I Can Drive Mommy!

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.

Exciting Plans Ahead

The longest break by far.

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!

Project Hovercraft

Project Hovercraft is complete! It's a DIY project to help C counter gravity pull, allowing his arms to 'hover' and move freely.

Yesterday we did a pilot test without the arm slings. He was quite receptive to the idea. And today, the moment I took out his tablet, C immediately requested for the 'loops'.

This is how the structure looks:

Costs:

Clothes drying rack   $28
Set of resistance bands   $24.90
(Bands are of different resistance. If you require 2 of the same load, get 2 sets cos I don't see them selling single bands. It didn't matter to me so 1 set is fine. I use the rest them for my stretching exercises)
Carabiners   $14
(I use 4 large and 2 small ones. Mix and match different sizes to obtain the length you require)
Harness   $11.80
(In video, I used an adult wrist guard. A pair of wrist guards or child arm slings can be expensive so it's up to individual which to use so long it works. As a cheaper alternative I bought a pair of full body harness for miniature dogs haha. The widths are adjustable, I figured they might work. Will update with pics if they really do)
Total damage: approx $78.70 +/-

Haze Haze Go Away

Worst haze so far. Not the most severe but the longest running. We've been confined for 3 weeks now. I'm used to not setting foot outside of house entirely but this was pure misery, being cooped up at home with windows and door shut made me really depressed.

C started choking and coughing around the same time haze striked. We were unsure if he was affected by the haze (causing an increase in secretions) or part and parcel of regression. I had observed a decrease in strength (upper limbs and trunk). C complaint about his hands not reaching the top part of his tablet and not being able to turn to his sides. Perhaps we would have a better idea once haze clears up.

C was supposed to start class on a Monday 2 weeks ago. His teacher came down with a fever and the classes were adjourned. Hopefully we would have our 1st lesson next week. Looking forward.

Anyway despite the little illness, C stayed cheerful all these while. Always his cheeky self when going through the chest percussion and suction routine. I didn't know if there were other children who could laugh, talk continuously, and joked around (pretend to retch) during suctioning. C is such a child.

Today we did our standing practice in the living room. Something amusing happened. C Sang and danced to the Mickey Mouse Clubhouse song. Check out the video (need to turn up the volume):

Conversation with the therapist:

Me with the time at home, began to explore new ideas. I've started another DIY project to help C overcome some of the constraints faced, in the hope to minimise his frustrations. Can anyone guess what I'm going to make?

If we were to get gadgets, it would cost a bomb and most likely not available here. While improvising does keep costs down, it might not achieve the same result as the actual gadget would but I'm hoping it could still help C in some ways.

Last 1.5 years we were considered novice SN family. Our lives evolved the diagnosis, machines and coping with changes to routines. I supposed we have graduated and moving on to the next phase. Why do I say that? Cos I'm facing problems the 'old birds' faced - machines breaking down and giving problems, needing to acquire/upgrade existing ones, to make the days more constructive to meet the child's growing needs so on and so forth. Phew! New challenges await!

I Am Going To School

Taken in Aug - grown up look

Last week C and I both came down with a fever. I had a really bad throat and was worried C might be having the same. Luckily, whatever bugged us went away as quickly as it came and we had been staying indoors since largely due to the haze.

Taken in Sep - Chubby Caelen

C had been 'eating' well and putting on quite a bit of weight, looking chubbier these days. Although growing bigger, he was also weaker. The strength he initially possessed now seemed inadequate to serve his bulkier body. At sitting position, his head "dropped" more often than desired. The other day, while using both hands to support his chin, he said to me," Mommy, mommy, help me! My head is too heavy! Can I take out my head?". Funny things he say...

Physiotherapy and any form of exercises are now tedious tasks for C, they tire him out easily. Simple task like holding a spoon became a struggle (he now uses a small KFC plastic spoon to eat instead). Passing his milk bottle to me became a chore and he chose to throw in on the bed. Removing his pants and diaper were no longer the things he loved to do. These were some of the things about SMA we grew to embrace and accept. With little adjustments here and there, we went on with life as usual.

Oh there is one thing to be excited about. We found a home-based teacher for C! He will be starting his first lesson next week. This is something sitting on my wish list for the longest time (ever since I started this blog), waiting to be fulfilled. I think C is excited about attending lessons too. Let's hear what he has to say:

 

Hope to bring you more updates on his lesson very soon!

My Favourite Things

Hello everyone!

Every morning mommy will place me on my special chair while we watch cartoons and have brunch together. Today I am having cereals! I love them because they are crunchy and I call them 'crispy'. Chocolate, cake, ice cream and gummy bears are a few of my favorite foods too. Even though I only get nibbles, I'm satisfied to be able to eat.

Mommy insisted I brush my teeth thoroughly otherwise monsters will grow in my mouth and I won't be able to eat my favourite foods anymore. This I happily obliged. *Whispering* Sharing my secret to healthy teeth with you - always use a good toothpaste (with 1,000ppm of Floride) to effectively prevent decay. Here's what I use:

Rice grain size for me; pea size for older children

I know a lot about vehicles because they are my favourite toys. I have boxes and boxes of them! 

My toys mostly came from daddy & mommy, uncles & aunties, and kinder surprise eggs (Oh boy, I loved surprise eggs! Do you know YouTube has loads of videos on all kinds of eggs big and small? I always marvel at what comes out of them). By the way I like Legos too! I can build any cars I imagine them to be although it takes me huge efforts to stack them together.

The last thing on my favourite list is none other than tablet. Mommy dislikes when I ask for it often but she seems amazed how I picked up words and gained so much information & knowledge from it, she couldn't keep the tablet from me.

Do you know that I picked up swimming on YouTube? I was watching videos of children having fun in the pool and I learnt that you must kick your legs to stay afloat. Now whenever Cayla jie jie brings me to the pool (on our huge bed), I can swim too! That was so much fun.

I have a pet turtle on my tablet (and 2 real ones in the tank). I learnt how to shower, feed and play with it. See! I'm capable of caring for others too. Lately I'm quite interested in dinosaurs and have been learning their names diligently. Hopefully next time I'll be able to tell you more about them soon.

P.S. Mommy's laptop broke down few days ago. It will take time before she can blog properly again.

I Am Well

Suppose to do an update on how we celebrated SG50. Unfortunately my SD card was damaged and I lost all the photos and videos taken over the past 4 months. When technology and gadgets fail us, the impact is great as we are over reliant. Sad...

Past weeks, many had been asking about C after watching the show. I've spoken and met up with few really lovely, helpful people! I just wanted to say 'thank you' to all who got in touch.

C had been on continuous feed close to 1.5 months now. Making good progress so far. Digestion had improved and we had seen an increase in daily milk intake. His oral intake had gone up from 20ml previously to 60ml each feed. No doubt it's good he could tolerate more oral feed but anything he takes still poses a risk so we should never let our guards down.

Having said, C had grown significantly taller and slowly putting on weight. Im very thankful that he'd been sleeping well and staying healthy after the change and hope it continues to stay that way.

Let's enjoy a song by C!

A New Routine

Jan 2014 - 10 mths old

The first time C visited the Zoo was 1.5 years ago. Too young to remember anything. It was more of a must-visit-the-zoo-before-he-turns-one affair.

Last Saturday, we brought C there again. It was meant to be an educational trip. We thought he would be happy to see and name the animals he came to know through books and YouTube. It was also one of his very few trips out of the house in recent months.

Jun 2015 - 2 yrs old

Having glanced through my blog posts, I realised C had not been in the best of health and it was hard for me to acknowledge that his tiny body was failing him little by little. It was even harder to see how each episode took a toil on his body.

He is now thinner than before as he struggles with his milk feeds. C chokes and coughs bad due to reflux so much so he has problems keeping his milk down. It has also greatly affected his oxygen saturation, its lowest at 80%.

We have thus reduced the volume of each feed and started medication - Domperidone to relieve some of these symptoms but his oxygen saturation did not show much improvements over the last two days. In fact C began to show signs of dehydration - cracked bloody lips, changed in nail colour, tiredness, less urination, increased agitation, weight loss etc.

Hence this afternoon, doctor made the decision to put him on 20-hour continuous feed via milk pump. 100ml of milk is being pumped into his stomach over 4 hours, 5 times a day repeated over the week. In the next 2 days we will review whether continuous feeding benefits/improves C condition.

So far C has responded favourably with his oxygen saturation and heart rate returning to baseline. He no longer coughs as much and low grade fever is gone. With him constantly fed, though at a lower volume than his original daily intake but if well tolerated, we could slowly increase the intake to optimum volume (hopefully to see some weight gain in the near future).

The awful thing about milk pump? Carrying an additional machine plus milk bag around is definitely not too welcoming. It also meant that as long as C is on the pump (regardless of time, be it till 3or 4am), I need to be awake to help untangle the mess while he sleeps because the tube tends to wrap around him when he flip and toss. Not liking it at all for loss sleep.

Finally before I go, a quick update on Cayla's DNA results - she tested negative for SMA but has been recommended to go for therapy/counselling with the psychologist.

If Caelen's diagnosis has affected the adults badly then the impact on the siblings would often be greater as they are not capable of expressing and dealing with complex emotions (e.g. the disappointment of not having an abled brother who could run and play with her; not receiving equal attention as the brother, not understanding the reason why she has been robbed of the love and attention she used to be receiving). Hopefully with professional help, her behavioural and psychological issues can be better managed.

**For those who missed episodes of the 4-Part Documentary Series - 孩子,你慢慢来 Because I Love U, you can watch the videos here**

Story of Caelen on Television

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.

Uphill Task

Tuesday

C woke from his nap feeling warmer than usual. I thought nothing of it initially  He was his playful self but when he declined to eat, I grew suspicious. Grabbed the thermometer and it slapped me with three digits 386. Geez no symptoms, no change in baseline "Let's give him his feed and monitor further" I told myself.

Close to 3 hours later...

C acted strange. He grew quiet and laid very still. Repeatedly pursed his lips and told me "mouth very sticky". He made a feeble attempt to turn to his side, winced and gave a look of discomfort. His breaths were shallow, stomach bloated and heaving. I kept calling out to him but he gave little response. When asked if he was feeling ok, he shook his head. He seemed to be drifting away, with eyes half shut.

I went ahead to suction him. At least I thought that was the next logical thing to do. Within seconds of inserting the suction catheter, he threw up. On the bed. Loads of it. C broke the silence with his hysterical cries. I shouted for hubby and continued with the suctioning. Hubby scrambled for the toilet papers, threw loads of it to soak up the vomit and desperately doing his best to do damage control. So that was it. We spent the next hour clearing the mess and sent the boy to sleep at 11pm.

Wednesday

He slept through the night after a dose of paracetamol. Needed another dose at 7am and it went well for the day with just a low grade fever.

7.40pm... he cleared his throat incessantly.

8.15pm... he didn't seem to stop so I knew I had to help clear his throat. Brought him to the room and C gave me that same awkward look again. This time, with the new sheets and mattress protector, I didn't want to risk it. Placed him on a rubber mat before I proceeded with suctioning.

Nope I wasn't expecting what was to come (Note: last milk feed was almost 3 hours ago).

Suction. Vomit. Suction again (as I needed to clear the remaining vomit in his throat to reduce the risk of aspiration). Vomit again. O2 dropped to 90%. Suction again. Vomit again. O2 at 94% and not picking up. C cried and screamed. Refused to let me continue.

I was in a dilemma. Should I continue and risk inducing another vomit or call it a night.

So there he was, coughing, trying to clear his throat but failed. O2 was still not picking up. I guessed I needed one last suction (a swift one!) and I better do a good job. So the tug of war began. C fought hard. He sure didn't want another. In the end we had to do it by force. Flipped him to his side, daddy held him and I did my best to clear as much.

C is now asleep. O2 looks good at 98%. Fever came down on its own without medication. He is still at risk for aspiration. Shall see how he fares tomorrow.

White Flag

The thing about staying in Punggol is the huge amount of dust; tiny white specks that settle on countertops EVERY single day like icing on a cake except they do not delight and do not go well with my dark coloured furniture. And not to mention the sand particles that rendered my Magiclean useless as they are too dense to be picked up. Being dealt with such a situation everyday drives an OCD-me nuts. I am either drained from the extensive cleaning or drowned in frustration putting up with dirt.



1-day, 1-week and 2-weeks old filters

But the worst is its impact on the children's health. I find children in this area are more prone to fall sick, suffer from allergies etc. It is hard to ignore how much filth we pumped into our lungs everyday. C's bacterial filters for his BIPAP machine is a constant reminder. These filters meant to be changed every half yearly, I change them every week! The amount of dirt that accumulates is frightening given that he only uses his BIPAP in the night.

His bouts of illnesses for the past 2 months were probably aggravated by that. He had post nasal drip which caused him to choke and cough badly. He also had problems (still has) managing his secretions in the night while asleep. This combination was bad. It got to a point where he was coughing non-stop for hours. He was breathless and tired. It took a toll on his body as well. He had lost so much weight in a blink of an eye. His shoulders and knees crackle, his shoulder blades jutting out, I'm so afraid to move him around now, fearing I may break him.

His upper chest shrunk

Looking all boney and fragile

After 2 months of dealing with crappy days, I am totally exhausted. Last I checked (using a fitness band my hubby made me wear), I slept approximately 3 hours a day - 1.5hr deep sleep and 1.5hr light sleep. After that episode, I told him it's best not to keep track and I didn't need that to tell me the obvious.

So to sum it up... it has been a lousy period. Appointment after appointment for the next 2 weeks to follow. I hope I can keep up without collapsing.

Here's a throwback on C's PT session almost 1.5months back (yet another huge hurdle to get him back to shape):


 

Standing using a gaitor



What If Cayla Tested Positive?

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.

Be Free

We first met Kaelyn and family at their home in early February 2014.

Kaelyn was C first pal, a big sister and a fellow comrade in their fight against SMA.

We saw the children celebrate their birthdays, had gatherings at home and at events, celebrated Christmas together and fought infections in the same hospital ward bed to bed. I remembered how she persistently called out to C so she could see him from her bed. Little Kaelyn was vain too! Like any 3-year-old, she loved to get her nails painted, to wear pretty clothes looking her best. She was a late sleeper, C usually gone to la-la-land way before she did. She had always been the cheerful girl (last I remembered she didn't want to be called baby anymore) who's ever ready to show off her signature smile and blink blink eyes. Above all, she was a brave warrior princess who fought hard in all her battles with nasty bugs and monsters (maybe except for the purple dinosaur Barney which she so adores!)  =)

This loveable sweet pea earned her wings and is now in a better, happier place where she runs free.

Kaelyn, you brought joy and showed many what selflessness and love is all about. You came into our lives, gave us hope and brightened our paths. We are so honoured to have shared and built memories together for the past one year. Thank you little angel. You will be fondly remembered and loved always.

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!

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

Post Lunar New Year

Gong Hei Fatt Choy to all!

C made speedy recovery and went visiting with us this CNY. Visits were kept brief but purpose served - to reconnect with our families/relatives and to enjoy the festivity.

2015 has been good so far. The kids are relatively healthy and they get to spend more time together. Siblings rivalry is still strong, arguments between them rampant but both being older now means they back away from fights and give in more easily. That's an improvement.

Couple of months ago, we went into a state of worry when told that our girl was not performing well in school. The raise of this issue triggered off the red flag especially having taken a mental note of her inability to focus and other behavioural issues.

You see, we have 2 very special children in this household. They are direct opposites of each other in terms of physical abilities, temperament and learning abilities. These significant differences sometimes made it hard for us to disregard their differing pace in development.

Seeking help from a therapist has opened up my heart a little more and brought new perspectives. As the therapist had said, it's not all about academic achievements and having a child who is able to recite her alphabets and numbers (forth and backwards). What good does it do to have a child who is intelligent but fails to strive in a social environment? Or to kill a child's love for learning when pressured to conform to today's standards? It is important for parents to grasp that not all are built the same (there will be elites and there will be commoners). Setting boundaries/rules and having "punishments" in placed are a must to groom and guide a child but having done that, parents must come to understand that at the end of the day, whatever the outcome, your child needs to know that parents love them for who they are, it is ok for them to stumble and fall, to not live up to expectations and that they can go back to their parents for emotional support and acceptance. Building a relationship with your child is all that matters to ensure that they grow up as secured, confident, esteemed adults.

This got me thinking about C. When we were first expecting C, we spent a long time naming him. We wished for him to be knowledgeable, excels and performs better than his peers hence the name 闻越 was chosen. Indeed he grew up to be all that we asked for; an intelligent boy with a thirst for learning and advanced than most toddlers his age. If only we knew... then perhaps asking for good health would have been the wisest thing to do. It is only under circumstances as such, we parents get a reality check and come to realise that nothing beats a good healthy body. What would YOU ask for your child? Think hard and think twice.

Which is why our wishes for the year were kept simple - children to stay healthy, things to be smooth sailing and adults to take things in stride.

(Fast forward...)

Today is Rare Disease Day. This year, we celebrated the day with other special families at Bishan Park. Here are some of the photos taken:

Group photo of the families present

Hand-prints of Papa, Mama & Big C circled in photo

The Lam Family

Tomorrow will be another long day for us as we celebrate C second birthday. Stay tuned for more updates! Got to sleep now. Good night all.

Alamak!

For 3 weeks, we tried to keep C away from this bug at home. Cayla was the first to show symptoms i.e. occasional runny nose and cough. That went on for 2 weeks. First line of defence came down when Daddy fell ill. One week later, I conceded defeat. Our last line of defence was broken when C exhibited signs of choking few days back. Initially I thought he might have grown weaker over time thus the swallowing issues. So I had been monitoring him closely for other signs. None. No fever, no mucus, no coughing except after choking and he slept fairly well with a slightly lower O2 and higher pulse rate (still within acceptable healthy range).

Until Dr Chong came by yesterday, did a quick check on C. Suspected that C might be having a mild flu with no flowing mucus to hint that he's actually having one. Backflow of the mucus could likely have caused the recent 'choking and coughing' incidents.

This morning C was significantly weaker and lethargic. Last I checked he was running a fever. I can foresee that this will be a stay-home Chinese New Year. Hope C will get well soon for his birthday celebration in March.

Pay It Forward

We made a pledge to offer packed meals for the elderly during our Indiegogo crowd funding campaign. With Lunar New Year round the corner, it's about time we work on that promise.

We were linked up with St. Andrew's Cathedral Home for the Aged about 2 weeks ago. Our initial intention was to provide packed meals but the Home needed help with their weekly groceries so we thought might as well go with what they wanted since we had already set aside the budget for this.

Hubby was given a list of (ahem) 25 items to purchase. 

 

1) Chinese sausage x 4pkts

2) Yam x 4nos

3) Pumpkin x 4nos

4) Turnip x 4nos

5) Bitter gourd x 6nos

6) Eggplants x 8nos

7) Long beans x 2kg

8) Green leafy vegetables x 2kg 

9) Tofu x 10pks

10) Cabbage x 4nos

11) Sambal belachan x 3bots

12) Pineapple x 6nos

13) Ginger x 3kg

14) Tomato x 1kg

15) Chilli padi x 200g

16) Dragonfruit x 15nos

17) Chicken sausage x 8pkts

18) Herbal packet for soup x 10pkts

19) Dried longans x 4pkts

20) Potatoes x 5kg 

21) White fungus x 3pkts

22) Broccoli x 2kg

23) Arrowhead x 2kg

24) Small limes x 2kg

25) Garlic x 3kg

Hubby roped in buddy to help with the logistics. So off they went with the entrusted list this morning (honestly I was a little worried whether these 2 men could do proper marketing lolx). I shared this list for only one purpose - to commend Hubby and Jason for their efforts 'cos the picture below didn't do justice in showing the sheer amount of food these 2 men carried. Hubby said both of them made 3 trips (walking and carrying these food) from wet market to car and 2 trips from car to the Home just because they had to park far away.

 

Anyway the food was delivered along with a red packet so they could purchase the Four Season Lime plants which they wanted but we couldn't manage logistically. Overall I must say it's a wonderful job done!

New Hopes for 2015

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 naming his vegetables
• 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.