Our Mount Everest

It’s near CNY and everyone was wondering if we would get to go home and spend it with the family. The doctor’s criteria for KR to go home was that he must take at least 950ml of fluid per day. Prior to the admission, KR was only drinking 500ml. On very good days, 800ml. 950ml was a tall order, it’s an Everest we have never scaled.

“After an op, fluid management is very important to ensure proper wound healing takes place.” And so this was what we were advised.

In the hospital, KR could barely drink any. The environment, the discomfort from the post-op, the lethargy and frustration built up from the one week stay … these accumulations were huge road blocks.

Much as I hated the idea of giving him an NGTUbe, I knew it’s the ONLY way we could go home the soonest to nurse; it was like the ‘key’ to being released from the ‘dungeon’.

(After one of the morning rounds)

Doctor: “Mummy, you know he is not doing the best at his intake, we can’t let him go home as much as I wished to…”

With much reluctance I asked for an NGTube, inserted it for him and that day we brought KR home. I think if I could get him home the soonest, make him more comfortable, drinking more would be easier to achieve.

We worked very hard at feeding him liquid daily throughout that week. In 10 days, KR hit 900ml a day and I removed the tube from him. It was very difficult scaling this mountain because KR could only take fluid via spoons. And yes, we spoonfed him all the liquids. Sometimes a 150ml feed could take up to 45minutes … we sustained his interests with songs, rhymes, phonics, peek-a-boos and dances. This boy was sitting right at the VIP seat watching his mama perform ‘circus tricks’ while drinking. It was very tiring, some times frustrating and disappointing because after all the entertainment, he may not even finish what was expected and we had to tube in the rest. But we persisted.

Today, KR takes in nearly a litre of fluid a day. Much as I grumbled every day abt the surgeon’s ‘ridiculous’ expectation for this boy, after we have achieved it, we are thankful for that challenge because without that, we would not be training him that hard so as to wean off the NGTube and also, the fluid intake really helped him a lot in his daily poo-poo business.

So proud of this lil boy’s achievement. It was my privilege scaling this mountain with my boy. The journey of the NGTube was indeed arduous but we have made it through. Today, we can stand on this mountain, stick our victor’s flag atop it and praise God for His faithfulness in giving us wisdom to manage the entire situation. Thank you, Jesus.

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Batman has a Cousin

Batman has a Cousin. Written and illustrated by K.X. Sim

Batman has a Cousin.

It’s not a snake.

It’s not a lizard.

It’s not a frog.

It’s not a Dove.

It’s not a sea turtle.

It’s not a spider.

It’s me!

KX wanted to write M.C a book. We took out a piece of reusable paper and I tore it into strips, folded and stapled them to make it into a booklet.

Very quickly, the title was out, and after giving KX 2 prompts to the story line, she continued with the rest. We proof read the story a couple of times and edited it. Through this spontaneous activity, we learnt capitalisation, punctuations and story development. Not too bad for her maiden book! 🙂

World Down Syndrome Day 2018

Enjoying a ride while trying to catch the bubbles.. good stability!

Today is World Down Syndrome day. I made a FB post with this pic and shared …

“Hi, I have a SINGLE Palmar Crease but it doesn’t change the way I use my hand. I wave, hold, give flying kisses… Some have DOUBLE eyelids and some TRIPLE dimples… Everyone is different and I am no different from everyone.”

My Closure for the Colostomy

Looking good here was one day before the surgery. We admitted on the 7th but could only do the surgery on the 9th Feb. Upon admission, the blood sample showed that KR had 2 issues. 1 was his haemoglobin issue being low and the 2nd was the reading for the creatinine being out of range.

The first was solved with 150ml of blood transfusion done over 3 hours and the second was rectified with a bag of hydration. It was definitely worrying when the news was broken to us at 7pm on the 6th Feb. The greatest fear was his kidneys malfunctioning because of the bad reading in the level of creatinine in his blood. In our helplessness we prayed and asked God for His hands to be upon KR and let not this little fighter have a kidney failure.

The repeat blood test after putting him on drip showed a normal creatinine level and this poor boy was actually dehydrating and hence his electrolytes were extremely low. Thinking back, I was complacent in him eating better and better that I have neglected his water intake. I felt terrible in my negligence to have caused this boy one more day in the hospital, more blood test and unnecessary pain.

The 7 hour surgery took place on 9th and it was very successful. The supposed 4 hour procedure extended because KR’s intestines were more developed (since he is much older compared to other babies who had gone through the same) and it required more time for them to carefully detach the colon from the wall and do the reconnection. The second reason was the anesthetist could not find a good vein to set an additional IV plug for him. After multiple pokes on both legs and hands, they succeeded on the right leg.

With so many ops done, this boy doesn’t have many good stable unscarred veins to be utilised. I have actually requested for the anesthetist to set an additional plug because we had a terrible experience last year when KR had to reset a wonky plug on a Saturday. In that episode, right before my eyes, my screaming Son was poked 6 times in the High Dependency ward before they could successfully find one vein to set the plug. The next day, the bruises on his limbs scarred the ‘mama heart’ of mine. I wished the doctor could have been gentler in her approach to prevent the bad bruising… wished a more credible person could be around to help.. wished she could have had more empathy…wished …

No one knew the pain in my heart when I saw him through that episode. Compared to what he had gone through in his life, plug setting could possibly be the least painful but when it was being displayed so brutally before me, I just can’t helped but to feel the wrenching. It’s an indescribable pain and a simmering anger bottled up when I felt my son had become another doctor’s Resusci Anne.

Before a word is on my tongue you, LORD, know it completely. Psalm 139:4

The Lord closed this chapter of pain in my heart during KR’s one week stay in the hospital while doing the closure of the colostomy. God sent Ms S.V.

Ms S.V. is a technician in KKH who specialises in taking blood and plug setting related matters. In 2 seconds, she spotted a good vein to set KR’s plug when he was first admitted on the 6th. Being super competent in her field of expertise, it took her only one attempt to have the blood taken and plug set in place. Throughout the whole procedure, KR did not cry. Each time he cringed, I would engage him with his all time favourite – “The Wheel on the Bus” and the boy would just focus on me and not be too affected by what the Nurses were doing. I walked out of that treatment room, filled with gratitude to God for bringing the best person to KR to have all those procedures done.

The next day, the blood test needed to be repeated. Ms. S.V. was available to help us again but KR was very cranky cos it was his nap time. KR cried in my carrier as I held him down with the Nurses to have his blood drawn. No songs could cajole him cos this poor boy just wanted to nap. I believed the procedure was not painful because Ms S.V. was swift in her actions. At one poke, the draw was successful. But still as I walked back to the ward with a whimpering KR in my carrier, I could no longer hold back my tears. I drew the curtains at his bed and cried softly. Moments later, Ms S.V popped her head in to check on me. She said she felt something was amiss when I left the room though I was smiling. She said she knew I would be crying cos she is also a mother. Beyond thankful, the Lord did not just send an experienced technician to us but someone who is also a mother. That day, I received empathy from this stranger who plastered the emotional wounds I had suffered from the traumatic experience last year.

Ms S.V returned that evening as KR needed to have his blood taken again. She was concerned if she could make it in time to help with the blood taking during her working hours. Due to the late ending of his blood transfusion, the blood test had to be taken at 8:30pm in the night. And no, they could not draw from the plug. Ms S.V. knocks off at 5:30pm. At her knock off time, she was trying to find someone on night duty to be able to help me with KR’s blood taking. She first took a look at KR’s hand and then made arrangements with another staff nurse to help me with it that night. She highlighted to Nurse R.B. the position to poke and assured me the staff nurse is experienced and KR would be in good hands. Talk about going the extra mile!!!

I went back for dinner with KX before returning to be with KR for that dreadful prick. It’s 8:30pm and KR had just finished his first rectal wash out. The day’s numerous procedures had tired him out. The boy was crying inconsolably on my helper’s shoulders and I had to take him over to continue with the final round for the night. The poke was swift but the boy held on tightly to the collar of my blouse this time and screamed, “mama”. What could be more devastating than to hear your own son screaming for help but you can’t save him out of the predicament?

I can’t take you out of this, but I am with you, Son.

Tears welled up and I could no longer contain it… at that moment, the song Great is thy Faithfulness came to mind (a song that I always sing for KR when I was pregnant with him) and I rocked him to sleep with that familiar tune. I believed the presence of God filled the treatment room as we worshipped in praise and remembered our God’s faithfulness. Throughout, Nurse R.B was with us, her understanding silent companion made all the difference. A tissue was indeed all I needed.

In my brokenness, I drove home and I spoke to Father God in the car. The scripture, My God, my God why have you forsaken me?’ Flashed past. The depth of the love of God for me displaced the brokenness and disappointment in God. The Lord loves me to the extent that He did not even spare His own son.

Ms S.V came daily to check on KR’s plug. On day 5 of the stay, one of the leg’s plug had leaked and we thank God it was Ms S.V who helped to set the plug again. This time, it was with numerous pokings inorder for the plug to be set because she could not find any suitable one. But her gentle approach did not leave him with any bruises and neither did wail or scream throughout the procedure. Thankful to God for sending Ms. S.V.  Her love and care for KR closed the painful chapter of ‘Plug Setting’ in my heart. It’s closed.

Hope in the Lord

Isaiah 40:28-31

Have you never heard?
    Have you never understood?
The Lord is the everlasting God,
    the Creator of all the earth.
He never grows weak or weary.
    No one can measure the depths of his understanding.

He gives power to the weak
    and strength to the powerless.
Even youths will become weak and tired,
    and young men will fall in exhaustion.
But those who trust in the Lord will find new strength.
    They will soar high on wings like eagles.
They will run and not grow weary.
    They will walk and not faint.

We are 2 weeks away from the Colostomy Closure operation and today I broke down in the car after running an errand. My exact words to God today were…

“God, you have your favourites and my son is definitely not one of them!”

The tears took over the rest of the conversation and I soon find myself choking as I could no longer contain the gravity of my grief. The Lord let me have my moment and I just bore open my heart before Him. There were no words, I could only articulate with streams of tears, the Lord was silent and my groans dominated the monologue. But, I believed He understood every drop of them; perfectly clear. Psalm 56:8

Many people always commented to me, “辛苦了”, they often think that it’s tiring looking after KR but actually journeying with him is not tiring, (不辛苦)just heart wrenching (很心痛). I can’t find the right words to describe the pain I am going through…the tears probably explain the best.

This coming February 7th marks the 4th operation that KR will be going for in a mere 16 mths of his life.

Throughout these months I prayed continually for healing. I asked God to just open a hole in his bum bum miraculously so that he doesn’t have to go through a PSARP. God heard and I am sure he did, the more I prayed the more I knew His will was for KR to have to go through it. Was God being evil? Why would His will be that for a baby? Why would he want to see someone so small to be in such pain? I had many questions that ran through my head…Was I with little faith or had no faith at all that I can’t witness a physical miracle? Or maybe… there isn’t even a God? …

God being GOd, foreknew the struggle that I would have during this season. During the December holidays last year, I have been seeing eagles. Be it while driving, at the park, or just strolling with KR, I would spot eagle soaring! This repeat visitations made me relook at Isaiah 40 over and over again.

The word of God for this season for me was “HOPE and Trust in Him”. There may be many things I can’t comprehend in my human wisdom but my relationship with God tells me that He is real and He is good. This season, I am also very blessed with the articles from John Piper Ministries. It confirms a lot of things which I chose to believe about who God is and what He is doing in my situation. I am humbled through these readings and the meditations of His word. I am reminded of how great our God’s love is and I am simply in awed.

John Piper Ministries Articles:

1. If God doesn’t heal You

Although God can heal, we must never presume He must.

2. How to Seek the Holy Spirit

“The Spirit of God, the Spirit of glory, will come to you, and rest upon you in the hour of your trial.”

img_0012.jpg

One of the many I saw, thankful for one to be captured.

My conclusion of ‘Hoping in the Lord’ is this: it is not to see a definite change in our situations today but to have the strength to live through life’s toughest (because of who God is and what He says) in view of eternity. And our eternity is so secured in Christ. This hope is assured.

Cooking With KX

1. Home Made Meatballs

Recipe:

500g minced Beef & Pork

1 Tbs oregano

1 Tbs parmesan cheese

1 Tbs Olive oil

2 tsp garlic powder

1 beaten egg

Season with some sea salt and pepper

Sufficient bread crumbs (I used cream crackers and blended them) to ensure mixture is malleable enough to be made into balls.

Shallow fry and serve with pasta sauce.

The Season of Fruitfulness (A Horse Mango)

Another interesting pick while making our second return trip from viewing the durian trees was a mango found on the pavement. It was unripened, had a black top patch on its green skin but other than that it looked very much like a good mango. That same night, my father came for dinner and warned me that such mangoes could smell really fragrant when ripened but are usually found with worms. Two colleagues swung by my place later that evening and one of them concurred with my dad when she saw the Horse Mango in my fruit basket.

4 days passed and the fruit smelled fragrant enough to be eaten. While paring the skin, I went extremely slow because I was anticipating the ‘worms’ that my father and ex-colleague spoke of. Honestly, I cut with a tinge of fear and had pictures of worms squirming and oozing out of the fruit while removing its skin. These unfounded paranoia hindered the way I interacted with the supposedly ‘delightful’ find. To my pleasant surprise, there were no worms and the fruit was extremely juicy and sweet. It can’t beat a Thai honey mango of course because this particular species had a big seed and was fibrous.

Strangely, the Lord led me to remember KR through this mango incident. Just like how my dad and ex-colleague immediately associated this sort of mangoes with worms just by a mere look, many actually labelled children with Down Syndrome too. Our children have certain similar physical characteristics and hence its easy to tell them apart from a normal kid. Hence, some see them as the lesser sort of kids; slow and not very clever. Some see them as a liability; never able to achieve independence. Some even see them as ‘rubbish’, useless and should be thrown; wish they were never born. To go the extreme, some don’t even see them as lives; they are exterminated before they could even see the world. Sad but true, this is the world we live in today. Many do not see the potential children with Down Syndrome has.

A parent I got to know actually put their baby up for adoption after learning that the child has Down Syndrome at birth. The child was 5 months when we got acquainted in the hospital because KR was admitted at 3 months due to Aspiration Pneumonia. Under a very divine encounter, I met the parents and later learned about their decision to give the baby up for adoption. I remembered vividly, the child, Timothy (not his real name),  had very good attention span when I read a story to him at his cot. His neck control was also phenomenal!!! Comparing, his muscle tone to KR’s, his was definitely much much better. I was heart broken to hear about his parents’ resolution to their bitter journey because when I saw the child, I saw great potential, in fact greater than my son because of how KR first began his journey of life. Months down the road, through an acquaintance’s recount, I learned that Timothy was learning to creep and that same week, KR crawled. I felt very sad for Timothy because I know if, and only if, he has that same quality of care as KR, he is definitely going to achieve much more than what he is doing now.

Much intervention and prayers have gone to where KR is today and indeed to God be the glory. It’s never my intention to boast of what my son could do through this post, cos in fact, there are many which he can’t. Many which his peers could and he is still struggling to do. However, I take joy even in his weaknesses, in his inabilities, in his handicap because I know he will only grow stronger and more able to overcome his handicap.

Potential is like gold in a hidden chest, it needs to be unlocked, to be discovered. The Lord has reminded me to look beyond the surface of things in life; the superficial; the physical. Instead, look with eyes of His – that which sees us as…

  • Salt and light                                                                                   Matt 5:13-14
  • more than conquerors in Christ                                                 Romans 8:37
  • God’s handiwork, designed for good works                             Ephesians 2:10

Hence, we can be a contributor to the world, a conqueror in our situation and a creation well loved by God.

KR, this is how mama sees you! The way God does and I love you. Very much.

Grateful Christmas

Last year this time KR suffered from Aspiration Pneumonia and had to stay in KKH for his first Christmas. He was warded on the 21st Dec and responded very well to the antibiotics prescribed over 3 days. I remembered bugging at the PD on duty that I would want to have him home for Christmas and the amiable Dr NG W.D will always amused me with “不是我不要,…that depends on how well this little guy breathes on his own.’

KR’s lungs started clearing up by the 3rd day but he just simply could not wean off the 0.1 oxygen dependency. From what I understood, 0.1 is nearly like room air; its very minimal amount of oxygen dependency that he was requiring. During his stay, KR had the SpO2 (peripheral capillary oxygen saturation) machine linked to his little toes to tell us if he had sufficient oxygenated haemoglobin in his blood. Each time it sensed that KR was desaturating (falling below the normal 95% value), the machine would beep to alert us. At 3 months, KR was very conscious of the nasal cannula placed in his nostril and imagine the multiple tapings that were required to keep everything down. ‘Everything’ would be:

  1. Steri Strip over the cleft lip (with 2 pieces of Duoderm on the cheeks)
  2. Micropore tapes to secure the NG Tube
  3. Tegaderm on the soft tubes of the Nasal Canula on the Duoderms)

Of course, comparing this to when he first had his colostomy, this ‘Everything’ seemed like nothing. But still, I can’t wait to get him back home to nurse him back to health. We prayed like mad but he was still required to stay through Christmas. I remembered on Christmas eve when my impulse got a better of me, I nearly signed the AOR (At-Own-Risk) form just so that KR could go home with us. I wanted to do that because throughout my whole day with him in the hospital, I observed that KR has a bigger tongue compared to normal children and lying supine means his tongue had a high tendency of falling back, hence blocking his airway. Whenever the machine beeped I would roll him to sleep on his sides so that his tongue would fall to the sides and he could breathe better. Needless to say, the rebel in me removed the Nasal Canula from his nostril once I discovered that a change in his sleeping positions could help him attain better results on the Spo2 machine. I remembered videoing minutes after minutes of the Sp02 machine remaining at 100% even without the nasal canula so that I could show it to the doctors as proof for early discharge. After having multiple conversations with different doctors, one managed to convinced me to let him stay over Christmas eve because she mentioned that desaturation usually happen when they are in deep sleep (i.e in the night). She wanted KR to do a night study before agreeing to discharge him.

After praying through, we decided to let KR stay one more night and thankfully we did cos he really desaturated in the night and they had to put the nasal canula back for him.

Annually, we would hold a Christmas Party at our place with the family. As usual, KX was really looking forward to the Christmas Party but LY and I really struggled to have one because we were both not in the mood. With KX in mind, we went ahead with the party, nothing fancy, just a get together and some order ins. The kids enjoyed themselves. I hosted my best but at the back of my mind I was always thinking of my suffering little one. We prayed for him over Christmas that night and we were thankful that he came home on boxing day.

This year, I am really thankful to God for having KR with us for Christmas. It was a sense of bliss. So so thankful.

Son, Christmas can never be better when you are home with us.

 

 

Simple Fun

At the beginning of this December, the 3 kids were out with us shopping for S.R’s 9th birthday prezzie. The kids all skipped their naps that day and of course went a lil’ ‘crazy’ during tea time (their supposed wake up time). Their screams and hilarious laughters echoed through the crowds as they played chuga chuga choo Choo.

My sis and I were definitely embarrassed as the Christmas shopping crowds looked on. I wanted to stop the kids from creating a scene but was very tickled when S.R commanded ‘Pink 100′ to steer left quickly to attend to the ’emergency’.

Who is Pink 100?!?!

And so…KX was Pink 100, M.C Blue 4 and S.R was Purple Double 0. I thought these names were really cute for trains. The kids had a whole load of fun at $0 cost. The whole thrill was in the company and their imaginations. I think that could honestly be a better gift to S.R than the new Birkenstock I bought for her in the end.

Blessed 9th birthday Little One. Yee yee can never forget the way you looked when you were first born. Those bright and intelligent eyes, thick full lips and luscious black hair! What a head turner you were! I am very thankful to God for bringing you into our lives. For being the sweetest in your thoughts and speech. For being the motivation behind me getting a driving license and always trying to finish my work quickly so that I could rush home to play with you. For being my first baby and taught me how to care for KX and KR now that I am a mummy myself.

You have grown really fast and as you graduate into Pre-Teens remember that you are very loved by every one in the family. I love you a whole great deal, your parents much more and above us all, Jesus gave His life for you. Grow in stature, in wisdom and madly in love with God. Amen.

The Season of Fruitfulness (Kampong Durian)

The 2 durian trees near the forested area in my neighbourhood have bore quite a fair bit of fruits this season. We went a couple of times just to admire the fruitfulness of these trees and the adventurous side of me kept egging me on to go in and take a look. I must say after 25 years of not camping and roughing it out in the outdoors, the small trail that’s covered with mere shin-high grass intimidated me.

After the 3rd revisit, I mustered my courage and trudged through the bearable uneven terrain, just to have a closer look at those majestic green lives. Of course, in hope to also pick up some durians too. Within seconds as we approached the tree, Sweetheart found one. Squealed with excitement, I put that little precious into our daughter’s Lady Bug bag. The size was perfect to host this average size gorgeous.

We brought it back home, brushed away all the dead leaves, dirt and ants before bringing it into the house. Won’t wanna risk having any insects infestations just because of a durian. Every precautionary step matters. Intuitively, I asked Sweetheart to fetch me a chopper and a pair of sharp scissors to pry open the durian. Not too bad for a first timer handling a freshly dropped durian. As I wrestled with the King of the Fruit, I recalled the moves my father made when I was very young. He would very often looked for the ‘lines’ on the durians before he delivered the blows! *Bam! Boom! Wah Duh *Imagine Bruce Lee! I imitated and delivered similar amateurish moves. The 5 minute hand to hand combat won me a handsome 9 seeds reward. Unlike the popular Mao Shan Wang, the flesh was thin and and the smell was not overpowering. I totally enjoyed the mildly sweetened fruit as it left me wanting more.