26 April 2015

Sleep Study Results

I have lost count how many sleep studies Vera has gone through.
I don't stay overnight with her. So far, it's been her caregiver.
I can't bear to see her with all the probes and wires. I lose my cool with the person attaching them.
A sleep study is a misnomer - how to sleep at all with all that stuff sticking to your entire body?
We do it because we need to know what the optimum pressure setting is to support Vera's breathing when she sleeps.
Her settings have gone up slightly, from 15/7 to 17/7.
Her Respi doc says since she has grown a fair bit, this is expected to support her added weight.

25 April 2015

School is Cool

Not a moment of boredom in school.

Now that Vera is in the Primary One of special needs education, the curriculum is packed with activity.

I made the choice to work part-time just so that I can bring Vera to school. 

Of course there is a financial sacrifice, but these precious moments, to be there to capture them, are priceless.

24 April 2015

Poking Her Nose

Vera has started to poke her nostrils with a vengeance.

It's so persistent that sores are appearing.

We don't know what to do except splint her.

We can't be hugging or playing with her all the time to prevent it.

15 April 2015

Vera's Checklist

Checklist of a regular 7-year-old child:

Things to do in 2015
1. Chinese Enrichment
2. Swimming lesson
3. Art class
4. Piano lessons

Checklist of a 7-year-old child with multiple disabilities:

Things to do in 2015
1. Eyes - Detailed eye exam under General Anaesthesia (June)
2. Ears - Detailed ear exam (ABR), get fitted for Hearing Aid, drainage of middle ear fluid under General Anaesthesia (June)
3. Mouth - Begin Oral Tasting seriously and not in an adhoc manner (in progress)
4. Lungs - Get annual overnight Sleep Study done and adjust settings for optimal breathing support (done)
5. Feet - Get new pair of AFOs made (done)
6. Equipment - Get one size up Bath Chair (and figure out how to custom build a base that can fit into your shower area). (in progress)

These are the things Ian and I busy ourselves about.

So what about Daen?

Chinese Enrichment, Swimming lesson, Art class, Piano lessons are all the things I would like to give him, but as of now he is getting none of them. I can't keep it up, even if he can.

07 April 2015

A Rare Gem

At Rare Disease Day 2015 - The disorder may be rare, but the love isn't.
We attended Rare Disease Day for the first time this year, an event organised by Rare Disorders Society Singapore

Through the Society, the struggles of families with children living with rare disorders have been receiving more attention and acknowledgement. 

Despite their extreme physical and mental disabilities - our special children play an important role - in reminding us that our purpose here on Earth is not to strive for more money or more fame, but to care for the frail and fragile amongst us.