Caelen's Quest: March 2015

24 March 2015

Physiotherapy

My wrist was in pain for more than a week due to ganglion cyst. Something which comes and goes. Although there was no obvious swelling but the pain prevented my wrist from moving the slightest bit. I felt handicapped when things came to a halt especially when forced to skip therapies for C altogether.

Yesterday I found myself conscientiously following through C's exercises in an attempt to make up for lost time (or muscles to be exact).

We started off with weight bearing and stretching exercises for his limbs. C had no issues with kneeling but absolutely hated going on his tummy. Being on tummy puts him in a vulnerable, helpless state as he could not move nor hold his head. That would usually send him wailing non-stop.

C survived his sitting practice but the strain on his core muscles was obvious as he struggled to keep his body upright. Before we knew it, C was taking deep breaths and using his hands to steady himself with a little support from me here and there.

Our last review with C's team of doctors had them suggesting the use of chest brace to help with his posture to allow for proper lungs expansion and better breathing. As far as I could remember, C previous experience with the neck brace was horrendous. Being stubborn as a bull, I highly doubt he would tolerate the chest brace. Nonetheless, we will give it a try at the next visit to the hospital.

Till that time, it's therapies for him to keep him active, strong and healthy!

12 March 2015

Magical Number Two

"The life expectancy of patients with Spinal Muscular Atrophy (SMA) Type I is generally considered to be less than 2 years." This typical prognosis, may no longer stands true given the early medical intervention provided to patients. Nonetheless, it is a significant milestone for most parents.

And C celebrated his second birthday a week ago.

Unlike the first, this year's celebration was kept small. Brick.inthebrickyard was very kind to bake for us on this important day. The dessert table was a visual treat and pleasure for our taste buds. I absolutely love the simplicity, colours and presentation. Something really great about them is that they bake for party of any size (even a small one like ours!) at very reasonable price. Do check them out.

Post by Brick. inthebrickyard.

We were honoured to also have with us, Annabelle from One-Stop No.1 Entertainment, who again generously sponsored the balloon wall for this special occasion. Annabelle has been with us right from the beginning of C's journey and we are blessed for having friends like her who stood by us.

Actually there were two celebrations - on a weekend earlier and on the actual day. Fruit cake with fresh cream courtesy of my sister & family and an ice-cream chocolate cake from Starpals - nurse Serene & social worker Siang Ping. C was especially happy with his ice-cream cake, amused and delighted that the cake was cold to touch. Siang Ping further amazed C with the smoke-like fog produced by dry ice in water. Oh boy, kids went gaga over it.

From lighting and blowing the candles, birthday song to cake cutting, C was seen grinning coyly. Those were the special moments that melted our hearts. Looking forward to your next birthday little man.

For other videos I have uploaded recently:
C learning how to count
C singing enthusiatically

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