Cereals-ly…

We started seeing Aunty T about 4 weeks ago and since then, we saw great improvements in KR’s oral motor development. We persisted with the facial and oral massages daily for the past month and KR started making more ‘up down’ movements with his jaws as well as showing more coordinated movements with his tongue. With these positive developments, Aunty T progressed with cereal feeding via the spoon! I remembered sitting there stunned as Aunty T started the first teaspoon! Is this for real? Like cereals-ly!!! As the teaspoon landed firmly on his tongue, KR lapped and drew them all in! He swallowed. A little came up to the nose through the open palate and of course by the 5th teaspoon, this little guy needed the usual cajoling til he 10 mini teaspoons. KR had his first oral feed after 7mths. My heart was so thankful to Jesus! One day closer to removing the NGtube.

‘One day closer’. Dr A used to tell me that every day when I visited KR at the NICU (after his colostomy surgery) and always bugged them when they were going to discharge him. As KR improved, he would comfort me and say, “mummy, today we are one day closer.”

It’s indefinite when KR is going to finish a bowl or cereal on his own and have the NGTUbe removed totally. But I dare say we are One day closer.

Dear Lord, I am so thankful for the work You are doing in KR’s life. Thank you for helping KR overcome all the facial and oral massages he once detested. Thank you for helping him gain some competencies in the oral movements. I am so thankful. Today we pray that KR will taste of the food that you have made for man and enjoy every single one of them that’s being introduced to him. Wet his appetite towards food and let him savour the varieties and feast on them. We pray for his palate to be able to accept the sweet, bland, sour, bitter, sharp and robust tastes of food. Let him accept them well and reject none of them. In Jesus’ name we pray for good control and coordination of the tongue and jaw movement. Let his eating be effortless, efficient and enjoyable. In Jesus’ victorious name I pray, amen. 

You talk, I talk, who listens?

They talk when they walk

They talk til they fought

They talk when they are eating

They talk when neither’s listening

They talk the moment they wake

They talk til their head rests on their bed

Basically, they talk and talk and talk and talk…

Little ones, learn to take turns, learn to pause (Erm… for a while?), learn to listen.
Not just to each other, the world but importantly, to God

So that you’ll know the wise things to do in life or not

Be quick to listen, slow to speak and slow to anger.

Just like our God. That’s my prayer.

Amen 😉

BFF. Kopi Talk. Wait a min. Where’s the Kopi? 

 

BEE-loveds

And so, the Jie jie had a new pair of shades. She so thinks Di di enjoys playing ‘Dressing Barbie’ with her. And I so think it’s very cute! 🙂 

I think that’s one of the biggest perks for staying home with the kids. You get to capture every beautiful Kodak moments. The angry, the sad, the happy…. the cute. So precious.

These beloveds are growing way too fast. Has it been 3yrs for the Jie jie and 7mths for Di di? Where did all the time go? I am thankful for the privilege to be a stay home mama and have all the time in the world to spend with these little ones. Won’t wanna trade it for anything else in the world, neither taking this stewardship for granted. Thank you, Jesus for these precious bubs. Teach me to grow them well and grow well with them. *Grateful*

What’s so good about the Friday?

Good Friday is the day we commemorate the death of Jesus. How can we call it good when someone has died? Someone suffered the whipping, the crown of thorns, the ridicule and …the cross? The most inhumane and painful form of death penalty set for anyone – the crucifixion.

When I was still in teaching, I loved to greet my colleagues “Good Morning!” And flash them the million megabyte smile. Most of my colleagues will reply cordially but there is one who will always snuff out my friendly gesture with,

  “What’s so good about the morning?” 

I remembered replying often to this curt remark, “…the morning is good cos Jesus loves you!”

Indeed, this Friday is good because Jesus loves us. Two thousand years ago, it was on this very day that the redemptive purpose of the Lord was being fulfilled. We are no longer condemned for the curse of sin set out for us. Jesus’ sacrifice made grace and the abundant life available. This grace is free but it’s not cheap. It cost the life of the darling of heaven.

This Good Friday and Easter weekend were exceptionally memorable cos KR went through the PSARP. When I saw how his little hand was poked 6 times to get the wonky IV plug reset, how he wailed at poke and crying his lungs out for his mama to save him from the pain, I cried helplessly. I wish I could save my little darling from the torment of the needles but I know its very necessary and there is no other way. The plug had to be reset cos the kind of anti-biotic given to him was through the IV and when I asked if there is a comparable that could be given via orally? The answer was, no. 😦

Over the Easter weekends, the phlebotomists were off duty and I was totally not comfortable with letting a young medical officer (from the surgical team), who had zero experience with setting an IV plug, do it for KR. After checking in with the nurses in the High Dependency ward, we found the next best alternative. A registrar from the medical team. It still took 6 pokes, nonetheless, cos this boy had so many of his veins scarred from the previous plugs set. The brutal witness of pinning my son down for them to find the right vein still etches deeply in my mind. Each time I see the scarred hands and feet, the scene replays.

KR’s painful event led me to contemplate about Jesus’ sacrifice. I can’t help but to marvel at the magnanimity of God to give us Jesus for our sins. Which parent in the world would do that? To give his child for the life of another? Oh! The brokenness of God when He had no choice but to place His Son at the cross to save us, who can fathom? This grace is ridiculous, out of the world and incomprehensible. In awe, I can only but say, thank you Jesus.

Worthy is the Lamb!

For this is how God loved the world: He gave his one and only Son, so that everyone who believes in him will not perish but have eternal life. John 3:16 (NLT)

KR’s Posterior Saggital Anerectoplasty 

The past week had been difficult for me. I get teary each time I think about KR going for this surgery. Also known as the ‘Pull Through’, the surgeon would need to slit KR’s back, detach the rectum from the muscles (internally) and pull it down to connect with the newly created anus. I prayed for a miracle. I asked the Lord, the one who can do it all; the God of the impossibles, to heal him. But over the week as I prayed, I knew in my heart, God isn’t going to heal him the way I would imagine him to. The Lord prepared me for today.

First, the Lord reminded me of the time when I was a caregiver to my brother who suffered Bipolar. There was a period of time when I felt very burdened and stressed. I prayed for the Lord to deliver me out of the situation, daily. More often than not, I would cry to bed and literally asked Jesus to ‘save me’, but the Lord did not. During one Sunday service, I saw in a vision that I was drowning and while bobbing up and down in the gushing rivers, I cried out to the Lord, ‘Save me and get me out of this!!” The Lord was silent in the vision but what I saw there after brought me great comfort. His hand stretched down from heaven and held on to mine as I struggled in the river with ferocious waters splapping me in every directions. Even though the Lord did not pull me out of it, He journeyed with me. His word for me then, was He will be with me! 

My heart was even more ladened (though at peace), when my sis shared with me the bible story of Daniel’s friends being placed in the furnace. They were not delivered from the situation but neither were they being delivered into the hands of the situation. We all knew they came out of the furnace, unharmed. I believe this incidental sharing of the story was God’s intentional reminder that He will be with us! Indeed.

Second, one of my church pastor shared his journey as a cancer patient on the FB just the night before KR’s pre-admission to the hospital. There were several pointers that he shared. 2 really helped me in my understanding of why things went the way they were and 1 pointer reassured me of what He had spoken to me before.

Pointer 1. “Healing comes in many forms and we should not box God in just one that we are familiar or is convenient.”

Pointer 2. “We must always measure up our experience to the Word of God and not the other way round.”

Pointer 3. “In the end, God will turn all that we are going through for the good because He is always our good Father.”

When I first found out that KR has cleft, Genesis 20:50 was the anchor verse that I will claim and pray over him, often. God’s  intention for him is always good, in time to come, the situation will be turned around and many will be saved. Though, humanly I can’t understand now, I cling on to what I know of Him to see me through each painful phase.

God? He is a good God and He loves us deeply.

Third, over Sunday’s service, our senior pastor preached about being a Faith Possessor; speaking to our mountains in life to move and to believe that it will happen. Throughout the past 6 months, there are many recurring reminders through different people and via various platforms that God will bring about the good in KR’s life. Now the challenge is to truly believe that God will turn it around for him. Because for all things, God work for the good of those who loves Him. This phase is transient.

The song, You are Faithful ministered to me a great deal this week. Indeed, our God cares for us and He will carry us through.

Faithful God and my sovereign King, in YOU, I place my trust.

The life of my Son and the destiny He has in you. Amen.

With papa while mama pumps milk.
Oh my, mama… is that my last feed?
Super hungry by evening 😦 Thank God I still have my fingers to lick.
Looking good without NGTube and Nasal Stent

World AG Congress 2017

Evangelist Nathan Morris preached that night. Even before he started, I could sensed the presence of God so evidently strong in the sanctuary. The Lord was in the house. Tears streamed down my face as I worshiped the Lord. It was such a precious moment for me cos ever since the children came along, worship with just Abba God and me is hard to come by.

I decided to go for the rally after watching one of the publicity during Church Service, a few Sundays ago. A few things that the Lord spoke to me before attending the service:

  1. Stand in proxy for KR
  2. The woman with the issue of blood

The Evangelist preached from the story of Moses being given away in a basket to escape Pharoah’s ruthless order – to kill all the Hebrew baby boys.  He went on to speak about how God hid Moses from the devil’s eyes. We all thought Moses was done for, just like the many other Hebrew baby boys. But the Lord had  another plan for him. God allowed Moses to be nurtured in the house of Phoroah (in the house of the man who wanted to kill him) and later, told him to deliver Israel out of Egypt.

God had him (Moses) in His thoughts and in His plans all along. Nathan Morris

When I first found out that KR has Cleft Lips and Palate during my 5th month scan. I was devastated. Romans 8:28 did not comfort me at all. How can it be for good if the Lord has known that I love Him? How could He have given me a son with cleft when I serve and love Him so faithfully? The Lord is good and indeed good always, He brought Genesis 50:20 to me over and over again in the course of the past 6 months to remind me of KR’s destiny in Him. I take great comfort knowing that KR is in God’s plans and thoughts right from the beginning.

When the Evangelist opened the altar for prayers, I hesitated to go cos it was just too crowded. However, in the end I went cos I remembered what the Lord spoke to me before I attended the rally. I pressed into the altar cos like the woman with the issue of blood, I just wanted to touch the cloak of Jesus. I just wanted to meet with God. Nothing supernatural took place but I stood there, in proxy for my son, immersed in the presence of God and was at peace. Thank you, Jesus.

Cupcakes for Bingo!

The Chiam family flew in from Canada and a dinner was set at my parents’ in laws’ place that night. KX, as usual, was excited to go to the grandparents’ house cos her favourite little fluff ball was there. We were all getting dressed when KX insisted on wearing a dress. This was nothing unusual until she chose a dress that had cupcake prints on them.

Me: Why do you want to wear this, KX?

KX: So that, Bingo will lick me, mummy!

I found it so cute that she would want to wear a dress to impress Bingo. She wanted the silky terrier to go near to her. Of course when Bingo din lick her, KX asked why.

Me: Cos you are not wearing one with bone prints, KX. Dogs like to gnaw on bones not cupcakes.

KX: But I like cupcakes, Mummy.

Me: But you are not a dog and Bingo is not you. You guys just like different things. What you like may not be what he fancies and neither his for you.

KX was quiet for a while when she went, “Why mummy?” She is just at the ‘Why’ stage and there are many of her questions which I thought I have answered them quite adequately but she is still punctuating her comments with the insatiable , “Why”. Can somebody tell me WHY?

And so, I decided to google. Chanced upon a write up on “Why Children ask Why?” and I found something interesting which I took away.

…what they really mean is, “That’s interesting to me. Let’s talk about that together. Tell me more, please?” When I’ve connected with children and begun to spin a tale to answer this question, they’ve sat enthralled…”

Shall teach her a new way of communicating. It should be ‘Tell me more, mummy..”

Fruitfulness 

“…that you may be filled with the knowledge of his will in all spiritual wisdom and understanding, so as to walk in a manner worthy of the Lord, fully pleasing to him: bearing fruit in every good work and increasing in the knowledge of God; being strengthened with all power, according to his glorious might, for all endurance and patience with joy; ” Colossians 1:9-11

As we drive into our car park, we will be greeted by a row of fruit trees. They all look alike in terms of height and size but there was one which caught my attention because of the numerous fruits hung on it. How can this jackfruit tree be so fruitful? This tree stood out amongst the rest in the same vicinity. Not because of it’s physical appearance (cos all the other trees look green and healthy too) but it was the number of fruits it bore. I looked at the tree and I told God, I want my children to be as such – fruitful! That, they will grow in spiritual wisdom, knowing their destiny in Christ; walk confidently and faithfully in it. And be fruitful! Amen. 

Radio Flyer

After much contemplation and research, we decided to get KX a second hand radio flyer from Carousell. This bike hits the 3Ps in selecting a tricycle for a 3yr old. 

It’s easy to Paddle.

It’s pretty.

It’s pink! 

We know it’s THE choice when KX went, “I love it, mummy!” and grinned from ear to ear. 

It’s her second day having this chic baby home and the cutest thing she said was she wanted to bring Monk Monk out for a ride on it. 

KX took a pic of it this afternoon. The interesting thing I observed was her laying out 3 pairs of shoes perpendicular to it. 

Me: Why did you lay out your shoes like that KX? 

KX: cos my bike is pink, mummy. 

Me: but not all the shoes are pink? 

KX: (rethinking) I mean the bike is pink and white.

Me: then why the red shoes, KX? 

KX: (rethinking) oh! There are red dots on the wheels (referring to the axle). 

Me: I see! So, you wanted to match the shoes to the Colours of your bike. Pink, white and red? 

KX: Yes, mummy! Match the colours. 

Today, we learnt about being specific. 🙂 

Fitting in a Nasal Stent 

#throwback to the post, ‘God will make a way’, the disappointment I was about to face, then, was KR’s inability to have a nasal stent fit securely into his nose because of his NGtube. However, God is faithful and indeed HE made it possible. 🙂

With God’s wisdom, I suggested to the Nurses having just half a stent. Of course, then, the challenge would be, how to keep half a stent fit in securely? Even with two flaps, its difficult to keep the nasal stent in. The tall order is never too tough for God since His word for me was “rivers in the desert will I see…”. We came home with half a stent and the Nurses first tried version 1.0 on him.

This version did not last long as the Hyperfix came off soon after we stepped out of the clinic. 😦

I tried a few other versions before I finally came to the following,


I thank God for His wisdom and how that helped us solved nearly the impossible. KR still managed to have a stent put in!!!! Thank you Jesus!

If you need some reference on Nasal Stent fitting, hope the video below, gives you some inspiration. Every child is different and there is no one fixed way of taping hence this video truly serves as a form of reference and not a solution.

Cutting of the Tape:


Fitting in the Nasal Stent:

 A neater cut would probably snips 2 little triangles off the ‘nose tape’ instead of just slitting 2 small slits. This makes the tape test even much nicer on the nose. Just like those beauty nose pads for removal of blackheads.