A two month wait, vendor finally has a chair suitable for C to try out. He was super excited over the trip to the warehouse today. Everything went really well. A mere 5-minute crash course, C was on his own steering his chair. Guessed what was the first thing he wanted to do? To play catch with daddy and mommy!
There were no words to express my joy in seeing him moved around on his own. We cheered, we clapped, we smiled and we saw the sparkles in his eyes. Priceless. The videos say it all.
We recently did a story with Our Better World, a digital storytelling initiative of the Singapore International Foundation (SIF). The story was released on website and on Facebook on 24 February 2016. For those who have not read, do check out the sites.
There will also be a photo exhibition - World Through My Eyeson 28 February 2016, 9.30am to 2.30pm at Blk 7 Gillman Barracks, Malan Road, Singapore 109444. Exhibition is organised by RDSS. Please do show your support!
"Mummy! Mummy! Who's here??" C asked excitedly, shaking his body.
He was expecting a mini birthday celebration this afternoon and insisted on waiting while resting at the sofa. But little did he know that Nurse Serene, Uncle Desmond and Auntie Cindy had planned a surprise. When the special troupe made a grand entrance, goofy clowns, adorable puppets, ukulele and all, C only had eyes for Nurse Serene. He was quick to scan the crowd and immediately called out "Is that Auntie Serene? Auntie Serene is here!". Pretty sure that made Nurse Serene's heart fuzzy and warm kekeke.
What followed was an hour of clowning around, singing to catchy tunes, balloon twisting, puppetry and silly magic tricks. It was made extra entertaining because of C's participation.
Here are some clips of them singing the birthday song and C awed by a 'magic trick'.
And finally, the cake and candles blowing. Many thanks to Starpals and volunteers who made this possible. C had so much fun!
Yesterday was Punggol Neighbourhood Watch Day. My daughter and her schoolmates were invited to perform for the special guests. We also took the opportunity to get out of the house for some outdoor fun.
It was a day of many first for the children. Cayla's first public stage performance. C first taste of candy floss and first time on the bouncy castle.
At the fair, C pestered me to go on the slide. Unfortunately he has grown so tall it was quite impossible for me to slide with him on my lap. Tried to talk my way out but like any 3-year-old, he was persistent, cried and gave me the 'bad mommy' deadly stare. In the end, we settled for a short play on the bouncy castle. He was all smiles and giggles. And it's mission accomplished! Nothing better than a satisfied, happy child.
Strangely, that particular night, C was found lying on his stomach tirelessly moving his legs. Curious I asked why he was doing that. Came this reply:
"I'm exercising my legs... exercising my legs mummy. I need to exercise my legs"
"I need my legs to be stronger... then I can walk"
Then again this morning, C made a remark out of the blue, "Mommy! I want to be a ballerina next time so that I can spin round and round and I won't fall down".
A little boy with so much positivity and dreams. He is so firm on getting stronger and being mobile. I hope he will make it closer to his dreams one day.
This morning, we attended a mini CNY celebration at Cayla's school. The whole family participated because she would be performing a dance item and was looking forward to our attendance. Despite wanting to cheer her on, I was quite concerned with C's trip to the school, worried he might pick up nasty virus/bugs since he has not fully recovered. My concern was confirmed when coughs by the little ones filled the room. I tried hard not to be bothered by it, instead focused on C. But subconsciously, it was tough.
Anyway, first greeted us was a lion dance performance. It was C's first time watching one. He was receptive except the occasional complaint of loud dongs and clangs, which was amplified in a closed environment. Before we left for the school, C explained that the lion was a fake because men were hiding inside and they spit candies and vegetables (haha funny how he put it).
He later took pictures with the 'monkey' monkeying around but failed. C was totally uninterested.
Grinning while watching lion dance / Weird looking monkey
After Cayla's dance performance, C and I took a brief stroll in the park. We stopped by the community garden to admire the blooms when an uncle spotted me from a distance, came over and invited us in. Some lovely pictures I snapped while C was busy chatting with auntie and spotting bricks, pebbles and bees.
As usual, our walk in the park became an extended one after being chatted up by aunties curious about his NG tube. Funny how negative it always turned out explaining his condition, "he has a condition"; "he is suffering from SMA" even though I no longer view it as a disorder but just a child who does things differently. Nonetheless, I welcomed the curiosity as it brought us closer to the folks hanging out in the park, opened up new conversations and more people to welcome us with smiles on our next walk.
I thought I would spend CNY in KKH HD ward with C. He was brought in by paramedics and admitted in the early morning of Wednesday. My first ambulance ride with C in my arms, unsettling and unforgettable. Not something I wish to happen again but I'm glad it did. It was surely a confidence boosting experience, seeing how I could function under pressure and knowing our level of preparedness, definitely more room for improvement to better handle situations like this.
C was discharged shortly after he stabilised. Then a 40°C fever took us by surprise (we even packed our luggage expecting another admission), lingered for 2 days and went away as quickly as it came.
Today, eve of CNY, with his newly cut hair, he's looking so charming and grown up I couldn't resist snapping and sharing this picture of him. Very soon, he will be 3. He has given us 3 years of precious love, laughters and joy, much more than I asked for. I will have to work harder to make his wishes come true (chasing for his stander and powerchair). With mobility, I hope it will open up new doors for C and add more happy days to our time together.
Here's C in superb mood, wishing everyone a happy new year!
Call me 'Kiasu', call me 'Kiasi'. I had kept C mostly indoors for the past weeks just so he stayed healthy and strong for today's appointment with the Rehabilitation Clinic. This appointment was booked a month ago to assess C's ability to steer a power chair.
First look at the power chair, C bombarded me with questions e.g. "is this a power chair?", "what colour is it?", "I can sit on it?", "I can drive?", "can I turn it on?", "where to press?" etc. He was obviously as excited as I was.
C's virgin pilot was quite hilarious. As he steered, the chair spun in circles. Techie held on to the chair to prevent it from going out of control while therapist broke C's grip on the toggle. This scenario was played over and over again. Instead of showing fear, C wore a cheeky grin on his face and 'drove' with zest. I couldn't tell if he was enjoying the ride or getting a kick out of those two hahaha.
Anway, here is the first video. To be honest, it was a lousy clip. In the midst of filming, things got out of hand and I had to ditch my phone to shift furniture out of his way.
Here's the last video after several attempts. He managed to control his grip better and went slow on cue. Still needs constant reminders and guidance. But I guessed he did well given that he's just 2yo. I'm sure more practice would help him get the hang of it.
After the trial and assessment, therapist concluded that C had more than enough strength to steer. She suggested we go with a US model power chair which has better compatibility with other parts and would allow for greater customisation mainly the headrest, base, harness, seat and expansion.
Now, we wait for vendor to gather the parts, assemble the demo set and to fix a date for the next trial at the warehouse. We will get to try the touchscreen interface too to determine which mode of control suits C best. Meanwhile, the acquisition of a suitable standing frame is also being looked into. It will take a while but surely getting there.
A two month wait, vendor finally has a chair suitable for C to try out. He was super excited over the trip to the warehouse today. Everything went really well. A mere 5-minute crash course, C was on his own steering his chair. Guessed what was the first thing he wanted to do? To play catch with daddy and mommy!
