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!

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.

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

Shaking An Instrument

After many years of practice, Vera can finally shake an instrument. 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.

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.

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*

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.

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.

The Light Was Just Right

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

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.

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.

Happiness is...

Seeing Daen connecting with Vera.

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.

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.

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.

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.

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.

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

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 magical 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."

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!

Myoclonic Jerks Return

In September 2012, Vera had fits presenting in the form of Myoclonic jerks for the first time. They went away after she was started on Epilim.

Less than 2 years later, they are back again.

Again she stares at nothing with a stunned look. This time, the pattern is non-stop clapping interspersed with the jerks. She goes into 'The Mode' once she is left alone.

We should have increased her Epilim dosage as she grew but we didn't. Lesson learnt.

Now let's hope that we can move up quickly to a dosage that will put this under control and I can have Vera back to her normal self.

Gift from a Reader

We received a gift for Vera from a reader of our blog.

Thank you Shermaine for the thoughtful gift - it is perfect for keeping her occupied while in her chair, and it fits nicely on the tray.

We have been lazy to work on her gross motor skills, so this is a good reminder. Will post again when Vera masters the toy - I hope one day she will!

She Needs A Proper Chair

Vera needs proper seating with lateral supports to correct her S-curve Scoliosis. 

Currently, she is still sitting in this Canetons chair. She slants, slouches and slides in it. Not good.

This Rifton Activity Chair R850 was hiding in the corner of the classroom unused for weeks until mummy took the initiative to try Vera out on it. I'm happy to see her sitting snug and much more in midline. She also did not fuss as much while doing art and craft in it. 

Thumbs up for the Rifton Activity Chair...now to work out how to order one for her for home.

Your belated Birthday present coming soon Vera!

Vera is 6

We had a small gathering with close family, in contrast to the big do last year.
How do we know Vera was excited? Well, she slept at 4am that night!

Daen's Birthday wish for Vera: "I wish Chea Chea can learn to eat food." Unprompted.

A Good 2013

I did a quick check and found that there were fewer posts in 2013 compared to 2012.

It's a good thing. It just means that things are going well with Vera, so I have less drama to blog about. 

In 2013, she had 2 hospital stays - one in June and another in December - both for gastro-enterological infection, with prolonged bouts of Diarrhea.

So far we are averaging 2 hospital stays a year, so I'd say she's doing alright. 

Here are some updates that we are very thankful for: 

1) Fits: Vera's myoclonic jerks (fits) have not resurfaced since September 2012, when she was put on fit medication Epilim. The course of treatment is 2 years, so by September 2014 if she stays fit-free, we can be on our way to weaning off the medication. 

2) Breathing: Vera's biPAP breathing requirement setting has remained largely the same. Results from the sleep study done end of 2012 are out and her requirement is 15/5. This is lower than the 15/7 she is currently on. This is the first time the settings have gone down instead of an expected increase. This is a reassurance that she is well supported for her breathing during sleep, or that she is growing stronger and doing more of the breathing work herself.

3) Gripping: Vera has starting to grip simple objects with her right hand. She has gradually become more open to holding things, even if it is for a few seconds. 

4) Kicking: She has discovered the joy of kicking, and loves it best when in the pool. Feeling her move so freely and joyfully in the water makes me wish I could bring her swimming every day. 

5) Visiting: We brought her out to more CNY house parties this year. When she was young, she hardly visited, for fear of infection. We're happy that she's stayed healthy throughout the festive period. 

So 2014, please be good to us. To Vera's fans who have been following us over the years, you have a good 2014 too!

Happy Lunar New Year 2014

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

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

She Prefers Mummy

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

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

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

Kick & Clap

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

Green Getaway

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

She Watches Him

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

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

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

Me and My Daddy

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