Caelen's Quest: New Shoes For The Prince

7 August 2014

New Shoes For The Prince

At recent occupational therapy session:

OT: Hi Caelen, shall we stack some blocks today?

(Showing C how to stack)

C: (looking eager takes a block and throws at therapist)

OT: Nooo... let's try again

(Holds C's hand and stacks a block together)

OT: Yay! Your turn!

(showing encouragement to spur C on)

C: (picks up a block and throws it across the table)

C: Yay! Your turn! (with great enthusiasm)

All: LOL!!

Physiotherapy was entirely the opposite with C crying throughout. Therapist tried something new with him though (as shown in pic below).

This is to test his tolerance for standing upright, supposedly good for his lungs, secretions drainage, digestion etc. It is not fully upright as this is C's first attempt so the incline is approx 60° - 70°. He's obviously not enjoying any bit of it. Even his favourite ball couldn't pacify him.

Due to his condition, therapist had also suggested that we start looking into limb orthotics to manage any misalignment that may arise due to muscle weakness.

Current condition of his feet

A good start would be to acquire AFO for his feet. A custom made pair would cost us $500. This would be my assignment for August - to book an appointment with the specialist and get his 'shoes' done.

P.S. : 2nd hospitalization bill came, another $3,500. His less than 2 weeks stay in June cost us a total of $15,000 >_<||| Seriously need to work hard to keep C healthy!

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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