24 June 2012

Secret Training Progress

Thanks to this handed-down toy from Ian's sister, Vera's improved on her proning quite significantly.

It's from Playskool and has music and moving balls. After 4 years, she's still in love with it. Her gaze follows the balls popping up and rolling down.

We've borrowed the stander for the school holidays and have put her in it a few times.

Vera's cultivated a love for TV. And unlike Daen, she gets to watch it all she wants, which is every night with Daddy till 11pm. Maybe that's why she's been making progress in her proning too!

22 June 2012

Starting on Domperidone

In a bid to help Vera move her bowels a little more easily, her GI doctor has agreed to try her on Domperidone (Motilium).

We notice a little less 'pushing power' from Vera as compared to last year, so this may help move things along. 

Hopefully, this regulates her bowels to a maximum of every 2 days.

She also had her Flu jab (Fluarix) today. So far so good, no fever.

20 June 2012

Angel Vera K

Vera K
22 March 2011 - 19 June 2012
Vera K, the other Vera in Singapore with Trisomy 18, grew her wings yesterday, passing peacefully in her mother's arms. She lived 15 months. Now, our Vera will have lost another of her friends who she has just met last Sept.

When we attended her funeral in a peaceful Danish church, I stared so long at her in her crib - she looked like she was merely asleep. I will never forget those big doe eyes which she got from her mother.

"And with a smile she carries all my cares away."
                                                           - Anonymous

Though her stay was brief, she touched the lives of those she was gifted to. Our Trisomy 18 children speak not a word, yet teach us volumes about miracles, strength, weakness, pain, joy, acceptance and unconditional love. 

15 June 2012

Trisomy18 SG

There isn't a Trisomy 18 support group in Singapore for me to join.

So I created one on facebook.

Seeing how wonderful a resource groups like SOFT are on Facebook inspired it.

Our group is small - only a handful of families. But hopefully over time, it will become a  place where families in Singapore can support and celebrate with one another the journeys of their Trisomy 18 child.

13 June 2012

And The Flu Spreads

I caught the flu bug 2 weeks ago. The minute I recovered, the two kids came down with it.

Here we go again.

When you have kids, you literally sign whatever past idyllic life you had away.

And exchange it for years of constant worry and weariness.

If it weren't for the fact that they bring immense joy, you'd think anyone would be crazy to have kids.

08 June 2012

Comfort Classic is Here!

Respironics Comfort Classic M size

Vera's new mask is finally here from the U.S. and it's a perfect fit!

The opening is just slightly higher than her old Resmed Mirage Micro mask, which is exactly what we were looking for. And the silicon is very soft, much softer than gel, so unlikely there will be the pressure marks caused by the Respironics Profile Lite.

Big thanks to the Respi team at NUH for recommending this.

I contacted the Respirionics sales rep in Singapore but he insisted there was no way he could bring it in for me as it was an old model. So we ordered this from CPAP.com. It's a great service, with an online sales rep chat, and parcel tracking service.

The mask costs USD40, and shipping was USD36. Total was USD76 (S$97).

Now better sleep for Vera may well be achievable again.

07 June 2012

Chiropractic Care

We've decided to seek chiropractic care for Vera to manage her scoliosis.

A 10-month plan has been set out for her, with adjustments twice a week.

As one of you has mentioned, Vera is still young so the possibility of improvement in the curvature is there.

The X-ray of the foot shows no break in the bones, which contradicts what the surgeon told us (that we broke it when we overstretched it).

For those of you who are new to what chiropractic does, all I can say is it's something you have to experience for yourself to believe its effects on your body.

It helped me through some periods of great strain to my spine and neck, especially the baby bearing and carrying years.

For chiropractors, surgery is the last resort, and something they find too invasive, so we're on the same page.