Caelen's Quest: Stressful Month

30 June 2014

Stressful Month

It is 11:00 p.m. and I am just about to have dinner (yes, you read me... 11:00 p.m.).

In case some wonder where we've gone. Well, we've been busy fighting 'fire' at home. C spent 10 days in high dependency ward early June and while we were about to get on with the new routine (of suctioning and tube-feeding), C caught a new bug. He was re-admitted on Monday, spending another 4 days in hospital. Apart from the bout of broncolitis he was having, blood test and swabs showed the presence of Adeno virus and MRSA bug. As the virus was highly contagious, we were placed in isolation ward for the entire stay.

Coming home was something I looked forward to. Just as I was settling down at home and about to spend time with family, Cayla came down with a fever. Since both children were vulnerable to cross infection, they were immediately quarantined. While C was making a recovery, Cayla was sent to the hospital the other night and she is still fighting a stubborn fever at grandma's.

This is a stressful and difficult time for the entire family. The constant worrying and round the clock caring for the children is driving us nuts. Looks like it is going to be a while before I do another update on this blog. Be back ASAP...

P.S. Anya, Armaan & Bridget: Strangers we are but we will never forget your kindness and love for C. We got your message, yes, C is recovering. Thank you angels.

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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