Knee Gaiters for Standing

We finally get gaiters for Vera. They are essential now, given that her legs have become more bent at the knees.

With them strapped on, she can stand for longer. As she grows heavier, it will get harder for her to bear her own weight.

Expensive Girl 2014

My idea of possessing luxury goods is equipment for Vera.

These special needs items are so pricey! Understandably, these companies don't have a big market of customers.

Just a list of what we've spent on so far in 2014.

1. Resmed AirFit Mask (had to be imported from US): S$364
2. Whisper Soft Mask (had to be imported from US): $90
3. Rifton Activity Chair (from DNR Wheels): $4850 ($3000 sponsored by my mom and a dear friend)
4. New AFOs: $400
5. New shoes for AFOs: $55
6. Knee gaitors (from DNR Wheels): $109
7. New Mickey button: $201

Shaking An Instrument

After many years of practice, Vera can finally shake an instrument. Her grip has improved a lot. She is purposefully listening to the sound it makes as she shakes it. The Rifton Activity Chair has helped a lot, as we are able to constantly keep her interacting with things on the tray.

I am so so proud of her.

Casting A New AFOs

Vera has outgrown her 2nd pair of AFOs. We got her casted for a new pair at the Foot & Limb Design Clinic today.

We'll be getting her new AFOs in January next year, it's quite a wait!

Children's Day at the Aquarium

We joined Vera's school to the S.E.A. Aquarium to celebrate Children's Day. Although Daen had already been there before, I wanted him to have a memory of being there with Vera. 

When he saw the Moray Eels, he said "Chea chea". 

That's Vera's moniker. Daen is the Crab, I'm the Octopus and Daddy is the Whale.

One day, I hope he'll read this post and remember the magical times with his sister pretending to be a family of sea creatures.

Vera Pulls Out Mickey Button

I should have seen it coming.

I had not changed Vera's balloon water in a few months.

I am supposed to check monthly to make sure it is at 6ml.

She pulls it out. I stare at the plump shiny balloon, resisting a sudden urge to squeeze it. Hold on, you're putting it back into her tummy.

I syringed out the water inside - only 3ml. No wonder she could yank it out.

I stuff it back into the tummy and pumped up the balloon to 6ml.

Like-a-(PEG)pro.

I better get a spare button in hand. Who knows when I will be faced with a burst balloon!

*fingers crossed*