera. 


When he saw the Moray Eels, he said "Chea chea". 

That's Vera's moniker. Daen is the Crab, I'm the Octopus and Daddy is the Whale.

One day, I hope he'll read this post and remember the magical times with his sister pretending to be a family of sea creatures.


02 October 2014

Vera Pulls Out Mickey Button

I should have seen it coming.

I had not changed Vera's balloon water in a few months.

I am supposed to check monthly to make sure it is at 6ml.

She pulls it out. I stare at the plump shiny balloon, resisting a sudden urge to squeeze it. Hold on, you're putting it back into her tummy.

I syringed out the water inside - only 3ml. No wonder she could yank it out.

I stuff it back into the tummy and pumped up the balloon to 6ml.

Like-a-(PEG)pro.

I better get a spare button in hand. Who knows when I will be faced with a burst balloon!

*fingers crossed*

29 September 2014

One Shoe Size Up


Slowly but surely, Vera is growing.


She's now a US9.

Ever since her Orthotist recommended New Balance to us, getting shoes to fit her AFOs is now a breeze.

Too tight? I simply buy the next size up, without having to bring Vera to the shop.


The insoles are easily removable, and the base is broad enough to fit the AFO.


Plus there is a discount with my Passion card. Next up, getting some knee gaitors to help straighten her knees when she practises standing.

25 September 2014

A Pacer Gait Trainer for Vera

Learning to walk isn't one of my expectations for Vera.

She doesn't stand very well for a start. Her hamstrings and heels are very tight, and she has rocker bottom feet.

But what if we are aiming too low for Vera and not pushing her to work harder, thinking that it is beyond her?

Therapy is hard work to keep up. At 16kg, Vera quite a weight to support, if she buckles at the knees in a pacer gait trainer.


Which is why we need one with a good harness support. One where she can sit in when she tires, and try again to take a few steps when she's up for it. Safer for Vera, easier for us.

Now that we've got her seating sorted for a long time to come with the Rifton Activity Chair which has worked beautifully for her posture, we are now looking into getting her a Pacer Gait Trainer, the Grillo.

At S$3250, it is not something we can backtrack on and return if Vera rejects it. It is a long-term commitment on our part too, to put in the extra effort to be her regular "trainer". At the end of a long day, it's much easier to give her hugs and kisses than strap her up with all her protests.

The road to self-mobility for Vera is long, or may never materialise, but we cannot say we did not try.

22 September 2014

The Light Was Just Right

The light was just right for a lovely shot with Daddy at Punggol Point.




15 August 2014

Sudden Face Rash

I came back from work at 10pm to find Vera with a rash over her face. She is scratching at her already swollen eyes.
The rash is mostly at the ear, cheek and eye of the right side of her face.
I call the Starpals After Office Helpline. A doc calls back within 10 minutes. I send him this picture, he reverts with some advice to give some meds I thankfully have at home.
She falls asleep shortly. Grateful for the help when she needed it.

09 August 2014

Happy National Day

Today Singapore turns 49.



05 July 2014

At The Pier

Punggol Pier is the laid back cousin of the new Punggol Waterfront. We like it this way. Away from the crowds on a weekend.






03 July 2014

Happiness is...

Seeing Daen connecting with Vera.


28 June 2014

Gripping and Holding Better

Hand control has improved
Vera never fails to surprise us. Spending some time with her since it's the June school holidays, I see that she has improved in her willingness to hold things. This is very heartening. Especially for the ball - she used to resist it because it was round and hard to hold.

We are very proud of her.

26 June 2014

Facebook Support

What would I do without Facebook support groups?
I am in one for Trisomy 18 and one for Juvenile idiopathic arthritis.
Both are based in the US. And I am lucky they are open to people outside of it seeking support.

17 June 2014

Whisper Soft Mask


The masks I ordered online have arrived.
The closest fit is an Extra Large nasal mask called Whisper Soft.

However it is far from "whisper soft". It has high leakage and Beth who sleeps with Vera is finding it hard to rest with the hissing sound all night. Even then, it is not going to fit for long and there is no next size up.

02 June 2014

Eczema


Vera is having a bad tummy rash. To prevent her from scratching, we put a tummy binder over it. That made it worse.
We've brought her to the National Skin Centre. A quick skin sample test confirmed that it wasn't fungal or scabies.


Hope this steroidal cream works and we can stop splinting her hands.

Daen Helps Out

Daen helping Vera put on her splint. He wants to feed her too. We said when he is a little older.

29 May 2014

The Mask Challenge



After a smooth 2 years with a perfectly-fitting Respironics Comfort Classic M mask for Vera, the time has come, yet again, to hunt for a new one.

If only there were a next size up, an L size. Alas, there isn’t. So I’m back in the big worldwide web of masks, hoping to unearth a gem for Vera.

Why not ask a doctor? I have. He points me to the sleep therapist at the hospital.
Do they have any masks that fit her? Yes, but it’s been discontinued and no longer in production.

So what should I do? Approach Respironics and Resmed (the two main suppliers in Singapore) direct. Done that too. Sales people have come to the house with their suite of masks, tried them on Vera and said, ‘Sorry, I’m afraid we’ve nothing for you’.

The closest fit offered by the Respironics sales guy is the Profile Lite Gel mask (which I already have), a bulky triangular cup that I know can’t be the best I can give to Vera.



And so the online shopping starts.

Vera needs a full face mask. But guess what, they don’t make them for kids. (Are there no kids who wear full face masks in this world?)

No choice, I hone in on the largest size of adult nasal masks.

I print out mask sizing guides, cut nose-holes out, and bring them home to match Vera.



Online orders require prescription. So I have to write in to her doctor to get one.

Place the order and pray that the mask is the magic one that turns out right for her.

Online orders come with their share of problems. We’ve received shipments of yellowing masks, definitely old stock, masks that are asymmetrical in fit, masks that are defective and leaking unusually from parts that don’t quite fit.


Online mask order - defect on the top, plastic piece out of place

Time is running out.

Already we have cut into her current mask but the hole can barely cover her lips.

Please, please let there be a mask out there for her and let me find it.

14 May 2014

Remembering Charmaine

Dear Charmaine's mummy,

Of course I remember you!

And I am glad to find that you have made a blog in memory of your beautiful Charmaine.

Please allow me to share it here, as there are also mummies with T18 angels reading this blog.

http://inlovingmemoryofcharmaine.blogspot.sg/

Though not here in being, I can imagine that a mother will hold her child in her heart and mind every day for the rest of her life.


10 May 2014

Mother's Day at Daen's School

Scrapbooking together - a great way to bond and make memories

He wanted to do it by himself

Proud of his work

That's my boy.

Happy moments from the day you were born

29 April 2014

Two Worlds

Sometimes, I feel a little schizophrenic.

In the sense that I feel I am in two worlds at once.

The world of Vera and Daen - is one filled with hospital visits, medications, constantly figuring out what's causing Vera's this and that, and anxiety over when Daen's JIA will rear its ugly head.

The other, is the world of Advertising which I love and have an immense passion for. Work is a magically world of make-believe. We make up words, pictures, storylines - all while having more than a few laughs. The irony is, I work to de-stress, to get away from my full-time job of mothering two kids with special needs.

In the midst of rushing between the two worlds, mostly when I'm driving, I sometimes wonder who I really am.

That's when I know it's time to get my fix: A good book and a flat white.

Who Will Look After Vera?


The other day, I casually asked Daen.

"When Mummy and Daddy grow old, who will look after Chea Chea?"

"Auntie!" he quipped, referring to our helper.

"When Auntie grows old, who will look after Chea Chea?" I continued.

"Daen!" he offered, without the slightly hesitation. 

"When Daen grows old, who will look after Chea Chea?" I ventured.

"Nobody!" 

The reality of his answer hit me somewhat, and tears welled up in my eyes. 

He looked at me, then with a soft voice said: "Don't worry. I'll still look after Chea Chea when I'm old."


26 April 2014

Vera's Rifton Activity Chair is Here!

The Queen has a new throne
Finally, Vera's proper chair arrived at our home.

The good helpful people from DNR Wheels brought it and fitted it for her.

A kind old friend and my mother chipped in for this chair, which came in at a hefty S$4800 (US$3800) including shipping.

Like Vera's Bugaboo Bee pram, it is scalable on many fronts, so it can grow with her - so we considered it a worthwhile investment if she can use it for the next 6 years. Thankfully, Vera doesn't grow fast height-wise.

Immediate benefits:
1) Less strain on our backs carrying her in and out
2) Side supports for her curved spine
3) She can 'sit' with us at the dining table
4) Look at us at eye level instead of looking up at us all the time
5) Proper footrest


Long-term benefits:
When Vera gets really heavy, we will be able to push her to the bathroom to do a transfer, and minimise carrying.

For now, she is well-supported and I am a happy mom. : )

Auntie L


Auntie L is Vera's first physiotherapist.

I believe we brought Vera to see her when she was a year old or so.

We received lots of good, practical advice from her. Each visit was an educational cum hands-on session.

We stopped seeing Auntie L a few years later when Vera seemed to fall sick every few months and hence made little progress physio-wise.

Vera is now 6 and we bumped into Auntie L at the hospital today.

One look at Vera and she could tell she was slouching in her pram because the seat had become too shallow. It no longer supported her under the knees.

I think having her point that out to me was an Eureka moment. Sometimes we get lost in the day-to-day matters to actually take stock and review current "settings". 

She offered some suggestions to extend the seat, since the backrest of the pram still had room for height growth. 

When I related the events to Ian, he recalled, "I think the Bugaboo Bee's seat can be extended. That's one of the reasons you bought it."

I had completely forgotten. I googled to find out if it were indeed true that the Bee's seat could be extended

Yes it can! With a simple seat lift and tug, no screws whatever. 


I adjusted it to the exactly depth required - 10 inches - and happily found it could still protrude some more. 


Sometimes the solution is right under your nose - you just need the right people to point it out to you!