Caelen's Quest: March 2017

22 March 2017

Writing A Barrier?

One of the few cheap gadgets I've invested to make learning easier for C. Boogie Board Jot 4.5 Clearview is a translucent LCD board that comes with a detachable backing and alphabet flashcards. Use it to doodle or slot flashcards in between. Download apple app, place it on top of mobile phone and you can do interactive math quiz too!

This came in handy when C was asked write his Chinese name. We practised the strokes on the board before writing it on paper. The stylus glides on easily with little effort, ideal for C weak hands. Saves paper and erases in a click of a button. The only down side is words come out fluorescent yellow and not so visible under bright light / lighter background. Put it against darker background solves the problem.

This is how C learns! When there is a will, there is a way.

20 March 2017

Joyous March

We celebrated C's birthday almost 3 weeks ago. It was his very first birthday celebration in school with his very own group of friends.

From the birthday song dedication during morning assembly (see vid) to cake cutting and goodie bags distribution, C was all grins. Indeed special and memorable for us all. Can you believe this baby of mine is the oldest in his class?

Having a great time with his classmates!

Just today, I left him during snack break to wash his pump. Overheard this kentang boy requesting (in mandarin) for milk from auntie and thanking her for serving it. When I returned, he told me the milk was yummy.

Me: you drank the milk?
C: yes
Me: how? who fed you?
C: i drank it myself
Me: (checking the cup & table for spills) u sure u drank it?
C: yes i can hold the cup on my own. You see... (demonstrating)
Me: (impressed) wow the cup is heavy and you managed it well

New school term, new milestone, greater independence and speaking better mandarin! 😁

What have I learnt so far after making C go mainstream? Pushing ourselves out of our comfort zone made us realised what we had missed out, our potential and the possibilities. From putting C's immunity to a test, him drinking independently from a water bottle & cup, eating an ice-cream cone, kentang (english-speaking boy) to communicating in mandarin, recognising and writing Chinese characters etc. Things I thought he would not be able to do, he had done it.

Now we believe we can do more.

Beginning of his Journey

Caelen was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) on 13 Jan 2014, at age 10 months.

SMA is caused by a missing or abnormal (mutated) gene known as survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein in the body called survival motor neuron (SMN) protein. In a person with mutated genes, this protein is absent or significantly decreased, and causes severe problems for motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibres to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, nerve cells may shrink and eventually die without this protein, resulting in muscle weakness.

The hallmark feature of SMA Type I is that children are unable to sit or stand without help. They will require equipment such as strollers or wheelchairs for mobility. Swallowing and feeding will become difficult for children with this type of SMA and they will eventually lose the ability to swallow safely without aspirating. Children may eventually require a feeding tube to supplement their nutrition which permits the administration of liquid food into their stomachs.

Children with SMA Type 1 will also experience weakness of the muscles used for breathing, those that help expand the chest and fill the lungs with air. The chest is smaller than usual in these children and they begin to breathe using primarily their stomach muscles (belly breathing). The lungs do not fully develop due to this type of breathing, and coughing becomes very weak. It may be difficult for children to get enough air into their lungs while sleeping, and eventually throughout the day. Many of these children will require equipment to help them breathe; again this is based on what each family chooses. Weakness also leads to problems with the spine (scoliosis) and hips (displacement) that may lead to further loss of ability/function.

Source: Families of SMA