Caelen's Quest: All So Familiar

26 November 2014

All So Familiar

We are back (on Monday) from our cruise trip! An energy draining but once in a lifetime outing for the family. No doubt it was tiring for the adults, the children enjoyed it much. C kept asking to go 'gai gai' even after we came back.

There were many first - first time the siblings shared a bed, Cayla's first cruise, first family trip, first travel with machines in tow. All these not possible without special arrangements by Club Rainbow & RDSS. Thank you!

Today also marks the end of our Indiegogo - A Chair for Caelen campaign. It will take another 2 weeks before we get an accurate idea of how much has been raised after the deduction of fees. We will be coming back to that in due course.

Meanwhile C is not doing so well. He has been having this chesty cough for almost a week now. His sats began to drop last night and it does not seem to get better tonight. The oxygen concentrator we have purchased a few months back now parks next to the bed instead of its usual corner. C's O2 at 95% is looking a little bit weak (even with oxygen supply). I guess it's back to the routine of doing chest physio, suctioning, full tube-feeding and round the clock monitoring again.

Hope we will be able to manage this at home and that C gets better soon.

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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