Caelen's Quest: March 2016

30 March 2016

The First Word I Spelt

C is three. He has yet to receive formal education.

First time teaching C how to spell and I did not anticipate such a result. It was way too easy, I was dumbfounded. Taught him twice and he was spelling his name on 3rd attempt.

Perhaps something more challenging for him tomorrow!

With the return of haze, C has been having bad reflux and choking episodes since last week. Over Good Friday weekend, I started cough assist and regular suctioning to help clear the extra secretions. Hopefully the haze would clear and we will have clean air soon.

29 March 2016

Project Stylo Milo

C gets his haircut at a barber opposite our house. When he was younger, I used to carry him while the Malay uncle cut and shaved his head. Because of the way his head rested on my shoulder, both of us ended up with plenty of hair all over. Not a great experience. Now with C getting taller, he sits on my lap while I support his back and neck/head. Either way, it's tiring and uncomfortable for us. That prompted me to DIY.

Previously I have tried simple trimming but this time round, it's a full cut and shave on a headful of thick hair, a good 2 inches long (see photo on left).

What You Need:

Shaver

Scissors

Comb

Guinea pig

Nimble fingers

Pinch of confidence & courage

Results:

25 March 2016

Sweet Surprise on Good Friday

Life with our special child is like a roller coaster ride mixed with plenty of upside downs, sharp drops and spin arounds. Days with them go by this momentum, the highs and the lows.

But today, something happened for the first time.
Almost like a miracle.

Happy Good Friday!

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