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.
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!
Since November last year we had been filming a reality documentary with Threesixzero Productions and KKH.
《孩子，你慢慢来》'Because I Love U', a four-part series features the stories of five extraordinary families and their children with special needs. Learn how each family copes with the different medical condition. Be inspired by their love, perseverance and positive outlook as well as their hopes for the future.
Catch us every Tuesday, starting 30th June, 9pm on Channel U.
My seventh draft. Still unable to put thoughts into words. Perhaps it was difficult to adequately describe how I felt in writing. I would try.
Since April, C was bugged by viruses. He was down for 9 days with a persistent high fever (39.8 degrees at its highest). On the 5th day we made a trip to A&E for routine blood and urine tests which he cleared. While on the road to recovery, came occasional episodes of desaturation and frequent choke-coughs. We were expecting another bout of illness but it did not come. By early May, desaturation returned with a vengeance, accompanied by a fever and cough. Last I checked fever spiked to 39.5 degrees. I hope we could get over this without checking in at the hospital.
That aside, what worried me was C missing an entire month of physiotherapy (PT). He seemed so fragile especially with joints that sometimes crackle when moved. His limbs and hips so skinny that they could possibly give way when force applied. Everytime it crackled, my heart skipped a beat and I literally sweat my head out in the next 15 minutes checking for signs of pains and jutting bones. I was so afraid of breaking him I have since refrained from putting pressure under his armpits, lifting him by holding the sides of his chest instead and quickly supporting his bum, worried that his body may not hold. This, a reminder to discuss with his panel of doctors on x-rays to be done during his next medical review.
Yet amidst these unsettling events, something weighs on our minds.
Following my earlier post, Cayla underwent a speech and hearing test during the same period. She was also assessed by a doctor at the Department of Child Development (DCD), KKH.
Doctor found her to have coordination issues and had to commence regular occupational therapy (OT). She explained that since C has a genetic condition, it was best that Cayla be tested for SMA as SMA of other types may sometimes manifest itself in many ways, in Cayla's case - poor coordination and muscle weakness. We were also told to watch out for signs of regression as an indication/red flag. Like I had mentioned prior, we were aware that Cayla had issues and needed help, though this did not come as a surprise, it wasn't easy to take in. DNA test has been scheduled for end of this month. Felt like deja vu and I am not liking the wait for the results (usually takes a month), that I'm pretty sure.
Today Cayla went for her first OT session. Feedback was poor - weak limbs, poor coordination, zero balance, weak core muscles. She requires more than once-a-month OT. Therapist suggested intensive therapy i.e. once a week for a month and to see her again 2 months later. To top it up, Cayla also needed PT which will be scheduled soon.
I did not know how the rest would take the news but for me it was simple - Cayla has been neglected for the longest time (due to C's condition) and she deserves the same (if not more) attention and early intervention to help her along. One thing at a time, one step at a time. We will get there somehow.
Received an email from a concerned fan of C today asking why there had been no update for more than a month. My immediate response to that - GUILT!
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.
Today we checked in to 'Hotel KKH' for our 1 night 'vacation' stay again. C came in for a routine procedure - undergoing his 2nd sleep test this year. The recent one was done in February. Purpose is to determine if the current BIPAP settings serve him well, otherwise settings need to be adjusted to ensure that he breathes well.
As usual C cried whenever anyone came near him. A phobia he developed over last few admissions. These were taken during the preparation process. Needed to be all wired up - legs, body and head so as to take readings throughout the night while he sleeps.
C has grown heavier (from 9.2kg to 9.5kg. He's a very slow weight gainer) and lankier. This time I did not carry him while wiring in progress. All went well and he settled down a whole lot faster than last time (previously he cried for 1.5hr straight before dozing off to sleep).
I hope he fares well for the test. It will be encouraging to know that his lungs are still functioning well and he is maintaining his oxygen level at healthy level. Will know the results soon. At least I will find out from the tech how he does tomorrow.
This was his 3rd stay in a High Dependency Ward in 2 months.
Tried our best to manage it at home, went to the extent of supplying oxygen to ease his cough but didn't help much. By 2 a.m., he was coughing so bad he could hardly breathe. He soon ran a temperature and was looking weak. We knew a hospital stay was inevitable and admitted him on 17th.
The usual swabs, blood tests, x-ray ensued. This time round C was tested positive for RSV. He was desating on room air as well as on BIPAP, unable to maintain a healthy oxygen level. At his worst, doctors were supplying 4 litres oxygen with BIPAP support. Good thing was he made speedy recovery and weaned off oxygen quickly.
It is 11:00 p.m. and I am just about to have dinner (yes, you read me... 11:00 p.m.).
In case some wonder where we've gone. Well, we've been busy fighting 'fire' at home. C spent 10 days in high dependency ward early June and while we were about to get on with the new routine (of suctioning and tube-feeding), C caught a new bug. He was re-admitted on Monday, spending another 4 days in hospital. Apart from the bout of broncolitis he was having, blood test and swabs showed the presence of Adeno virus and MRSA bug. As the virus was highly contagious, we were placed in isolation ward for the entire stay.
Coming home was something I looked forward to. Just as I was settling down at home and about to spend time with family, Cayla came down with a fever. Since both children were vulnerable to cross infection, they were immediately quarantined. While C was making a recovery, Cayla was sent to the hospital the other night and she is still fighting a stubborn fever at grandma's.
This is a stressful and difficult time for the entire family. The constant worrying and round the clock caring for the children is driving us nuts. Looks like it is going to be a while before I do another update on this blog. Be back ASAP...
P.S. Anya, Armaan & Bridget: Strangers we are but we will never forget your kindness and love for C. We got your message, yes, C is recovering. Thank you angels.
Today is my 8th day at the hospital possibly many more days to go. Seems indefinitely delayed for many reasons.
I ate, bathed, slept and breathed hospital air. Ward 65 is my home now and frankly I am so in need of a good grooming session. Sadly, during my stay here, I only had a 30-min bonding session with Cayla when she visited.
Learning how to connect the parts
C checked in last Tuesday and was immediately hooked up and tubed. Over the last week, he made good progress and was slowly off drip, oxygen, day BIPAP support and therapies. Unfortunately C was traumatized by the never-ending suctioning and soon refused to feed orally thus the need for NG tube. In order for C to be discharged, I need to learn how to suction, tube-feed, intubate and change his NG tube (successfully under supervision, 3 times, once each day which equates to an additional 3-day stay in the hospital). So poor mommy here has been taking up hands-on sessions with the homecare team (enthusiastically) to speed up C's discharge. The enthusiasm is somewhat dampened by many hurdles along the way (i) the need for more than 10k worth of new machines e.g. BIPAP, humidifier, desktop oximeter, suction machine, oxygen tank, a long list of consumables. The acquisition of which requires time and this further delays his discharge (ii) the time required to complete my hands-on (iii) the tons of information on patient care, machine usage and care etc to digest (iv) meeting with medical social work to discuss on possible funding (if we are even eligible in the first place).
First time intubating (inserting tube from nostril to stomach) and suctioning C was rather successful (if you could just ignore his screams and cries during the process). Luckily I'm not one who hesitate at the slightest protest or squirms at the sight of blood. I'm still hoping for the earliest possible discharge. Till then...
C was admitted to KKH High D Ward just 3 hours ago.
It was a cough that started the day before, got worsen by the day accompanied with a high fever of 39.5°C. His sats were not looking good. SpO2 at 92 while asleep with BIPAP. It even dropped to 87 at one point. On seeing that C was in agony, we decided to make a trip to the hospital.
After initial assessment, doctors suspected a case of acute bronchiolitis, felt that he could do better under close supervision and advised for C to be admitted. In the next few hours that followed were many tests, poking and plenty of beeping from the machine. Prick test was done. Swabs from the nose, armpit and groin were collected. A drip set on his tiny hand. Oxygen mask donned his face. Sensor probe on toe to monitor his vitals.
C fell asleep shortly before 5 a.m. and as for me I'm blogging away to pass time. How to sleep on a wooden chair in a freezing room? And to think that I'm going to be here for the next few days sigh...
It had been more than a month since my last post. Like many had said, no news is good news.
C had been well so far, no major concern except during our last visit to KKH, Dietitian commented that he was underweight. Being his caregiver, I knew this was coming. We had been desperately trying to improve on the situation for a while now. C was also probably going through the "milk and food strike" growing-up phase. His milk intake took a plunge for no particular reason and was just more interested in play than food. Otherwise he was all well and happy.
The changes expected from us?
Need to add more cooking oil in his food and milk (maybe I'll skip the milk part. I honestly did not want to upset his tummy or cause any indigestion)
Need to meet the minimum 150ml to 180ml per milk feed, 4 feeds a day (I faced problem in squeezing in 4 feeds, 2 meals from 7am to 9pm. What could I do if C refuses to drink?)
Need to switch from giving blended to soft chunkier food (Didn't they last advised me to continue with blended food as tolerated? Why risk choking on foods he cannnot chew and swallow?)
Need to stop syringe-feeding him water and to use a straw / cup instead. That way I have better control over how much he drinks (fact: syringe gives me more control than letting C drinks from a straw or cup).
That did not go down too well with me because they were adding on issues on hand instead of offering solutions to my problems. I'm just going to try my best, stick to what works best for C.
In March, Caelen went for a series of follow-up appointments with various doctors. Here's an update:
Respiratory - Sleep Test results showed overall oxygen level at 93% (less than ideal of above 95%). Lowest oxygen level at 73% (frequent drops observed). Usage of a BIPAP machine during sleep is necessary to improve his breathing.
Chest Therapy - Senior therapist checked and noted that he is not using full lungs capacity to breath.
Physiotherapy - Weak trunk and limps. Need to continue with therapy at home to at least maintain and hopefully improve his strength.
Occupational Therapy - More than satisfied with his fine motor skills and cognitive development. Praised that he is a smart boy and is able accomplish complicated tasks suited for older tods.
Feeding - Doctors were concerned as he was no longer chewing his food and he seemed to have slight problem swallowing. Caelen was thus scheduled for a videofluroscopy early next month. Doctors also noted that his weight is not climbing as much as it should and I was ordered to thicken his milk as well as putting him on Valens Carborie.
After numerous trips to the hospital, Caelen came down with a fever 5 days ago with no other symptoms. Kaelyn's daddy and mommy (another special family) were kind enough to come check on Caelen (to ease my worries) and loan us their portable oximeter for monitoring his condition. That very night, Caelen's temperature shot up to 40 degrees with heart rate at 213, his vitals triggered the alarm. Drowned in the beeping of the machine, hubby and I sponged our boy for close to an hour, finally bringing his temperature and heart rate down to desirable level. Miraculously, his fever was completely gone the next day.
Caelen subsequently developed a cough in days that followed. We started putting him on BIPAP to regulate and aid his breathing. He cried incessantly each time we hooked him to the machine, we even tried to calm him by playing his favourite videos. Unfortunately, he vomited on different occasions, with one particularly bad that he erupted like a fountain. That I'll need to check with his respiratory doctor on the cause.
For now, his MMR inoculation this week had been postponed. He is on BIPAP (during sleep) for as long as he could tolerate. Otherwise, sometimes I think he fared better without.
On 28 Feb, Caelen underwent a Sleep Test at KKH. This test is often conducted for patients with sleep apnea or related sleep disorders. However, in the case of SMA patients, it is used to identify their sleep patterns, access respiratory functions and to also understand how the changes in airflow and pressure aid their breathing while asleep.
In order to take detailed readings of the above mentioned, technician needed to wire him up to a few machines. Took us almost an hour and a half to complete this delicate task with Caelen screaming and crying the entire time (not a great experience). He continued to protest for the next hour that followed, leaving me emotionally and physically drained. But the night ended well with him knocked out, totally exhausted.
We celebrated Caelen's first birthday cum fundraising the Sunday that followed. It was the best celebration ever and fundraising was a success! All these not possible without the help from families, friends and lovely people.
Heartfelt thanks to:
Mr Rahul Sharma & Ms Beh Hui Shiang the venue sponsors (very lovely place) for this party
Ms Isabel Lee-Shorrock the resourceful planner who has helped in ways I could never thank her enough
Many friends who came and helped out with the logistics and setup
Families and friends who came for the birthday party
All kind donors and supporters for the fundraising program
Special thanks to kind sponsors:
Mr Case Woo & Ms Tammy Sim for designing the 'Thank You' cards
After a good long CNY break, it was back to the routine hospital trips. There were 5 appointments in first two weeks of February and an additional two end of the month.
Anyway, I absolutely dreaded these trips. There is always a high risk of Caelen catching something either from the train rides (plenty of peeps who refused to don a mask when sick) or from the hospital where all kinds of bugs and viruses lurk. Home is still the safest.
Well, this was Caelen during a mask-fitting session at KKH earlier, in preparation for his sleep test on the 28th as well as for the BIPAP machine which he'd be using at home very soon. I need not elaborate but it was not a pleasant experience for both of us. Endless crying and screaming was all I remembered.
Trying on a Mini Me
On a happier note, a few things to anticipate this week:
We will be celebrating "Rare Disease Day 2014" with other special families on 1st Mar at Furama City Centre Hotel, an event jointly organised by Club Rainbow (Singapore) and Rare Disorders Society (Singapore). This is open to public so please do support.
We will also be celebrating Caelen's 1st birthday on the 2nd Mar!! It's yet another milestone for my baby boy. How can we not put up the best for him? So here I am, working really hard to put things together and honestly, it's tough juggling work, family, babysitting, chores, hospital trips and organising an event. Hoping it will turn out just fine.
Before I go, here's another pic of my little one with his 3rd pearlie on the way. Better late than never! It's about time he grows some teeth. Cheers!
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!
