Caelen's Quest: Haze Haze Go Away

2 October 2015

Haze Haze Go Away

Worst haze so far. Not the most severe but the longest running. We've been confined for 3 weeks now. I'm used to not setting foot outside of house entirely but this was pure misery, being cooped up at home with windows and door shut made me really depressed.

C started choking and coughing around the same time haze striked. We were unsure if he was affected by the haze (causing an increase in secretions) or part and parcel of regression. I had observed a decrease in strength (upper limbs and trunk). C complaint about his hands not reaching the top part of his tablet and not being able to turn to his sides. Perhaps we would have a better idea once haze clears up.

C was supposed to start class on a Monday 2 weeks ago. His teacher came down with a fever and the classes were adjourned. Hopefully we would have our 1st lesson next week. Looking forward.

Anyway despite the little illness, C stayed cheerful all these while. Always his cheeky self when going through the chest percussion and suction routine. I didn't know if there were other children who could laugh, talk continuously, and joked around (pretend to retch) during suctioning. C is such a child.

Today we did our standing practice in the living room. Something amusing happened. C Sang and danced to the Mickey Mouse Clubhouse song. Check out the video (need to turn up the volume):

Conversation with the therapist:

Me with the time at home, began to explore new ideas. I've started another DIY project to help C overcome some of the constraints faced, in the hope to minimise his frustrations. Can anyone guess what I'm going to make?

If we were to get gadgets, it would cost a bomb and most likely not available here. While improvising does keep costs down, it might not achieve the same result as the actual gadget would but I'm hoping it could still help C in some ways.

Last 1.5 years we were considered novice SN family. Our lives evolved the diagnosis, machines and coping with changes to routines. I supposed we have graduated and moving on to the next phase. Why do I say that? Cos I'm facing problems the 'old birds' faced - machines breaking down and giving problems, needing to acquire/upgrade existing ones, to make the days more constructive to meet the child's growing needs so on and so forth. Phew! New challenges await!

2 comments:

Unknown2 October 2015 at 17:43
Caelen video really makes my heart smile... =) Hang on little fighter! Jia You..
My guess: Is that for training arm strength?
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Lowell3 October 2015 at 12:59
Auntie Jolie always 1st to leave us a msg 😆

Yeah can use it to exercise as well as to support his arms
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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