Days Without NGTUbe: Beef Bolognese

It’s a joy when I see KR eating healthily and more importantly so, without tube. Here’s sharing one of his set lunches.

1. Congee

We pre-washed and freeze the grains before cooking them. This cuts down the cooking time to only 20mins. A pot of 50mls grains plus 300-400ml chicken stock would yield us a pot of nice warm congee in a relatively thick consistency.

I love to give the children mixed grains for carbo because it contains a lot more antioxidants, nutrients and fibre compared to white grains. However, with KR, I added quite a fair bit of short grains because the congee when we first let him tried on (while he was still on his tube) was cooked with that. Short grains are excellent for making congee cos it makes them really starchy and thick when cooked. A typical Cantonese style zouk, congee.

KR takes these organic grains:

  • Short grain
  • Quinoa
  • Amaranth
  • Couscous
  • Mixed brown rice
  • Millet

To add variety to his porridge. We will either add in butternut Squash, Japanese sweet potatoes, Indonesian honey sweet potatoes or russet potatoes. KR has learned to love his congee cooked this way.

2. Beef Bolognese

Ingredients :

  • 150g organic beef
  • 1/2 yellow onions chopped finely
  • 2-3tbp organic pasta sauce (I used organic pasta sauce cos they are unsalted)
  • Olive oil
  • 100-150ml homemade Chicken stock

Method:

1. Sauté the onions til soft with the olive oil

2. Add in the beef and stir fry

3. Add in pasta sauce

4. Add in chicken sauce

5. Summer til sauce is reduced

6. Blend, apportion and store into freezing cubes

7. Steam a cube or 2 for each meal

3. Chicken stock

Ingredients2 kampong chicken body (or 1 whole kampong chicken), washed and blanched

  • 1 big carrot, cut into chunks
  • 1 yellow onion, cut into chunks
  • 2 sticks of celery, cut into chunks
  • Water enough to cover ingredients
  • 2-3 dried scallops (optional)

Method

1. Bring water to boil

2. Add in all ingredients

3. Summer for 2 hours after 15mins of boiling

Bon Appetit.

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Milestone Unlocked: Crawling

Children with Down Syndrome have exceptionally low muscle tone and that affects their swallowing, eating, sitting, standing etc… they require a lot more effort than normal babies to achieve the exact same milestones. With the colostomy, KR’s muscles were slit and hence it’s a greater challenge for this boy to crawl. The previous surgeries he had also contributed to the wait to this tear jerking moment.

With much hard work, KR crawled today! It was during the usual 7:30am play on the mat that I caught him moving his knees in to catch up with those moving arms! …Right hand left knee, left hand right knee … 1,2,3,4! As I counted on I could not help but To exclaimed a loud “YES” as he finished his marathon! He did it! He took four crawls before his arms gave way and he fell flat on the ground. The little 不到翁 then spontaneously push himself into sitting and smiled. My cheer and affirmation made him grinned from ear to ear.

It’s been some months of training before KR could finish this 4-steps marathon.

When KR first started out with Aunty S., his physiotherapist some months back, he could only rolled from back to belly. His arms were weak then and he could not push himself up into 4 points (crawling position). In 5months KR learnt:

1. To push himself into sitting

2. From sitting still to attempting to reach toys

3. He then stretches further and more aggressively to reach for the toys around him

4. We moved him from sitting to 4 point and then we would move his hands and knees for him in a coordinated fashion

5. He got the groove and the strength and attempted to move his own arms while we move his knees for him

6. Independently, this boy started rocking this body when he was in the crawling position to try to take his first step

7. And now 4!

It’s gonna take a while more before KR is going to crawl busily around the house but at this point we are all just very happy and thankful to God at what he has achieved.

The steps of a man are established by the LORD, And He delights in his way. Psalm 37:23

Just as we have trained you the way you should crawl and move, when you did the way we expected you to, we were so pleased with you. Son, may you always know the way God wants you to move; know His will in your seasons and do exactly how you are taught, I am sure it will bring Him great delight.

Wanton Makin

I love cooking and baking with KX. It’s an activity that involves all 5 senses and I see cooking as an important life skill to have. Today, we made wanton together. This is one easy snack to make with kids and importantly, they will love eating it.

Recipe to make 25 wantons

Ingredients:

1. 200g minced pork (we like I with a littlefats)

2. 6 medium sized glass prawns (shelled, deveined and minced)

3. 6 water chestnut (peeled and chopped finely, but not too fine)

4. 1 stalk of spring onion (chopped)

5. 1 packet of wanton or Har Kow skin

Seasonings:

1. 1/2 a tsp Salt

2. A few dashes of Pepper

3. 1 tbsp Hua Diao Wine

4. 1 1/2 tbsp Soy Sauce

5. 1 tsp Chicken Powder

6. 1/2 a tbsp oyster sauce

Instructions:

1. Combine pork and prawns together in a bowl.

2. Sprinkle salt sparsely unto (1)

3. Scoop up mixture with hand and slap it into the bowl, repeat this step til mixture gets a little pasty

Skip 1-3 and simply start from 4, if you are rushing for time. However, the meat would taste much better after being “beaten”.

4. Add in all seasonings and mix well

5. Scoop 1 Tsp of filling onto the wanton/ Har Kow skin

– flatten the filling a little for easier cooking

6. Dab some water along the edge of the skin and wrap the wanton up

7. Fry using medium flame

Tips: fry ONE first to test out the heat of the fire.

KX’s 1st Instrument

Aunty Rach passed us an old Ukelele recently and KX has managed to master the song ‘Row Row Row your Boat’.

I was actually very impressed with how nimble her little fingers were when it comes to changing of chords. For a first instrument, I think this girl has ace it! So proud of her.

My desire for her to pick up any instruments is so that she could experience personal worship in a more dynamic manner, and also, to play skilfully enough to lead others in worship. I think that would be a beautiful gift.

Sing unto the Lord a new song, play skillfully with a shout of joy. Psalm 33:3

Ichthys 

Through KR’s NGTUbe journey, we got to know Baby N. & his lovely family.

I have always (frequent enough) said that I would snip his last piece of NGTUbe to a thousand pieces, wait! or was it a million pieces, oh well! It doesn’t matter now cos I did not, in the end. I actually left the final piece on the table and contemplated for a good 2 days regarding how I should bid farewell to this 13 month friendship. I decided to just give this tube a good punch oops! I meant a good pose and shoot it with my iphone7.

I twisted its arms to form the greek symbol Ichthys, or sometimes known as the fish. 

According to one ancient story, when a Christian met a stranger in the road, the Christian sometimes drew one arc of the simple fish outline in the dirt. If the stranger drew the other arc, both believers knew they were in good company.

Through the NGtube, we became friends with Baby N and his family. Two christian families drew strength from each other’s faith as we journey with our special little ones. I think the tube has connected us in more than one way. For this, I am grateful.

Back to why I did not snip away the tube… I had mixed feelings because without this tube, KR would not have been able to gain good weight for his previous surgeries. Neither would he have enough nutrition to help him recover and grow. Much as it’s an ally, it was also a foe. There were many times after I had inserted the tube for KR, I would notice some beads of perspiration formed on the tip of his nose. No matter how skilled I was or how swift my actions were, I believe the insertions were never comfortable.

As I write this entry, these were some quick flashbacks that went through my mind…

… my first encounter with the tube

I remembered the night before I was taught how to insert an NGtube for KR, I went to Dr Google. I wanted to have an idea what I was expecting and how I should go about doing it before I meet the nurses the next day. Importantly, I wanted to make sure the insert was swift and accurate so that I can save KR from any unnecessary pain. The pressure was great cos I desperately wanted to bring KR Home and I had to pass the ‘test’ besides the other criteria of learning to change his colostomy bag in order for them to consider his discharge. I did not want to fail and I had very high expectations of myself.

The hours passed by quickly and before I knew it, I was meeting the fangless ‘snake’ face to face. After the Homecare Nurses went through the steps verbally, they said, “…give it a try, mummy.” Confidently, I held the tube about 5 cm away from the gastric openings, applied some lubricant, took a deep breath and made my first insertion.

I failed.

I made the second attempt, KR cringed and cried. I failed again.

Aunty C. (one of the Homecare nurses) immediately, took over the tube and inserted it for him.

I returned home dejected and immediately sent out a watsapp message to my prayer team to pray about it. The next day, 4th Oct 2016. I made the first successful insertion. This time, I prayed.

… why no aspirations? 

Before administering any feeds, we need to first aspirate to ensure that the tube is in the right place. We would first clamp the tube by folding it and then insert a 3ml syringe to the feeding port and try to pull out some stomach juice to test on a litmus paper. If it turns red, orange, yellow sort of colour, we know for sure its acid and the tube is in the right place. In the beginning, I freaked out whenever I made no aspirations ie. nothing for me to test on the litmus paper!! I have learnt to

  1. Use a stethoscope to test for the whoosh sound
  2. Insert 3 ml of air through the feeding port into the stomach to ‘uncoil’ the tube and then aspirate again.
  3. Move the baby a little so as to move the tube and then aspirate again (cos the gastric openings could be blocked)
  4. …remain calm

 … the Season of NG Ng NG tube

Looking back now, I am just thankful at how the Lord had seen us through with respect to just the NGtube. He provided a dedicated Homecare Nurse (Aunty C) to walk us through those fretful times, kept KR safe from all the possible accidents that could take place throughout the 13 months and the deliverance from a possible G-Tube insertion. Thank you, Jesus.

 

 

Standard vs Non-standard

When KX used her chopsticks to twirl her udon this afternoon, I first asked her, “why did you do that?” 

Taken aback, KX gave me the ‘mm… why can’t I do that?’

Yah! Why can’t she do that? 

Sometimes conversations with KX made me challenge conventions that  are set in parenting which were taught to us either from our own parents, read up from the internet/books/parenting resources … or modelling from others, blindly. 

Today’s topic was ‘the proper way of eating.’ She made me questioned why I was so particular about how a pair of chopsticks ought to be used. She has used it creatively and I nearly extinguished that little spark of invention, critically. I believe that parenting becomes more effective when a child’s voice is heard (often enough); and when parents are reflective practioners of the way they train up their children in the ways of God. I do not think I am a modal parent but I strive to be a reflective one.

KX, this post is for you to remember how you have contributed to the way Daddy and mummy parent you. The Lord has used you to open our eyes to see beauty in the unconventional, special in the non-standard and acceptance in the unusual. You taught mummy to embrace differences today. It was a small talk that led to a big thought in mama’s head. Walk with the Lord and grow up learning to challenge the wayward conventions of the world we are living in today. Be in this world but NOT of this world, baby. Be that godly wired person who will not be easily swayed and conformed to the patterns of this world but instead, be transformed by the renewal of your mind as you read God’s word. Amen! Romans 12:2

Breakthrough! 

Since we took out the tube, we have been experiencing breakthrough upon breakthrough. The past 7 days hadn’t been easy because we were desperately trying to get baby to drink up but there was only just this much that he could manage or desire. His diapers were wet but just not wet enough. Of course I was worried when I saw how little pee pee he had. Barely one very very soiled diaper for the day! With KR’s difficulty in swallowing liquid as the main issue, drinking big quantities was a very far fetched and daunting vision. 

Everyday, all I could think of was how to get him to drink up more. Honestly, I questioned many times if I had really heard God right? With the crazy weather, hydration is just so important. I remembered on Day 2 KR did not pee from 12pm to 5:50pm. I was desperate. I told God, I am going to reinsert at the 6th hour mark cos I was crazily anxious.  At at 6pm, he peed. BIG *phiew*

I hung on to the 3rd day and the 4th …. on the 6th day, a mummy friend who is a medical doctor saw KR when we brought him to pick KX up from school. She candidly remarked that he was looking good but her daughter at his age was still drinking 800mls of EBM a day. It was not an unfamiliar piece of information but when I was reminded of it, the Mother me can’t help but to think why am I depriving my son of nutrition and water? Am I doing it all right? Did GOd really spoke to me? I started to doubt. Again. I walked into KR’s room and watched him napped that afternoon. As I prayed for him, I asked him, in my heart, “would u rather be well fed and nourished and live with a tube or would u rather be malnourished and live freely without one?” I can’t help but to tear a little to nap that day. 

Trust in the Lord … lean not on your own understanding… (Prov 3:5-6)

That anchoring scripture that made pull out the tube came back to my mind again and again. During snack time, I poured out 50ml of EBM and tried feeding him with a tub of purée. He was receptive! As he got a little suspicious of me trying to sneak milk into his mouth with the purée, this boy started shaking his head vigorously. It was at this moment that I decided to take out a piece of Plum teether (wafers) and see if he was keen to eat it with the milk. KR took the first bite and then kept opening his mouth for more. I dipped the wafer into the milk to soften and let him bite on it. And then in between give him spoonfuls of milk. It was a success!!! So I gathered that day that KR will only take in the liquid when he has some solids to chew on.  NO wonder we could ONLY achieve 20ml per day previously cos we gave liquid on its own. 

And I can definitely understand why cos he has never really drunk before. It’s such a foreign skill to him. His first actual oral experience was cereal eating. Prior to that, it’s pure tube feeding and very minimal milk dipping while feeding to help him make the associations between tube feeding and actual eating using the taste of milk, anyway. 

Looking back the past 1.5 week, KR has made phenomenal improvements. Just on day 1, KR has made a 6x improvement compared to when he had his tube on. He drank up 120ml of milk in his total liquid consumption for the day! 120ml may seemed very little but it’s an unexpected volume because We have never reached it before. The next few days, KR slowly increased in his oral liquid feeding and today he had achieved 240ml in a day. 

What helped? 

1. We fed frequently and small amounts 

2. We fed it with solids 

KR’s water consumption for the day has gradually increased over the 2 days even since we discovered the best way to feed him liquid is with the help of solids. His wet diapers have also increased and he is beginning to put on some weight. So so thankful 🙂 we are still working very hard to make sure baby takes about 400ml fluid orally. Since the Lord has told me to take out the tube, I believed he is going to continue to work the miracle; the impossibles which men has said, and to show He is God. 

And I have decided to… 

…pull out the tube.

For the past 2-3 months, KR has become even more aware of the NGTUbe been pulling out his NGTUbe. From once a week insertion to sometimes twice, thrice and there was once when we had to even insert thrice that day.

For the past week, KR will wake up without the tube. Which means, the moment he was conscious, he would attempt to remove it. And of course his daily practising has produced remarkable accuracy! One pull and the entire tube is out.

On 5th Oct 17, KR pulled out his tube when he woke up in the morning. That day the Lord spoke to me about the following:

1. Step out in faith

2. No boldness, no breakthrough

3. Prov 3:5-6

Honestly, I obeyed with trepidation. And I doubted if I had heard God right because, KR was only consuming 20ml of oral fluid a day for the past weeks and the benchmark the Therapists had set for him was 400ml of oral liquid consumption per day before the tube can be removed. In fact, that’s already a huge discount from the supposed 800ml a day consumption for babies his age. 20ml and to take the tube out? It’s beyond walking on waters, it’s walking on waters in the midst of a tsunami!!! What am I to do?

In obedience, I took out the tube.

Day 1.

The joy was bitter sweet when I bathed him cos I could wipe down his entire face without worrying to accidentally wipe the securing tapes off the tube.  And I could put my face close to his and kiss him anywhere without having a tube to think about. Today is so precious. Even it’s for one day, the stress and trepidation I have from worrying about getting him sufficiently hydrated and yet not cause any aspiration is worth it.

The 3 Tablespoons 

It’s been 7months since embarking on our journey to wean off the NGtube. It hasn’t been easy but I am proud to say that KR has established the 3 main meals in a day.

I was looking back at some videos and I can’t help but to thank God for seeing KR through the arduous journey of eating orally. Learning to feed by spoon is likened to someone who runs before learning to crawl. KR has never had any oral feeding experience til we started cereal feeding at month 6. He has never suckle and was trained with the spoon. The spoon is the mama’s bosom to this little buddy; the ONLY tool that we could use then, just to help him feed orally. It was tough.

We used to …

  • Dipped milk while tube feeding him to help him make associations
  • Massage his face before every feed to get him alert for food
  • Sing, dance and clown just to get him to eat… this is not the best way to feed actually. Cos it’s as though we are distracting him with an ipad during meal times. I should remain calm and quiet in order to give him time to process that food is in his mouth and hence he needs to chew and swallow
  • The countless “KR look at the spoon … ” “the spoon is coming.. ah, open your mouth.” “Ok, there is food in your mouth now, chew!” … rendition

After some months, the Therapists suggested inserting a G-tube (wrote more about it in my previous post) so that we could proceed with the palate operation however, the thought of putting him under the knife again stopped me. They think he will take another year before having his tube removed.

The Lord did his wonders as we continued to be diligent in all the facial and oral massages as well as enduring through all the slow and frustrating feeding sessions, trying our best to hit the 3 tablespoons of food. KR took 7 months to achieve 3 meals of solids a day and also 15-20mls of liquid feeds at one go.  We would then tube feed the rest of the milk.

Once again, we are one day closer..one day closer to a day without tubes.  Thank you, Jesus.

In the video above, KR finally enjoy putting a teether in his mouth. We made multiple attempts and this was a successful one! So thankful.

Persistence in Prayers

Heard a audio sermon this morning by P.Edmund Chan on ‘Persistent Prayers’. 

My takeaways: 

‘Persistence in Prayers’ is not about what I want, it’s about who God is and what He wants. 

Persistent prayers is a by product of faith. And that Faith is not believing in what God can give you, it’s believing in God, regardless. 

Luke 18.