Caelen's Quest: Caelen Loves To Talk

16 May 2014

Caelen Loves To Talk

Having seen how intelligent and creative Cayla is, we naturally held high(er) expectations for C. His diagnosis hit us hard and destroyed much of our wishes for the future. Ironically, C turned out to be quite a talker and that quickly filled the voids in our hearts and rekindled hopes.

C is currently obsessed with cartoons, balls and books. He loves to read and would tirelessly flip all of Cayla's books, one after another. He participates actively by spontaneously repeating some of the words we narrated, exhibiting a huge sense of achievement whenever he does that. What's more amazing is that C speaks to us in almost complete sentences (right from the beginning when he started talking at 1yo) and addresses himself as "我". How many 1yo child does that really?

Being a curious and eager learner, C expanded his list of vocabulary quickly. And this proud mama here just could not stop herself from sharing how much C has learnt so far.

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Baby / Ball / Balloon / Banana / Bear / Bird / Blow / Book / Bottle / Bubble / Bye Bye / Car / Chair / Close / Cover / Dog / Doll / Door / Duck / Egg / Hello / Hold / Jump / Knock / Milk / More / Monster / Morning / Night Night / No / No More / Open / Shoe / Sticker / Tap / Throw / Tiger / Turtle / Walk Walk / Want / Water

Donald Duck (Character) / Elmo (Character) / Gai Gai (Jalan Jalan) / Mickey Mouse (Character) / Moo Moo (Cow's moo) / Mouk Mouk (Character) / Mum Mum (Makan/Food) / Ng Ng (Poo Poo) / Orh Orh (To sleep) / Peppa Pig (Character) / Pers (Pampers/Diapers) / Pong Pong (Shower) / Quack Quack (Duck's quack) / Toot Toot (Pacifier) / Uh Oh (Oh No) / Wah! (Amazed/Excited) / Woh Woh (Dog's bark)

我要这个 / 我要那个 / 我要抱抱 / 我要拿 / 我要看 / 我不要 / 我要吃这个 / 我要milk milk / 我要喝水 / 我要去walk walk / 我要戴 / 粉 / 喂 / 眼镜 / 服 (衣服) / 丢掉 / 睡觉 / 爸爸 / 妈妈 / 姐姐 / 嫲嫲 / 爷爷 / 姑姑 / 公公 / 婆婆
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Below is a clip showing his love for balls and demonstrating his ability to link words "throw" and "ball" together.

http://youtu.be/nf_z8jdm8as

Honestly, we do not have concrete plans for C yet. But having seen his love for learning, perhaps it's time to consider the possibility of putting him in special school in the near future.

2 comments:

blw.chung16 May 2014 at 18:39
I've been following your blog and it is so good to see that both Caelen and you are doing well. You're doing a great job mummy! God bless
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Lowell16 May 2014 at 23:27
Hi Chung, I recognized you from your initials. Have been hoping to match a face to the name. It's great to receive your message. I can now thank you personally for your help. Many blessings to you and family too!
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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