Caelen's Quest: Reunited

3 July 2014

Reunited

After spending the week at grandma's nursing her fever, Cayla is finally home (with an occasional cough). The siblings missed each other so much they couldn't wait to spend time together. I guessed a brief playtime between them would do more good than harm. See how they laughed and held each other's hand. Such a beautiful moment to cherish.

A short recap on C's last discharge. I had completed the necessary hands-on trainings with the home-care nurses and came home with a truckload of machines. Here are our latest additions:

From Top (L to R): Suction machine, oximeter, BIPAP, humidifier

Bought a trolley from IKEA that perfectly accommodates the equipment. It now occupies the space which used to be my bedside drawer.

Resuscitator, syringes, tubes, masks, gloves, sanitizers etc

The low built-in storage next to the trolley now stores the consumables... lots of them! No more space for oxygen cylinder so we had to keep it elsewhere.

Apart from the daily suctioning, C has gradually resumed his oral feed and soft diet (moderately blended meat and vegetables with porridge). He has also been scheduled for another videofluoroscopy session in early August to re-assess his ability to swallow. We hope C maintains his health and continues to enjoy his privilege to eat.

Next to consider - a proper stroller to ferry C and his equipment. Costly!! >_<

Big smile from Caelen! Lots of love ♡

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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