Vera is 7

Vera has turned Seven. We had a small family gathering after all the big celebrations during the Chinese New Year.

This year, Daen gets into the swing of the preparation with vigour. 

Early start for Daen to go and get flowers for Vera. 

He decided on the gifts that he was going to get her - "one orchid and one tulip" and the card that he was going to make. (He ends up drawing three.)

He takes his role as host very seriously - getting guests to make wishing cards, starting the keyboard accompaniment for the birthday song, and finally helping Vera to cut the cake. 

When I told him it was the role of the birthday child to give out the cake to the guests (not to cut the cake which he adamantly wanted to) he said, "But Chea Chea can't walk" so he promptly went about giving out the cake. 

Everytime I see Daen caring for Vera, at this young age, I know I'm looking at something so pure and beautiful that nothing in this world can replace. 

Getting into art and craft mode for the deco

Cousins to help blow the candles

Old mama (my grandma) makes her smile

With Gong Gong

Lunar New Year 2015

Vera recovered in time for this year's celebration and she turns 7 during this Lunar New Year period so look out for the next post!

Vera wishing all Best of Health & a Happy for Lunar New Year!

Home Cheer

Finally got down to open Christmas presents. This one from Home Cheer was very meaningful – a set of scrapbooking stuff to make a book of beautiful memories with Vera. It was a good reminder to me that while we busy with the everyday, we need to take time to document our moments. Now to find time to sit down and piece it together!

Windy Day at the Beach

Vera has recovered and we could finally bring her outdoors. We bought a whole chicken, whipped some potato and boiled some broccoli and headed to Pasir Ris beach. 

This was the spot Ian proposed to me 10 years' ago. Today, we return with 2 kids in tow. 

December to January is continuously windy at this beach. You have to hold down your cups and plates. It was a refreshing change from our hospital "rounds" the week before. 

Vera is well, and life is good again.

Getting Better

15 days after the chest infection started, it seems she is on the mend. No more crying although the eye bags are still evident.

We hope to be home tomorrow.

In Deep Slumber

Maybe it's the hospital air. Or the hospital bed. Or the thick blanket or aircon.

The extremely exhausted girl finally gets the sleep she needs to recover. She's slept for a straight 15 hours already.

Hopefully sleep will work it's magic.

I am again reminded how easily she can catch a bug. We just went to school for one day and she was next to another child who was coughing away.

Parents, please keep sick children out of school - spread to classmates, spread to teacher.

Also teachers good practice to sanitise hands after touching kids who are unwell. Or place them away from other kids.

Sigh. December Infection. January Infection. February...

Still Not Well

Vera fell sick on 9 Jan. That was 10 days ago. She is still not well. In fact, she so clogged up secretions the past few days that she could hardly get any sleep. She has been crying once we put on the mask, because the air pushes the secretions back in doesn't help.

Seeing her crying stresses me out. Because the happy girl hardly cries.

She usually takes 2-3 weeks to get well from a bout of flu. We still don't know which way this one is gonna go. Part of the reason is because I made the call to hold off antibiotics. She gets very bad diarrhoea from oral antibiotics and that's something I don't wanna deal with. It basically clears her gut out.

If her fever comes back with a vengeance, we may consider going to hospital for IV antibiotics. That doesn't give her diarrhoea cos it goes straight into the bloodstream.

New Year, Nasty Bug

Barely a week into the new year and Vera is down with a bad chest infection.

She went to school for a day, and was down the next day.

The chest infection in December was mild, and she got through it in 2 weeks.

This one however came fast and furious, with thick green gunk flowing freely on the first day, accompanied by a high fever.

Nurse from Starpals came, and we managed to get some Klacid for her. She can't be on Augmentin as that leads to very bad diarrhoea.

Alas, Klacid is also giving her very bad diarrhoea.

It is so bad that I doubt her gut can make it through another 6 days to finish the course.

I am stopping the Klacid. We will keep suctioning till it passes.

Fingers crossed she can fight this on her own. Else it will be admission to the hospital, set a plug for IV antibiotics, which won't cause diarrhoea.

Rise and Shine to 2015

Start of the new year.

If there was one great achievement, it would be in Vera's sleeping routine.

After years of having her sleeping at 2am and waking at 10am, we finally managed to shift it to saner hours.

She now sleeps about 1130 and wakes around 830.

In time to send Daen to school.

I can let her sunbathe in the park before going to work.

Let's hope morning Vera is here to stay!

Early Xmas Present

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

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.

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.

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.

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's 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!

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