18 June 2010

Shoo Fly!




When Vera is excited, she swots flies.

Get in the way and you may experience a few slaps!

Trisomy 18 kids are often described by family members as really happy children. It's true for Vera. As long as she's not medically uncomfortable, she's cheerful. No attitudes, no tantrums. Just megawatt smiles for those who love her.

14 June 2010

The Difference

Raising his head already

Just 3 months and Daen can already do what took Vera 2 and a half years to master.

Having him has given us a whole new experience.

We realise how much strength a normal baby is born with.

Equally amazing is how easily a baby can fall asleep. A short stroll is all it takes. After dealing with Vera's sleep difficulties for so long, it almost seems like magic.

After a feed, we are able to put him down immediately after burping, and get on with other things. We always had to hold Vera upright for up to an hour when she was small, due to her reflux. And then there was always vomit to clear, meds to give, tubes to insert.

I'm not comparing them, but rather comparing the difference in our experience of caring for a special needs baby vs a regular one.

Daen's record book

Vera's record book

I totally understand why people with normal babies want to have more of them. And those with a special child choose to stop there.

12 June 2010

To Bed To Bed

I'm determined to get Vera out of her late night sleep cycle.

For the past few months, she's been sleeping around 12 midnight. She still struggles with breathing even with Bi-pap (perhaps it's beginning to lose its effect), and doesn't sleep well from 2-5am. The result: She wakes up really late (930am) and takes her afternoon nap at close to 5pm. We're always having to force her to wake up from deep sleep in the day because she's so tired out from not sleeping well at night.

In the past, knowing that she sleeps late, we'll entertain and play with her in the living room till 10 plus.

Now, we're gonna enforce putting her in bed by 9pm. And leaving her to wind down and settle. Hopefully, once she gets used to nobody playing with her, she'll think 'oh well, I might as well sleep'.

Last night was the first night we tried it out.

We peeked and saw Vera still doing her secret training in bed while catching up with Tinny. This girl.

Hopefully it works, and we're able to shift her sleep/wake times earlier.

It's good for her and good for us.

05 June 2010

Vera Laughs Again

The last time Vera laughed was 1 year ago. That precious moment was caught on video, the first time since birth that she had ever laughed. I'd not expected her to do it again.

But guess what - she surprised us all. I was telling my mom about the different kinds of nursers - the different breastfeeding styles of babies, and Vera started to laugh!

I couldn't help but laugh with her. I've waited one year for this moment.

03 June 2010

Retail Therapy

I went on a shopping spree today.

Checklist:
1) Omeprazole
2) Pediasure
3) Bard button
4) Feeding Tube

While women my age are out in full force grabbing the best buys on shoes, clothes, jewellery and the such at the Great Singapore Sale, I get my retail therapy from buying medical supplies.

Over the last 2 years, I've become quite a 'pharmanista'. I know where the best deal is - for non-sterile gauze and oral swabs. Where 50ml and 10ml syringes are cheaper - not necessarily at the same shop. How to get a discount with a er...borrowed privileged card (worked for a while, till they became more viligant). I'd walk down the aisle and names of medical items roll off my tongue - Duoderm, Tegaderm, Durapore, Micropore, Hyperfix etc. Just like how you would go "Gucci, Prada, Dolce & Gabbana" as you walk down a mall.

The amounts I fork out are not small. The Omeprazole at $82 felt like buying a nice pair of Levi's jeans. The ever-elusive BARD button at $227, felt like a pair of sturdy, long-wearing Camper shoes.

When you're a mother, shopping for your kids becomes just as satisfying as shopping for yourself. Perhaps more so.