Playing keep-up with C's daily routine & therapies in addition to caring for my daughter and keeping this household functional has taken its toll on me. Ending a typical day at 1.30am is a norm and by then, me-time is the only thing I yearned for. The thought of updating this blog came to mind countless times but parking myself at the laptop churning out content is probably the last thing I'm capably of doing.
Having said, this update is long overdue and I still owe credit and thanks to many, it'd better be good. So here goes my first post for 2015 *diligently typing away*...
Time flies.
A year ago, I was thrown into my new role while in a state of disbelief, went through a steep learning curve caring for C and constantly wandering like a lost sheep. It was as if a tornado hit our lives, swept everything within its path and tossed them back mangled and in tatters. It felt like the end of normality.
Life is still tough but better in comparison to prior, given that we are getting the hang of things and our hard work is beginning to pay off. But first, a short recap how 2014 came to a close:
- Had a simple Christmas party joined by family members, Kaelyn & family, Bee Har & camera-man (we've been filming a reality documentary for a while now. the details will come when time is right).
- Did an article with TNP again on Boxing Day to show our gratitude for the lovely people that came into our lives.
- We wrapped up 2014 with an indoor & outdoor family photo-shoot, courtesy of Roy Chuang Productions. BEAUTIFUL isn't it? Roy did a fantastic job in capturing THE moment and transforming these feelings into pictures, locking memories into tangible keepsake. For that, I am very thankful.
So coming back to things changing for the better...
It was only in recent months C and I established a routine. It took us a year of trial and errors, numerous hospital visits and exploration of options to come to these:
- The monthly 3 to 5 visits to KKH have been drastically cut down to a single consultation at Multi-Disciplinary Clinic every quarter, a new setup initiated by the hospital to better care for neuromuscular patients. C gets to see a team of doctors i.e. neurologists, respiratory physicians, orthopaedic surgeons, physiotherapists, occupational therapists, speech & language therapists in a single session.
- The monthly physiotherapy session at KKH is now replaced by bi-weekly private therapy sessions at home. Being in familiar grounds means greater cooperativeness and that brings about a positive chain reaction - time is better spent on working his muscles (not calming his cries), potentially more room for exploration, increased effectiveness and the results are quite evident. Costly but worth-well.
- Twice monthly visits by StarPals nurse kept things in check. C's health is consistently monitored. Should the need arise, StarPals is able to provide interim support, care and advice thus cutting down on unnecessary trips to A&E.
- Daily half hour leg massage/stretching, 2-3 hours on his AFO, 1 hour physiotherapy exercise, 15-min chest therapy, 5-min on cough assist machine, one-time suctioning before mealtime, half hour on electromagnetic therapy, 2-4 hours sitting upright.... these need to be squeezed in between C's 3-hourly feeds, outdoor walks, naps and shower require utmost discipline and coordination on my part (IMO, this is the most difficult to adhere to and thus took the longest time to form a routine).
- We have purchased various medical equipment along the way with the latest addition - a cough assist machine to help clear secretions from the lungs. The whole collection assures that we are adequately equipped to care for C on a day-to-day basis. We have also installed a ramp at our doorstep to facilitate C moving in and out of the house.
- Sitting sessions on the tomato chair have to be constructive, productive and educational. These activities mainly involved hands-eyes coordination, stimulation of the mind and cognitive play. Be it painting/drawing, playing on the tablet, cutting dough, stacking blocks or simply self-feeding. One thing for sure, apps are screened and tested by mommy before they are granted a place on the tablet! Below you will get to see some of the progress C made at 22-month-old.
Since C was intubated in October 2014, he has gradually moved from full tube feed to partial oral feed. He has been taking 50-70ml of milk during every milk feed and taking his lunch e.g. 1/4 bowl porridge orally. I have also re-introduced pinky-size baby biscuits into his diet. Previously after being tubed, he could no longer tolerate biscuits and would choke each time eating it. Now he can finish one whole baby biscuits in little pieces.
Apart from naming colours, vehicles, shapes, fruits and animals, C can do a whole lot more. Below are links to YouTube videos on:
- C playing tablet. He is good at puzzles, memory and matching games! Previously he was able to do 4 & 8-pieces puzzles. Now he can do 12 to 18-pieces jigsaw puzzles. Give him a tablet and he can switch from app to app, play videos on YouTube and he even knows how to skip the ads!
- C counting from 1 to 10. He also recognises them in written form. Now can count to 13.
- C singing. His favourite song 'The Wheels on the Bus'!
- C on alphabets. Last I checked, he knows 20 out of 26 alphabets. He can name them at random.
- C on sounds recognition. Super adorable isn't it?
Anyone interested in teaching C?? I think he would really enjoy learning and studying.
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