A Little Arm Tapping

Day 21 today. When I came she was awake. I sang her a familiar song, and towards the end, she started tapping her good arm in response, then drifted back to sleep. We learn to look out for these brief precious signs from our little non-verbal girl.

Day 12 At The Hospital

We're on Day 12 at the hospital.

Medically fragile kids like Vera can't cough and spit out their secretions as well as us and have to be suctioned almost every 3 hourly to have it removed. The session can take a lot out of them, making them breathless. They then need higher oxygen and ventilator support to help them recover from each session.

She seems to be improving. But as typical of such kids, progress is always slow and we just have to follow her pace.

That Empty Feeling

One of the things that sticks out like a sore thumb when Vera is in hospital is her home bed.

It just feels weird not to see her in it, happily keeping herself occupied with a musical toy, as we walk past.

The room has been given a clean sweep, de-germed, all ready for her return.

Praying that her recovery goes smoothly and she doesn't catch another bug before she heals from this one.

Back At Base Camp

While 'Love Is Not Rare' was about to air for the first time yesterday, we were scurrying to pack Vera's hospital bag.

I would have sat with Vera next to the radio to savour the moment of hearing it play, but I guess life happened in opposites yet again.

I called a cab and caught the song on air just as it arrived.

We're back at our second home and 'base camp' - the Ronald McDonald Family Room.

Vera is in the good care of a medical team we trust, and getting the support she needs to get better. It's always a relief to have capable hands take over the medical care.

It was a nice surprise, to browse through the 2016 Ronald McDonald House Charities Annual Report to see an article I'd contributed back then - from Vera's blog (The House That Supports Us). Vera was much smaller just 2 years back.

The common cold that we get once or twice a year sends medically fragile kids like Vera straight to hospital for medical support. We bounce back from a viral infection in 5-7 days. These kids take 2-4 weeks.

Thank you all for your well-wishes for Vera's recovery. It will just well, not be as speedy.

Vera Catches The Bug

I've been down with a throat infection and a bad cough the past week (through the launch of the song). I passed it to Ian whose been down these 2 days. Today, it's no surprise Vera has joined us.

There will be no going to LOVE 97.2FM to sing live to her now. They will air a pre-recorded interview instead at 3pm Wednesday 5 September. They will also play LOVE IS NOT RARE for the first time on air. Wish we could have been there but it was not to be. With medically fragile children like Vera, surprises like this and sudden change of plans are only to be expected. 

We're on 3 hourly suctioning + nebulizer n percussion now. Praying she rides through this bout at home. 

Love Is Not Rare Song Out Now

Photo by Isabelle Lim

Dear family, friends and Vera’s fans from near and far, 

Thank you for your overwhelming support for the launch of the ‘Love Is Not Rare’ song.

When people full of heart come together, miracles like this can happen. The song was arranged and produced by Patrick Chng, and the stories of the families sensitively brought to screen by director Shane Mok of BackButtonMedia and his team. Isabelle Lim lent her wonderful eye for seeing the best moments through her lens. Of course, not forgetting the man for stands for 'Love Is Not Rare', Kenneth Mah, founder of Rare Disorders Society Singapore.

To support children with rare disorders, please visit rdss.org.sg

If you would like to support the song, please download it at yinmay.com or at yinmay.bandcamp.com 

80% of the net proceeds will be donated to the Rare Disorders Society (Singapore).

Thanks for sharing the love : )