31 December 2009

Happy New Year To You!

"To all who love and think of me, may your new year be filled with simply joys and smiles like mine, however tough things might be. Thank you for what you've done to get me this far - special thanks to my milk mommies, auntie laura, auntie beth, teacher alfi and the wonderful people in my big family!"

29 December 2009

Orthopaedic Update

We brought Vera to a new doctor for her 6 monthly orthopaedic check up today.

At the last visit, the xray showed a curvature of about 20 degrees in her spine. We wanted to know if it had gotten any worse, but the new doctor said to come back in another 6 months. He did not recommend that we do an x-ray today, and expose her to unneccessary radiation.

He mentioned that the first 4 years were the most crucial - that is, any deterioration would likely happen in this period - after that the spine will more or less stabilise, until the next growth stage in puberty.

He told us that for now, her scoliosis should be the least of our worries. That we should instead let her have lots of swimming, and focus on developing her mental capacity through lots of stimulation and play.

24 December 2009

The Special Children

To all the special children I've had the honor to know,

Annabel, Brianna up in heaven, Mallorie, Akaiya, Alyssa, Zane, Lily, Annabel Leigh, Charmaine, Mathias, Seb, Rachel, Romulus, Sing Ying, Wenqi, Jonathan, Danielle, Isabelle -

You are in my heart this Christmas.

22 December 2009

How Far We've Come

2009 is coming to an end and I'm feeling rather retrospective.

Around this time 10 years ago, in 1999, Ian and I became an item. We traveled far and wide - trekking in the Himalayas, diving in the Great Barrier Reef, driving through the mountains of New Zealand, diving some more (cos I couldn't get enough of shipwrecks and manta rays)...before finally settling down 5 years ago.

We got our own little pad. Our own little car. Worked hard on weekdays and played hard on weekends -rockclimbing, swimming, hiking.

And when it seemed like going places had somewhat lost its thrill, we decided to have a baby.

That one decision was to turn our easy, almost too easy, existence into disarray.

We were chosen to be parents of a child with special needs. A child who wasn't expected to live past her first birthday.

We were thrown into the deep end - thrust into a world filled with medical terms, equipment and procedures - Patent Ductus Arteriosus, duplex kidney (what the...), glaucoma, apnea, scoliosis, tube insertion, CPAP, oxygen concentrators...just to name a few.

Our marriage was put to the test. While I dealt with the blues, Ian put up with a wife gone bonkers.

This time last year, I was like a wound-up toy, working my butt off in the office, stressed out and struggling to cope with what needed to be done back home. Ian single-handedly took care of Vera, with ad hoc help from our families. Feeding Vera through a nasal tube was a constant struggle.

So much has changed one year on.

Today, Vera is nearly 2 years old. She flashes her pearlies in response to people and play, and charms the pants off those who love her. Feeding is much easier now with the button in her tummy. We've got help with the housework, cooking and Vera's care. I've stopped work, and am 6 months pregnant with a baby boy. More often these days, Ian and I go out by ourselves, just like old times. We celebrated 10 years together last month (picture above).

Who would have thought we'd go through so much and come through?

One thing I've learnt: Tough times puncture your life for a reason - to make you realise just how much there is to be thankful for.

18 December 2009

Luvable Friends

A good friend brought her daughter to visit. It was so nice to see an older child so enchanted with Vera. I think Vera liked her too.

15 December 2009

My New Seat

video

Vera had been sitting in a rear-facing infant car seat since birth.

But now she's grown to a length whereby her legs no longer have space to stretch out.

It was time to get her a new front-facing car seat.

For the first time, she could watch the world roll by before her eyes. No more staring at the boring back seat.

I think she likes the new view.

Walk in the Park 9

Despite her stuffy breathing, life goes on. We go to the park on weekends, because that's the one thing Daddy likes to do: Bring Vera to the park.

Here we're at East Coast Beach. The last time we came, there were 3 of us. Now there are four.

13 December 2009

Ear/Nose/Throat Answers

Congestion, congestion. That's what we've been dealing with since the start of the cold season. Vera's been having relatively clear breathing in the day and able to sleep through most nights - until December started.

Now, her breathing is noisy when awake, and she's breathing mostly through her mouth. Nights have been fitful for her, complete with more choking and stuffiness. She's not sick, so is it the air? An allergy? What?

After nights of carrying, putting down, rocking, putting down...we really needed some answers.

I brought her to a pediatrician in the neighbourhood, hoping for some topical meds to give her some relief. No luck. The pediatrician insisted the problem was her Obstructive Sleep Apnea, and the solution was CPAP.

We know she needs CPAP. We know she needs to be on the oxy prongs. We also know we're too soft-hearted and have not been able to force them on her.

But could there be any other explanation for the congestion?

We brought her to see an Otolaryngologist (ENT specialist), who performed a Laryngoscopy on her. The probe looked like Vera's nasal feeding tube, but thicker, and with a camera and light at the tip. The little girl didn't like it going down through her nose and in until her voice box. I could see into Vera's airway on the screen, constricting with her cries of discomfort.

The scope threw up some new findings: It's not an allergy. It's not sinusitis. The ENT doctor believes it's something called Laryngomalacia. Although she has had a fundoplication, which is supposed to control her reflux, some acid was still coming up into the voice box and causing the flaps to swell. This narrows the passage and mucus/phlegm becomes harder for her to clear.

We got some meds (finally! It just feels better to be able to do something about a problem): Omeprazole for the reflux, and Sinupret - to thin the mucus, so it can hopefully flow easier. My eyes popped at the cost: $200 for 1 month's supply. Vera, you sure are a high-maintenance girl!

Right or wrong, at least we're getting some answers at last.

Once this Nose/Throat issue is more or less resolved, then we'll follow up on her hearing with an Auditory Brain Stem Response. We know she can hear, but it would be good to know how well, or how much she hears. She will have to be sedated for this test, so we're in no hurry to get this done.

03 December 2009

Gaining Weight

Vera has her own growth charts for Trisomy 18. As you can see, the black lines deviate markedly from normal growth curves, especially as the years go by.

For almost a year, Vera was the same weight. But since we put her on Pediasure recently, she's been putting on the pounds. At 22 months, she's now 17 pounds (8kg), and 27 inches (70cm) tall. This puts her in around the 80th percentile for weight, and 50th percentile for height on the Trisomy 18 charts. This means we can stop worrying about weight gain for now, and start to take her off Pediasure, which is high caloric and VERY sweet. Too sweet for even myself to take. So much sugar can't be good for little ones in the long run. She might go the other extreme and become fatty!

01 December 2009

'Tis The Season

Vera gets to see a Christmas tree in her home for the first time. Daddy's friend gave us the twinkling lights, and we borrowed the tree. We're trying her out on the walker too, and for the first time, she sat for about 2 minutes, moving a few inches backwards, before struggling. It would be so good if she could take to the walker for longer, so she can explore her surroundings better. Well, that'll have to be in her own good time.