Caelen's Quest: I Am Well

19 August 2015

I Am Well

Suppose to do an update on how we celebrated SG50. Unfortunately my SD card was damaged and I lost all the photos and videos taken over the past 4 months. When technology and gadgets fail us, the impact is great as we are over reliant. Sad...

Past weeks, many had been asking about C after watching the show. I've spoken and met up with few really lovely, helpful people! I just wanted to say 'thank you' to all who got in touch.

C had been on continuous feed close to 1.5 months now. Making good progress so far. Digestion had improved and we had seen an increase in daily milk intake. His oral intake had gone up from 20ml previously to 60ml each feed. No doubt it's good he could tolerate more oral feed but anything he takes still poses a risk so we should never let our guards down.

Having said, C had grown significantly taller and slowly putting on weight. Im very thankful that he'd been sleeping well and staying healthy after the change and hope it continues to stay that way.

Let's enjoy a song by C!

4 comments:

Siew Ying20 August 2015 at 19:31
So happy to see this post! Indeed I've been thinking very much about well being of Caelen and was worried when you went quiet for a while. So good to see him putting on some weight. And I love his singing video - so cute!!! He sings so carefreely it warms my heart and made my day. Thank you Caelen, and Caelen mummy for posting it! ��
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Unknown20 August 2015 at 22:29
Thanks Lowell for posting this!! So happy to see little Caelen singing happily. Very nicely sang little Caelen. Aunty loves it! :)
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Jingfang21 August 2015 at 07:17
Glad to see this post!! Happy to know both Caelen and yourself doing well. Will continue to pray for the lil one. Jia you mummy!
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Lowell29 August 2015 at 11:31
Thank you ladies!
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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