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.
Thanks to our not-too-far-away neighbour, C was down for 2.5 weeks in hazy October. We had to deal with fever, nose bleeds, desaturation and many choking episodes due to the increased secretion. He was off oral feeds too resulting in another round of weight loss. On a brighter note, he regained some strength after shedding off the extra pounds (peak at 11kg). All is well now as we resumed his oral feeds about 1.5 week ago.
Taken early Nov
Yesterday, C went for his quarterly routine review with the medical team. Nothing of concern except his pinky is slightly stiff. No need for videofluoroscopy soon as he had been eating fine. Sleep test had been scheduled mid of next year since no major issues with O2 saturation. We've also explored the option of medication - Salbutamol that some patients in other parts of the world were taking claimed to improve strength and function but it's something to think about later. For now, so long C remained well, that was all I needed to know. Even if it meant to continue with our routine days of tubes, syringes and machines. I am thankful and happy.
There was something else I'm really excited to share here. With C turning 3 in about three months' time, I wanted to make a wish with Make-A-Wish Foundation. It started off with C's followers asking if I had thoughts of buying a stander, which, was long on my next-to-acquire list. After gathering information needed, I had a discussion with the therapists at KKH. For some reasons, while deciding if we should proceed, I had a change of heart, a sudden realization. I pictured C not on a stander but power chair instead. The thought of him cruising down the park, the first step to independence, the smile on his face, the joy he would have felt that instant flooded my heart with emotions. Without a doubt, I went with the power chair. And yes! we would be back next month for an initial assessment on his suitability (to use a power chair) before putting it up to the Foundation. Regardless of how this develops, the idea alone was exhilarating. I am sure C would be really excited too.
As for the purchase of stander, we would still pursue it but might take a tad longer. Upon checking with DNR, the models deemed suitable for C all cost between $5,000 to $6,500. We are trying our best to raise the funds needed... hopefully soon.
What we did daily:
Stretching exercises - especially hamstrings as they were getting tight
10mins of standing - wearing his gaitors and AFOs (probably the max amount of time I can hold his weight, anything more puts a strain on my wrist)
10mins of independent sitting - some assistance needed when he is off balance. Almost dropped him once when he lunged forward. Luckily he landed between my knees *shudders*
3hrs of sitting on his Tomato chair. C likes to paint these days. On the right is a piece of work C painted over 2 days.
Here are some vids on his progress:
If you referred to vids in my older posts, his posture was bad, usually with a slouch. Now he seemed to have improve much by using his arms to steady and prop his body upright.
Here you see that he had greater control and was able to open and close his legs. In the past, his legs would give way and flop open like a froggy.
P.S. We are still looking for suitable teacher to home-school C. If you do have any contacts, please link us up. Thank you!
