Caelen's Quest: July 2017

12 July 2017

All Is Well

I took a hiatus from blogging and Facebook due to our hectic schedule. An almost complete disconnection from social media sparked friends' concerns over our disappearance.

Sengkang Fire Station

Thank you all for the SMSes and emails. We are doing well. C has grown a lot, very outspoken and sociable. He is still with the kindergarten and AWWA but under a new initiative - a collaboration whereby AWWA played a more supportive role (in providing therapies, feedback and appraisal) in the mainstream environment. We have completed half of first school term under the new initative, adjustments are being made to fine-tune the programme. While it is too early to evaluate and comment, I guessed we are doing fine.

We usually spent our mornings at the kindergarten and home therapy sessions (physiotherapy & occupational therapy) in the late afternoon; leaving little me time after 3Cs - chores, cooking and caregiving. I was grateful for the June school holidays that provided the much needed break but it also made it difficult to resume our routine when new school term started.

Our days are quite monotonous at this point in time, mostly shuffling between home and school. Our first born will also be taking part in P1 registration exercise this month. We will be doing less blog posts and instead focus more on their education and personal development.

Please feel free to drop us a line if you ever miss hearing from us and are keen to know how C is doing. I would be more than happy to share an update. Love and God bless.

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