Caelen's Quest: May 2016

12 May 2016

Opening New Doors

This morning...

Me: "Caelen, want to join me for a walk in the park?"

C: "Yes Mommy, I'd like to. Are we taking the stroller?"

Me: "No."

C: "Are you going to carry me?"

Me: "No"

C: (staring in silence)

Me: "You are going to drive."

C: "In my power chair?"

Me: "Yes, that's right! Shall we?"

C: (hesitant & unsure)

C's stander and motorised wheelchair arrived in early May.

For the past week, he worked hard on the stander. We started off with a 25-minute session (each day). C would tear and whine in pain after being released from the stander everytime. Legs that never bore weight and affected by contracture over the years, the exercise proved to be tough on his knees & joints. To relieve the tension and soothe his aching knees, warm compress were applied at the end of the session.

A week into the training regime, C was beginning to show greater tolerance. There were less complains and pains momentarily. I have also observed a (slight) increase in strength and toned leg muscles.

Here's a clip taken during session showed the two siblings dancing away. Quite a joy to see him standing tall like this :)

Coming back... following our conversation this morning, I brought C out for a ride. He test drove his powerchair outside our house once. Today being the second time and already out in public, he was feeling a little nervous yet thrilled.

C started off REALLY slow, inching forward like a snail. As I hurried him along, he sped up a little.

C saying, "I can go to the park myself. It's so much fun!"

We took a walk in the park avoiding few near miss here and there. I tried hard to explain and point out things he should be aware of but it was hard to make a 3-year-old understand the dangers. On our way home, I encouraged C to chase some birds. He got overly excited, sped off disregarding his surroundings, well, he crashed into a wall shortly after.

C saying, "I'm driving on a bumpy road. I'm having so much fun Mommy"

Finally, to face his last obstacle before calling it a day! C went into the lift like a pro but something else happened. Watch the clip to find out.

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