Caelen's Quest: What I Want to Grow Up to Be

22 February 2016

What I Want to Grow Up to Be

Yesterday was Punggol Neighbourhood Watch Day. My daughter and her schoolmates were invited to perform for the special guests. We also took the opportunity to get out of the house for some outdoor fun.

It was a day of many first for the children. Cayla's first public stage performance. C first taste of candy floss and first time on the bouncy castle.

At the fair, C pestered me to go on the slide. Unfortunately he has grown so tall it was quite impossible for me to slide with him on my lap. Tried to talk my way out but like any 3-year-old, he was persistent, cried and gave me the 'bad mommy' deadly stare. In the end, we settled for a short play on the bouncy castle. He was all smiles and giggles. And it's mission accomplished! Nothing better than a satisfied, happy child.

Strangely, that particular night, C was found lying on his stomach tirelessly moving his legs. Curious I asked why he was doing that. Came this reply:

"I'm exercising my legs... exercising my legs mummy. I need to exercise my legs"

"I need my legs to be stronger... then I can walk"

Then again this morning, C made a remark out of the blue, "Mommy! I want to be a ballerina next time so that I can spin round and round and I won't fall down".

A little boy with so much positivity and dreams. He is so firm on getting stronger and being mobile. I hope he will make it closer to his dreams one day.

6 comments:

Unknown22 February 2016 at 16:41
Hope you realize your dreams Caelen !
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Anonymous23 February 2016 at 20:20
thank you for sharing with us all these private and precious moments. thank you Caelen for inspiring me to be better and to overcome the things in my life now.

I've been praying for a miracle for this sweet little boy and I really hope that the day will come soon. Press on, Lowell and Caelen!
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GK7 April 2016 at 17:10
Hello! I first read about Caelen in 2014 when there was a fund-raising to get him a "tomato chair". I have then been busy with being pregnant & giving birth to my second child, and didn't visit your blog for quite awhile. I'm very happy today to read about the progress that Caelen has made! Well done to both you & Caelen! Both of you have been very inspiring to us out here. Keeping my prayers to both of you. God bless & may Caelen's dreams come true :)
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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