What to do?

Crossroads are terrible positions to be at. Not unless you know exactly where you want to go. Have you ever drive and felt lost? Should it be a right turn, left? What’s worse when there is no navigation signs.

KR’s persistent haziness in his left lung made the respiratory team in KKH suggest to do a CT scan. Nobody was sure about the cause but the suspicion was a diaphragmatic hernia.

My dilemma for not putting my Son through the CT scan was partly because of the radiation. KR has never needed any oxygen support ever since he recovered from his aspiration pneumonia episode last Christmas. Not after the major ops and neither in his day to day. Why would there be a Hernia? I find this hard to believe and hence making it harder for me to agree to the CT scan.

I prayed. And I asked my prayer team  to pray with me.

I did not want to make hasty decision of putting my Son through a scan just because a doctor said so. I wanted to consider well and to pray through to Ensure it’s a well thought and prayed through move.

During the wait, the Lord spoke to my fears through a friend’s FB post on “What if the Worst Happens?” 

He confirmed the benefits of seeing KR through the scan through 3 Doctors’ opinions.

He reassured me through the book of Judges chapter 6 – The Lord is with us. Just as he is with the Israelites and with Gideon.

The Lord is very good to us. The hospital gave us an earlier date for the scan but my heart was not ready to put KR through it. On the day of the scan, KR had stuffy nose and I had to reschedule it. The stuffy nose lasted no more than a day but from then til the rescheduled date in August, the Lord spoke and it is well with our soul to go through the CT scan and we know the Lord will be with us. Amen.

Rejoice in the Routines

The weaning off NGTUbe journey has been a roller coaster ride the past couple of weeks. It could be 3 tablespoons in one setting  and not even a mouthful the next. We went back to no introduction of new food and simply runny cereal, of which, KR doesn’t even fancy at times, now. Feeding him can be very draining.

Interestingly this week, thrice I was asked to think about having a G-tube for KR.

One was suggested by a nurse I met in CCRC, second, the physiotherapist and third, the speech therapist. Both therapists think KR will probably have another year to go before he could wean off the NGtube successfully. That would mean, we can only start considering his palate repair when he turns 2, should he still have the NGTube. This disheartening news made me draw an email to discuss the possibility of doing the G-tube surgery during the colostomy closure surgery, with Dr Yap.

Hard as I tried, I can’t rid the thought of having him open another hole after closing one for his next surgery.

Will I be making the right decision? It’s another slit, stich and scar. What if his G-tube gets infected, like some of the online stories I read? What if, there are granulomas that needed to be burn off? What if the tube leaks and leaks?

What IF?

And so why am I so bothered about him getting his palate repaired later?

Cos that would affect his speech development later. 

And so what if he speaks later or never get to speak?

Then, how would we communicate? How could he be integrated socially? 

I took a long and dreary walk through my brooding chamber. I did not walk out any clearer until…

Weigh the risks and benefits. Do the benefits outweigh the risks?

This nugget of wisdom helped us made some very difficult decisions whenever Sweetheart and I are stuck at crossroads with rgd to KR’s medical interventions.

With the G-tube, it would also means it takes the stress of me keep trying to feed him and also for KR to slowly pace himself to learn to eat. We could then work on the other areas which still need to be worked on, his physiotherapies and also speech.

Today, I did some changes to KR’s feeding schedule and sneaked him out to Orchard road. It was a great feeling putting him in my Manduca and ‘koala’ him around to run errands and pick KX from school. In the evening, I brought both kids out to pick sweetheart from work.

Before KR, we never had a helper. KX followed me everywhere I went and did everything with me. I miss this same bonding with KR a lot. To do the frivolous and carefree; the routines and the mundanes.

Because KR had so many meals to feed a day, it was hard bringing him out. Today’s little outing brought me great joy.


This photo was taken after KX had her tea. Usually, KR will sit in this high chair and we will practise rusk eating. Today, is just fooling around and photo takings. I lurve it!

The rehearsals

“Would u like to be Uncle L’s and Aunty C’s flower girl for their wedding? And the following week for Uncle S and Aunty J?

Very quickly, KX replied, “I want.”

The big days came and KX went from being an amateur to a veteran in the two weddings. We were so, so proud of her. Confident, cooperative and no stage frights. She executed her task with grace and excellence 🙂

As my little girl walked down the aisle, I can’t help but to think about her own big day.

As we often heard, “The days are long but the years are short!”

Has it already been 4? Soon it’s gonna be 12, 16, 21 …. and  someone’s beautiful Mrs.

These rehearsals made me rehearse how I would respond on HER big day. I remembered a year ago, someone shared this YouTube with me and I thought it would be a beautiful song to sing for my baby on her wedding day.

This bitter sweet music kinda brings out a mother’s emotional turmoil of mixed feelings as she watches her baby girl grows. The lyrics doesn’t fully expressed who KX is, esp the part on her ‘never sleeping through’, cos she was sleep trained by 5mths and slept through by then. However, I totally agree about being her ‘biggest fan’ and secretly always wishing for sweet moments to come to a standstill. But I know time never returns. So I guess, I just need to savour every moment with my little ones and count each day a blessing as I get to watch them grow.

Here’s to you

You were pink or blue

And everything I wanted

Here’s to you

Never sleeping through

From midnight till the morning

Had to crawl before you walked

Before you ran

Before I knew it

You were trying to free your fingers from my hand

‘Cause you could it on your own now somehow
Slow down

Won’t you stay here a minute more

I know you want to walk through the door

But it’s all too fast

Let’s make it last a little while

I pointed to the sky and now you wanna fly

I am your biggest fan

I hope you know I am

But do you think you can somehow

Slow down
Here’s to you

Every missing tooth

Every bedtime story

Here’s to Barbie cars, light saber wars

Sleeping in on Sunday

Had to crawl

Before you walked

Before you ran

Before I knew it

You were teaching me

The only thing love can

Hold hands through it

When it’s scary, you’ve got me
Slow down

Won’t you stay here a minute more

I know you want to walk through the door

But it’s all too fast

Let’s make it last a little while

I pointed to the sky and now you wanna fly

I am your biggest fan

I hope you know I am

But do you think you can somehow

Slow down
Please don’t roll your eyes at me

I know I’m embarrassing

But someday you’ll understand

You’ll hold a little hand

Ask them if they can
Oh oh ho oooh

‘Cause it’s all too fast

Oh oh ho oooh
I am your biggest fan

I hope you know I am

But do you think you can

Somehow

Slow down

Slow down

Meeting Death

We chanced upon Death today while playing at the playground. Death took away this baby female olive backed sunbird (thankful to Aunty En En who helped us to identify the dead).

KX and I looked on at the carcass and was wondering if that is the best place to die – in the middle of a playground. After some discussion about how the children will run over it a zillion time (unknowingly, of course) or the rats or cats who scavenge for food around the neighbourhood might just do it greater injustice, I made KX fetch me 2 leaves.

Carefully, we gathered the small body on the leaves and transported it to a shade under a big tree.

After we undertook the dead, I thought it might be a good time to address the concept of “death” with KX.

It is appointed for men to die once and after that comes judgement. Heb 9:27

I do not expect the 3 and a half to fully comprehend death but I just want to use the opportunity to bridge to her the topic on ‘Eternity’ as well.  If we do not know Eternity, death will hold us down. But, knowing eternity, gives us hope and with it, we will meet again.

.Hope.

My First Grab 

When my helper threw away KR’s first size 4 stent, I took a deep breath GRAB hold of myself and tried very very hard not to flare up. It’s a similar frustration to that of a child spilling his drinks or made a mistake which you have warned multiple times.

How can anyone be angry when you see a person apologising profusely in guilt? I can’t. And boy, am I glad she found some relief when I said, “nevermind.. it’s ok.”

I guess practice makes perfect. The uncountable times of saying, “nevermind.. it’s ok.” to KX has trained me to say likewise to my helper when she threw away the $200 (approx) Stent without asking me. She assumed that if the feeler has torn, the stent cannot be used.

Needless to say, after we bought our second size 4 Stent, she never dared to remove the tapings from the stent, afraid she would tear the feeler off again. We were both very cautious this time round in the way we removed the tapes from the stent before washing and also the way we handled it. However, this no. 2’s feeler gave way too!!!

I was very reluctant to purchase another one and decided to post on the support group’s FB Page to ask if anyone has any ingenious ideas on salvaging this broken feeler. A nurse in CCRC suggested taping it with tagaderm but the flimsy tape doesn’t stay well on silicone and also its flimsiness makes it really hard to handle on something so small. She then suggested superglue when I called to check on the availability of the stock. (I was really about to head down to KKH to buy it). I did not feel very comfortable with the use of it cos I would think the smell would stay even if I were to air it for a day, as suggested. Moreover, I wasn’t quite sure if the glue might melt the silicone away more than it gels it?

The clueless me decided to give FB a check again to see if any parents from the cleft support group have made any suggestion. And that’s when I saw the message from Dip** that says she has passed her size 4 to Jer** and Jer** no longer uses it for her son. WOW! Providence to the max!

After a chat, Jer** taught me how to call for a GrabCar to have the stents delivered to me. It was my first time using the app and I was quite intrigued by how flawless the whole system is. Impressive. 

The stents arrived and I was at first disappointed to see a small tear on the feeler. But I rebounded in split seconds when I saw my box of sewing kit on the dining table. I had wanted to stitch my stent in the morning when I was cracking my brain over it. However, I was afraid that if I were to stitch through, the silicone might crack further.

With the extra stents that Jer** gave me, I GRABbed hold of the needle and thread and started stitching on the right side of the feeler. And I was thrilled to see how well the stitches work on the silicone!!!!

I went on to repair the stent Jer** sent me and *tadah! As good as new.

I would like to GRAB this opportunity to thank Dip** for linking me up with Jer** and Jer** for educating me on GrabTaxi! And making the effort to pass me the stents. Very grateful!! More so, thankful for the new friendships forged.

And now, time to GRAB some supper !

Playground Etiquette 

A couple of months back, we were pleasantly welcomed to the playground, just below our block, by 2 Caucasian kids. 

The 5 yr old automatically said “Hi there, good morning!” As she saw KX walked into the playground. Her 3 yr old sister followed suit. I was impressed. Very. 

Immediately, I told KX, (who at that point, totally did not know how to respond to such level of friendliness) to acknowledge and say ‘hi, my name is KX. What’s yours?’ 

I felt that KX had made 2 friends that day though there were not much chemistry amongst the 3 girls and they went on their individual play after the amiable greet. But, that’s at least a good start to building new friendships, learning the concepts of ‘playing together’ and ’embracing inclusiveness’. Since that day, I tried to make it a point to have KX greet new friends who walk into the playground and of course, I did too, with their mothers. 

On a separate occasion, last Saturday, KX requested to play at the playground in Clementi Mall. As she entered into a pool of multi-cultural nationalities, everyone just minded their own play. Parents with older kids were looking at their phones while those with younger kids just looked at their own. Should it be this way? Was it aloofness? What happened to the kampong spirit where everyone lives with an ‘open door’ concept and when people are not so individualistic? Hmmm…

KX went down the slide a few times while fixing her eyes on the see-saw. Rostick and Polina (siblings) were bouncing and jumping off the sea-saw, treating it like a jumping board.  My conservative asian decided to just wait til they were no longer playing before she went near the sea- saw. I waited with her. 

After several minutes of wait, Our two French friends rested with their mama by the side and KX looked at me. 

“Come, let’s go to the see-saw!” I led her. 

Excitedly, KX skipped along and just before she could occupy one seat, Polina raced to the other handle attempting to stand. It was at this point that I decided to step in and model for KX what could be done. 

“Would you like to play see-saw with her?” 

Polina nodded shyly as she gently took her seat. 

The two girls, rode happily til KX wanted to play something else. As usual, KX thanked Polina for playing with her and she ran along. 

Later on, KX returned to the see-saw and Zani ran towards the same seat. KX looked at me. I modelled for KX again.  

“Would you like to play see-saw with her?” 

Zani enthusiastically swept his superman cape away and sat to rock on his stallion. Just minutes into the play, the Burmese boy confidently asked KX if she would like to play ‘catch’ with him. After getting my permission, the two kids played chase. It was at this point when all other activities at the playground took a standstill and the rest of the kids looked on with envy. 

What better way to teach a child, ‘inclusiveness’ than to model it for her? 

“Would u like to play ‘Catch’ too? Rostick and Polina came close immediately. Just before I was about to appoint the ‘catcher’, a 2.5yr old made a quick dash to join in the circle. Since Garvin was the youngest amongst the 5 of them, he was appointed the ‘catcher’. The little Indian boy took everyone by surprise as he managed to catch all except for Rostick, who was 3 times older. 

The children took turns to chase and catch and the playground was soon filled with screams and laughters. The play opened the doors of the children’s hearts to embrace one another, regardless of race or religion. It tore away the invisible boundaries that were subconciously drawn up in our selfish world today. 

The mothers greet one another goodbye and so did the children. Zani’s Mother gave KX one of his MacDonalds balloon and KX was happy. 

Hi, my name is … would u like to play…. thank you for playing with me… 

Tango with me, Mummy

In order to have KR’s palate surgery done, the NGtube has to go and for that to happen, this boy has to really work on his swallowing so that he can start taking sufficient feeds orally. It’s been 1.5 months since we started seeing Aunty T and we have seen marked improvements in the short span of 6 weeks. 

KR used to be very defensive whenever we wanted to do facial massages for him. He would either cry or turn his face away. Now, we have progressed to doing it before every meal with an addition of oral massage as well, to stimulate his oral cavities. We had also moved on to having him sucked on my finger that’s dipped with milk while we tube fed him. Aunty T and the SLT in KKH were very impressed with his improvements as he moved on quickly to runny cereal fed by the spoonfuls. 

However, just when we wanted to move on to doing the videofluroscopy in week 6 of seeing the private therapist, KR refused to eat the prepared porridge during his session with Aunty T in week 5. *cries* Aunty T later advised that KR was trying to tell us that we are moving way too fast for him. 

Slow down mama, slow down…

We made some improvements over the next two weeks and then KR again, went into some form of food refusal. Feeding him a tablespoon of runny cereal for 20mins soon took a toll on me. At some feeds, I found myself being impatient and kept wanting to feed him the next spoonful before he even managed the previous. There were also times when I decided not to even try cos I felt very tired kneeling before his baby rocker, holding a teaspoon with one hand, a bowl in the other, multi-tasking to pump milk as well as having quick thinking to put down the food in order to stop his nimble hands from trying to pull off his NGTube or to keep his hands occupied so that I can find the opportunity to put in the next spoonful. Not to mention, the singing and cajoling in between spoons to get him to stay focus on eating. Feeding became a chore on some days. Exceptionally dreary when he refused to even open his mouth; when he would instantaneously turn his face away, cringe and cry when the spoon approaches. 

Aunty T advised to move back to just cereal and stop the porridge. At this point, I was discouraged and began to feel anxious.

When will I be able to remove the NGtube for him? 

When can he go for his palate repair? 

Why does he need to struggle with eating? 

Why must it be so effortful for my baby to learn to swallow? 

Shouldn’t it be natural to want to eat and enjoy food? 

The list of whys, shouldn’t it be went on as melancholy swept over me. 

During each feed, I would try to also video the process and have Aunty T review it. She will then let me know how I could work on the feeding with him. One day, I sent her a video showing how cranky KR was during the feed and I had to resort to bringing out the “forbidden” toys and cajoled him like what an Ipad would do in order to get him to eat. 

I failed… 😦

 I sent that text together with the video to Aunty T and she called me soon after watching it.

….tango with him…

Her call encouraged me as she affirmed me of what I have been doing with KR and explained to me how common food refusal is for babies/children who has NGtube/ Gtubes. I especially liked her piece of advice when she told me to “tango with him”. If I may interpret, move on as he moves, retreat as he does… treat this swallowing therapy like a dance. Enjoy every move and sway along with the music. It should be lighthearted and enjoyable. No competition, no fight against time… 

After that day and some good time with God, I got the group of prayer warriors to pray for KR’s swallowing and eating. I woke up the next day feeling recharged and ready to help him overcome this feeding difficulty. With a clearer mind, I reworked on his feeding schedule, the amount of milk to give and also the choice of semi solids to feed him. There were days when it’s good and of course, there were also days which were tough but what’s different this time round was my mindset. It’s about having a “tango with him”. It has been enjoyable… 🙂 

It will only get better, KR. Mama will work hard together with you. You are not alone. 

Thankful for you, Aunty T. 

Influenza B

It was a tough fight with Influenza B the whole of last week. It threw its punches at us relentlessly and we were caught off guard! We could not take any supplements to ward off this evil! It came fast and fury, KX and I were both hit hard. 

KX ran a fever of up to 40.4 and my body aches left me nearly paralysed. I could barely do anything (though I still did, it was literally pushing my own boundaries and limits) and our noses were all choked up with thick sticky mucous that left us panting easily. We were miserable! Amidst fighting the flu bug, I had to do cluster pumping just to increase my milk supply. I think I was a bit tat depressed. 

KX and I were masked up nearly 24/7 to keep our loved ones free from the Influenza. Boy, were we glad that we had it very much contained and KR, sweetheart and Aunty S., our helper, were spared from this ruthless attack.


KX’s fever did not go down til day 7 and at day 5, after complaining about some gastro discomfort, we were back at the GP. This time, we had to do a swab test for her to ascertain the cause. We were actually thankful to find a faint red line that grew below the control line on the stick. Influenza B confirmed! KX had fever til day 7 and mine was broken on day 5 of the influenza. We both did not take antibiotics and I thought that was a good thing cos I have a personal belief that if the body could produce its own antibodies to fight off the influenza, it’s the best! 

We found drinking fresh coconut water refreshing and hydrating. Importantly, cos coconut water is diuretic, it helps us passed out the virus quicker. Very thankful for the availability of Cocoloco through RedMart delivery. 

We drank lots of chicken soup these 2 weeks and KX even made her maiden Mee Hoon Kueh while running a 38.5. Well I Guess if we can’t chase the flu bug away, we could do something fun to chase the blues away. 


Throughout this ordeal, I was actually very thankful that I caught the same bug as KX cos that would means that my body will produce some good passive antibodies for KR through the breastmilk. God just has his wonderful ways of protecting the little ones. 

Mothers’ Day

When KR was about to enter the operating theatre during the PSARP, a verse in Isaiah spoke to me. 

As a Mother comforts her child, so I will comfort you… Isaiah 66:13 

I was carrying KR in my arms and trying to rock him to sleep as calmly as I can before handing him over to the Anaesthetist. 

Sniff. Sniff. .sshhhhh shhh 

The imagery of the Lord cradling me in His arms and comforting me as I comfort KR, momentarily displaced my pains. 

It’s Mothers’ Day today. This same verse was preached during service. It was a message to caregivers, especially to mothers who are always carrying a burden. 

Even to your old age and gray hairs  I am he, I am he who will sustain you.I have made you and I will carry you. I will sustain you and I will rescue you.  Isaiah 46:4 

Even when I grow old, the Lord will sustain me, carry me and rescue me! Wow! This blew my mind when I read the verse again and again. The human body is so limited. If I can, I would love to be caring for my children even to their white hair and old age. But is that possible? I would possibly be in the grave by the time they are well advanced in age. I can’t possibly still do what I am doing for them now, then. 

Especially KR, I am constantly worrying. Is he breathing well? How is he recovering from the ops? When can he eat and poop like the normal children? … as he grows, I believe I will start worrying if he could learn well, can he take care of himself? … the list goes on and is endless. 

As a Mother, I wish to carry my child even to his old age but I know it’s impossible! This verse tells us that God is able and is willing to do that. If I love my children this much, the Lord loves them even more and He will take care of them. 

The speaker continued to preached for Isaiah 49:15. 

“Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!

Such a liberating scripture. If I could rephrase the verse, it means the Lord will remember, us (as mothers) and our children. 

If you are a mama and like me, you are constantly worrying for your babies. Take delight to know that there is someone greater out there, more capable than you are, one who live in everlasting. He, will carry us through. Blessed Mothers’ Day.