Caelen's Quest: Lunar New Year 2016

7 February 2016

Lunar New Year 2016

I thought I would spend CNY in KKH HD ward with C. He was brought in by paramedics and admitted in the early morning of Wednesday. My first ambulance ride with C in my arms, unsettling and unforgettable. Not something I wish to happen again but I'm glad it did. It was surely a confidence boosting experience, seeing how I could function under pressure and knowing our level of preparedness, definitely more room for improvement to better handle situations like this.

C was discharged shortly after he stabilised. Then a 40°C fever took us by surprise (we even packed our luggage expecting another admission), lingered for 2 days and went away as quickly as it came.

Today, eve of CNY, with his newly cut hair, he's looking so charming and grown up I couldn't resist snapping and sharing this picture of him. Very soon, he will be 3. He has given us 3 years of precious love, laughters and joy, much more than I asked for. I will have to work harder to make his wishes come true (chasing for his stander and powerchair). With mobility, I hope it will open up new doors for C and add more happy days to our time together.

Here's C in superb mood, wishing everyone a happy new year!

2 comments:

Unknown16 February 2016 at 09:35
Wishing u and Caelen happy new year! Thank God Caelen got well soon enough for CNY celebration. And yup. He looks very handsome with a new hair cut!!
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Lowell17 February 2016 at 00:10
He was only well temporarily. Fell ill after 1st day of visiting. Fever came back. Up till now he has yet to recover. Hopefully soon enough
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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