30 July 2011

Canetons Chair


The newly-throned Queen
We got lucky in our search for Vera's new chair.

Upon the recommendation of Rae who uses the same Canetons chair for her special needs gal, I found out where to buy it online. It was selling at S$159.

Then, I chanced upon a mummy selling a second-hand one online for S$40! And she lived just 10 minutes from us.

Now Vera has a higher-up view, a roomier seat and a wider tray. Her legs are at the correct 90 degrees now. And the backrest is reclinable when she wants to rest. Best of all, the chair is lightweight unlike the Rifton one.


It would be great to have her use this in school too.

27 July 2011

Back To School


Finally, Vera and her friend XY are reunited again. These two have been buddies since her mummy and I were both newly pregnant back in 2009.


Vera is also back on the Rifton K110 Mini Dynamic Stander.


She rolls up to the board for some "painting".

Thanks for checking in on Vera, and Cathy thanks for the reminder to keep up on my posts!

18 July 2011

Rifton Chair


We're trying out this Rifton Chair for Vera in school. Her current feeder chair, which she has been using since she was a baby, is getting too small for her already, especially at the crotch area.

Problem is the tray table can't fit her, as her stomach protrudes out too much. It will rub against her PEG button.

Hope to get a permanent chair solution for her soon.

Daen's First Hike





The morning before Vera fell sick, we brought Daen to Bukit Timah Nature Reserve. Mornings are usually spent with him, as Vera is still sleeping. The Papoose was given to us by a friend, and it is meant for hiking with baby. Perhaps we can relive our hiking days (Nepal, Kinabalu, etc) with Daen in the future. Or maybe I'll be too unfit by then!

Blood


It's all my fault.

I went to clean her teeth with too much Biotene liquid. She swallowed some of it, and probably aspirated. That very night, there were increased secretions, and now runny nose and a fever.

Don't know why there's fresh bleeding from the nose too. That's stopped, thankfully.

Sometimes, mom doesn't always know best.

08 July 2011

Detecting Trisomy 18

This article is way too high-brow for me. But in a nutshell, it seems that someone's found a way to detect Trisomy 13 and 18 in utero to a high 98 per cent certainty. 


With more cases being seen today ( I understand that a Singapore doctor saw 5 Trisomy 18 cases in the past 1 year), and given that the current practice, at least in the US, is moving towards with-holding life support from very sick babies, I hope these tests get made mandatory soon and offered to mothers from age 30, not age 35.

I was 32 when I had Vera. A Nuchal Translucency Test show "low risk" of Trisomy 18. When I asked about it, the reason was that it was a "false negative". Well, we've got to get better, more accurate tests then!

07 July 2011

Another Vera

About a month ago, the father of another Trisomy 18 baby contacted me.

I was surprised to hear they lived in Singapore.

Even more so to learn that their baby girl was also named Vera.

It is just mind-boggling to consider the odds of that. (When you live with Trisomy 18, you start to take probability predictions like "high risk/low risk, high chance/minimal chance" with a pinch of salt.)

The mother Laura learnt about Vera from this blog. We met up, together with baby Ruth's parents, and talked. I never would have thought it were possible to find other parents in Singapore when Vera was born.


Hopefully we will be a source of hope and support for one another.

06 July 2011

Sand-sory Time

Vera enjoyed playing with sand at school today. It ran through her fingers and she waded in the 'pool'. It was about the only time she wasn't acting up (due to lack of sleep). So far, the journey to and fro has been mostly with her complaining away.

I managed to take a coffee break during the session, leaving Vera to her teacher. There is a new hospital (Khoo Teck Puat) cafeteria near her school with a nice pond view.

02 July 2011

Stand in the Corner

This is how we've been standing with Vera on a daily basis. It is not the correct position - as you can see, her butt juts out and she is hanging onto our hands like they were crutches.

This is a better position for Vera. Her teacher Jo gave me the idea to put her up against the wall to stand. This way she can learn to bear weight on her legs correctly.

I feel we need a stander for Vera, and will be seeking some advice from her physiotherapist.

I'm also trying out sitting her against the wall. It helps her tuck her chin in and keep her head down.
Here are some photos of the goofy gal. Enjoy!





01 July 2011

The Unsung Heroes

Seen at Vera's school today.