27 July 2009

Heads Are Made For Shaking

We were worried about Vera's torticollis in her first year, that her neck muscles on one side would be so stiff her head would slant to one side.

Well, here is the little girl, surprising us with her latest discovery that heads are good for shaking. She's doing her own stretching exercise now!

Like the song says,

'Guess things just turn out after all,
it's just another ordinary miracle today.'

25 July 2009

Be Strong Brianna

Our friend with a lovely little girl named Brianna has been experiencing the much-feared 'blue spells' that all doctors tell parents about when they first break new of the Trisomy 18 diagnosis.

At the time of Vera's birth this was what we were told:
In time to come, babies with T18 would have frequent apnea spells. This happens because the brain sends faulty messages to different bodily functions. Hence, she may "forget to breathe" and have more and more frequent "blue spells". "When you open up her blanket and don't see the rise and fall of her heart after 20 seconds, it's not a good sign," they added.

No parent should have to watch their baby turn blue. Please send your thoughts and prayers to this beautiful little girl who has been giving such hope to all of us with Trisomy 18 babies.

24 July 2009

Ms Triathlete

"Here comes participant Vera fresh out of the swim leg in record time,
let's give her a big ROUND OF APPLAUSE!

Vera tried 'walking' on the floor of the pool in school for the first time today, with the help of her teacher. Mummy got the chance to fantasize about her future.

23 July 2009

Phlegm 911

Phlegm builds up in Vera every day and she is uncomfortable until she vomits it out. This now happens at least twice a day, once in the morning and once before she sleeps. We are so thankful she has learnt to cough it out.

Phlegm calls for an emergency response. When you've had enough of changing clothes, bedsheets and pillowcases laced with thick, gooey puke, you learn to 'catch the moment' before it happens. We now have these white plastic bowls placed all around the house. At the first sounds of retching, I bolt like a deer to her side and place the bowl by her mouth. Speed is of the essence. So far, there have been so many 'saves' that I probably could make quite a good goalkeeper.

22 July 2009

Happy 17th Month

Dear Vera,

You turn 17 months today. This past month, you've become skinnier and lighter. You've lost some weight because you had the runs for nearly 10 days. Probably because mommy tried to change you to another formula milk too quickly and your system could not adjust to it. In getting you onto a milk that would help you gain, it made you lose weight instead. We'll have to treat your body more gently from now.

This month you became more 'knowing'. You seem to know - yes it's not just being aware. You seem to know mummy is trying to make you laugh, and you smile with anticipation. You seem to know when mummy scolds you (yes, I do) for fussing non-stop at night, and you stop (for a while). You seem to know when it's physio time, and you try to play along (for a while). You know certain songs when you hear them, because you'd break into a smile. How much do you know? I think you know our love - and that is all the language we need.

Happy One-More-Month, Vera. What a fun-filled, poop-filled month it was.

20 July 2009

You Light Up My Life

Daddy loves to show Vera the lights at IKEA.
Mommy thought they'd make for some nice shots.

15 July 2009

Tummy Time

Okay. Let's get some turning radius, here we go......
Ooh. (puff puff), now gotta pull that hand out...a back turn for leverage,
and now for the final push...up, Up, UP...YES...oh, oh... eeeyeoww...bom.

This is how Vera has improved from the first time she rolled onto her tummy 7 months ago. It is so satisfying to see her wanting to move, wanting to push the limits of her limbs. They are growing stronger, slowly but surely.

13 July 2009

The Power of Touch

When Vera was born, her fists were tightly clenched, her second fingers overlapping the third. These are characteristic of Trisomy 18 babies.

We refused to believe her hands would remain closed for good.

After 16 months of therapy - lots of hand-holding, massaging, clapping, stroking - Vera is able to keep her palm open and clap with us for a little while. We look forward to the day she can clap on her own.

08 July 2009

All Lives Intersect

One of my favourite authors is Mitch Albom of Tuesdays with Morrie fame. I had a rare chance to re-read his latest book The Five People You Meet In Heaven while Vera was asleep, and came across this poignantly perceptive passage:

"Did you ever wonder? Why people gather when others die? Why people feel they should?
It's because the human spirit knows, deep down, that all lives intersect. That death doesn't just take someone, it misses someone else, and in the small distance between being taken and being missed, lives are changed."

07 July 2009

The Value of Existence

The value of existence varies.

When existence is threatened, our perception of its value changes.

An animal that's endangered or close to extinction attracts far more attention than one that is not. Similarly, a person who is dying receives a lot more time from dear ones compared to when hale and hearty.

Same goes with Vera. Before she was born, we had intended to put her with a nanny while both of us continued to work. Now, given her expected shortened life span, time with her seems to take on far greater value. Also, by being the rare 10% to survive beyond infancy, she is giving us time. How can we not do the same? I often remind myself that while others have a lifetime in the 'country' of their children, Vera is but visiting us on a holiday. She deserves to have the time of her life.

06 July 2009

I Can Sit Up

Hey, hey, hey...now this is a different view.

Finally, Vera is able to sit up on her own. Not for long, maybe 15 seconds but it's already wonderful enough a sight for mommy and daddy to behold. Here she is doing 'tripod sitting' - supporting her weight with her hands in front. Looks stable, right? Until the little girl arches backwards or tips to the sides. Although the new view is interesting, she knows lying down is still far more relaxing.

02 July 2009

Getting a Helper

It's been 3 months since I've been home looking after Vera full time. Even with some part-time help from my mom, aunt and grandma, and Ian's complete support, it's been rather overwhelming for me. It's quite a strain on them as well.

As a copywriter, what I'd been doing on a daily basis for 10 years was sit at Starbucks and think of ideas, sketch stick figures then move the mouse. I enjoy looking after Vera, doing her therapy, taking her to school, helping her improve. But I'm not used to the monotony of routine chores. Perhaps my brain has been wired by now to seek change and new ideas on a daily basis.

So now, we're looking for a helper. Perhaps I'll be able to do some part-time work from home to help finance it. Hopefully, that will be a better balance.

01 July 2009

One of a Kind

Serene, Jonathan's mom, made this T-shirt specially for Vera. Thank you so much for this unique gift. It really brightened up my day, and Vera's wardrobe as well!