28 Mar 10

28 Mar 10

Praise God! Charlene has been much, much more alert today. We managed to put her in the car-seat and bouncer to train her neck and trunk muscles. She had that "why-am-i-here" look whenever we put her in the car-seat/bouncer. She can keep her neck straight for a little while, but tires out easily.

Lord, we prayed that Charlene will develop her neck and trunk muscles so that she will be able to sit up straight by herself. We patiently await her complete healing by Your grace and Your will.

27 Mar 10

27 Mar 10

Today was a bad day; Charlene had more than her usual share of episodes. It might be due to the reduction of medication (sodium valporate down to 0.5ml).

After 1 of her episodes, my father-in-law questioned why this is happening. After Dez said that the doctors don't really know too, he suggested seeking help from other gods.

I said that all that Charlene is now is from Jesus Christ and that we remember all the grace that He has shown to us and to Charlene. We described to him how bad Charlene's condition was after birth, that her head was bloated and she couldn't even move her eyelids. And it's easy to forget how far Charlene has progress, even for us, if not for the fact that we journaled down our thoughts and events.

Dez also said that, regardless of the religion, its essential that we sincerely believe in 1 God. Even for Christians or Buddhists, it shows a lack of sincerity if we go around praying to other deities. How can one be saved if our belief is not firm? And for us, we believe in Jesus Christ and nothing else.

My father-in-law understand the logic and is willing to respect our choice.

At 330pm, Charlene woke up and had the curious look on her face. After feeding her, she continued to have the curious look so we interacted with her. She sucked the pacifier for a while. And she had many facial expressions and was trying hard to smile. Praise God as He answered Dez prayers (see 26 Mar 10 post)! God is good!

26 Mar 10

26 Mar 10


After reducing the sodium valporate level, there was no noticeable change in her episodes frequency. We also noticed that her alertness level has somewhat increased. There are short periods when she will opened her eyes with a dazed look.

Praise God! We decide to cut down the level of medication once again (with prior permission given by neurologist) and will monitor her for another week.

Our concern is whether Charlene is growing developmentally. Even during the period when she's alert, she is not playful. She usually only cries (to indicate that she wants to be picked up) in the afternoon or sleep. It's very difficult to find time to do exercise to develop her limbs muscle and neck muscles. Her tracking remains poor too. And she's no longer interested in sucking the pacifier. And its been some time since she last smiled.

Lord, we prayed that You blessed Charlene with healing, that her brain may regenerate and form new neural connections within different parts of the brain. Lord, we prayed that Charlene will become alert and playful and will learn to interact with the environment.

24 Mar 10

24 Mar 10


Went back to the hospital for a final dressing change on the button. The granulation has obviously got better. The nurse said that there's no longer a need for us to go back for dressing change anymore. Praise God!

Now that we have the assurance by the surgeon, we no longer panicked when we see the button "pop" up during Charlene's straining.

A concern is that Charlene's weight has dropped by 30g within 2 days. This is a concern bec her weight gain is supposed to be constant. We suspect that the current milk amount (45ml) is no longer sufficient to support her calorie requirement. We decided to increase the milk amount go 50ml the next day.

22 Mar 10

22 Mar 10

God is merciful and forgiving.

It was a very wrong start to the day. I was stuck with the irritating omeprazole again and I pushed till the stopper spolit.  Still the medicine didn't go in. As I was doing it, I kindda grumbled to God "Why do I have to go through this?", "Why are you not helping me?".

Things start to go wrong after that... Not only did I fail to get med in, the decompressor got stuck. While washing it, the tip of the brush got stuck at the tip of the decompressor.  Time was already running out. So only 1/2 amount got in. Milk was fed already and when I opened the button, milk came gushing out. I panicked.

Praised God! He helped me out! When I called for a cab, there was 1 immediately. (Last mon, we called for 45min and couldn't get any).  When we reached KKH children surgery centre, the unhelpful staff nurse was not there. Instead, a very nice sister helped me.  Managed to see the surgeon earlier. She said that the button is ok and explained to me how safe the button is by drawing a diagram.

Charlene was crying throughout the whole visit. The moment the dressing was done, she stopped crying almost instantly; that amuses the surgeon. The surgeon also suggested a change in medication to replace the irritating omeprazole to a liquid med. The issue is that this new medication is not as effective as omeprazole.

Praise God! On the day when I think everything will go wrong, He makes it right. Charlene also gained weight. She now weighs 4.775, and increase of 300g in 11 days. Slow but steady.

To our friends...

Hi all,

Sorry for the late updates. It has been a difficult 1 week for me (day shift with my mother-in-law) and Dez (night shift with my father-in-law), especially Dez started working this week. But Praise Lord,  through His grace, we have survived 1 week!

We think its more feasible for us to update the blog weekly instead of daily, though it will remain in the form of daily posts. Dez will update the blog during the weekends (actually, its Dez who's typing now, but for sake of consistency, he will write in my "voice"... got it? =P)

19 Mar 10

19 Mar 10


Went to KKH for the routine check and dressing change. Was told not to worry about the button. Charlene was absolutely unhappy during the check, and experienced an episode.

Luckily in the afternoon, after I prayed to God to grant her peace and sound sleep. She really slept peacefully and soundly. Praise the Lord!

I also prayed to God and thank Him for sending sister Rena who has been of great help and has been most patient in answering our queries.

Dr Simon called and agreed to reduce the dosage of Valproate. Dez and I both prayed to God that Charlene will be more awake and alert after the dosage is reduced, and that the frequency of those episodes will not increase.

Charlene sleeping peacefully...

18 Mar 10

18 Mar 10

Thank God! All praise and glory be to Him forever!

After a week of observation, we see that the frequency of these episodes have reduced greatly (from 7-8 times in the hospital, to 2-3 times daily now). In fact, from 15-16 Mar, there was a 24hour span in which there was no episode at all.

I called KKH to try to shift the neuro appointment forward, but to no avail. Was instead directed to the staff nurse under the neurologists. After explaining the situation to her (reduced episodes, but Charlene keep sleeping) , she said she will update the neurologists and get back to me.

17 Mar 10

17 Mar 10

Charlene was crying and crying throughout the whole day. Very restless and refused to sleep. It was tiring for me and my mother-in-law as we have difficulty coaxing her to sleep. When she finally calmed down, its time for feeding and we have to disturb her again, and she started to cry again. The cycle keeps repeating itself.

After the 9pm feeding, I went to wash the syringe, leaving my mother-in-law and Dez in the room. When I was washing, I heard Charlene's loud cries and by the time I stepped into the room (~5 to 10secs, distance from kitchen to bedroom), the episode stopped. It was the fastest ever episode we've seen. Dez picked her up immediately when she started her rapid cries; the moment he carried her, she stopped. It so amazing. Does this means that it is not seizures?

Sister Rena smsed Dez to ask abt Charlene's condition and how we are coping. When we told her that we were concerned that Charlene is sleeping too much, she suggested that we can try to move the neuro appointment forward. Dez took that as a sign (since it was unsolicited suggestion) and asked me to call KKH tml to shift the appointment forward.

16 Mar 10

16 Mar 10

The surgeon once told me that for kids like Charlene, straining may be a form of communication. After some observation, I think that it may be true. I managed to air her back & she looked happier because there was less straining. So Charlene's straining can be telling us that she is unhappy over something.

Dez prayed for me and his parents, that we may have wisdom and patience in the caring of Charlene.  Indeed, our Sovereign Lord has answered his prayers!

15 Mar 10

15 Mar 10


My day started at 7am. Have to express milk and prepared the medication at 730am. All together 9 types, with some tablets that take a long time to dissolve. After 45mins to an hour of preparation, started to feed Charlene with the medication through the tube. The tube got stuck, probably bec of the coagulation of the powder. Took quite some time to make it flow again.

After feeding, I have to prepared to go KKH Children Surgery Centre for check-up on the stoma. It started pouring and though we called a cab from 945am to 1025am, there was no taxi. My father-in-law has to go flag one at the taxi stand.

The routine check & dressing change only lasted for 5 mins and cost 11dollars. The travelling took 40mins and cost over 30 dollars. Argh.

Charlene is apparently upset with the trip, which cause her not to be able to sleep. She kept crying throughout the afternoon. She only slept soundly after Dez and I bathed her in the evening.

Dez smsed Ah Sang his insecurities the day before, which prompted Ah Sang to come and visit us. He brought his family along, including his son Wei Yang (who suffered a hemorrhage at 8 yrs old. The doctors gave him zero chance of survival, and the family was already planning for his funeral and to donate his organs. But through the grace of Lord, Wei Yang survived and is now 18. The recovery was painful, but Ah Sang's family pull through with Lord's blessing.)

Wei Yang walked from the living room to Charlene's cot to see Charlene. The only response Charlene had was her usual sleeping pouting face.

Ah Sang and his wife shared their experiences and some useful Bible verses. We were very encouraged by their sharing as they have been through worse situation for Wei Yang. We learnt that what is most impt is to remember that in all things we do (including praying), it is for the Glory of God and to expand God's kingdom!

Thank God for sending Ah Sang and his family to encourage us on. Lord, Dez and I are still weak spiritually. Please strengthen us, mould us and use us for Your purpose.

Charlene all geared up to go KKH

14 Mar 10

14 Mar 10

Dez suffered a bout of spiritual attack, having doubts on whether our family can take care of Charlene. He is especially concerned, bec he will need to work tml; and we were barely coping with his presence.

Lord, we pray that You bless our family with strength and peace, that we can take care of Charlene despite all the difficulties.

13 Mar 10

13 Mar 10


Charlene was discharged today. We will need to go back to the hospital on the following mon, for them to check on the stoma's condition and to apply silver nitrate on it.

Lord, we know You are in control of our lives. We place Charlene and ourselves in Your hands. Though we do not know why the episodes are still happening, Lord, we trust in Your love and will wait patiently for Charlene to be healed completely.

11-12 Mar 09

11 Mar 09
I was feeding Charlene at 8pm when I saw that her stoma (button) is leaking from the sides. Dez put stoma adhesive powder. At 10pm, it was still leaking and quite wet so Dez put on the duodem in an attempt to make the stoma tighter. At 12 midnight, Charlene was straining by a lot and the milk that I just fed was coming out by quite a fair amount from the side of her stoma (button) and the duodem was already wet. Also, Charlene strained so much that it looked as if the whole stoma (button) was going to be pushed out. It was really scary. Dez decided that we would send Charlene to Children Emergency immediately in case things got worse.

Upon arrival, Charlene's temperature showed that she had fever (It's probably because I wrapped her too tightly and gave her blanket). The doctors on duty are not specialists with regards to the button so they suggest that Charlene be admitted for the surgical doctors to have a look (They also want to be safe cos of the temperature).

On our way up to the ward, Dez and I saw Charlene smile (We figured that it could be the aircon that is making her so happy).

12 Mar 09
The surgeon who operated on Charlene came to take a look and said that the stoma is not of concern. She will get the nurses to do something to stop the leakage. She also said that Charlene has got 2 other problems that would affect the stoma; the acid reflux and the emptying of her stomach is slow. She showed me how to put Charlene in the best position for feeding that would aid in a quicker emptying of the stomach.

I told her that Charlene strained a lot and how it looked like the whole stoma would be pushed out. I thought that she could be straining due to reflux. While acknowledging it, the surgeon said that she had seen cases whereby the child does not have reflux but keeps straining (she said probably due to neurological impairments). And the humid weather at home and the sudden new environment could have caused Charlene to strain as well.

The surgeon and the other surgical doctors were shocked by the black marks (some of them thought that it was a birthmark) on Charlene's stomach due to the leaking of silver nitrate when Dez last did it. The surgeon gave me a good scolding and said that silver nitrate cannot leak in this manner as it burns the skin.

In the afternoon, the nurse who bathed Charlene gave me another good scolding because I stupidly applied Desitin (diaper rash cream) in Charlene's vagina area. She had a hard time cleaning it and said that it could cause urine infection. I guess I was too tired and was not thinking when I did it cos I recalled one of the nurses telling me not to apply there. I also asked her how to clean Charlene's mouth and watched how she clean Charlene's ears.

Dez also learnt from the nurses to leave the feeding tube there for 2-3 mins after feeding for the milk to go further into the stomach. This could prevent the milk from coming out immediately to the surface when Charlene strained.

I thank God that Dez and I are given this opportunity to learn the mistakes that we have made. Indeed we are grateful that the mistakes we made did not cause much harm to Charlene. Perhaps God wanted to give us (and my father in law) time to rest and recharge ourselves as well.

Photo of Charlene in over-sized pants

Hospitalisation

Charlene has been re-hospitalised last night. Condition is stable though, but under monitoring.

More details when we get back from the hospital...

To all our friends

Hi friends,

Dez and I have not been able to update the blog as regularly as we wanted. It is a very tiring period for us as we struggled with the handling of Charlene 24 hours, worrying about her condition, and the various spiritual attacks.

Thank you to those who take the trouble to send us smses of encouragement. Though we might not be able to reply because we might be occupied or tired, we are glad that you still keep us in your thoughts. Pls keep those comments and smses coming, as it will serves to encourage us during this period of affliction.

Please help us pray for healing of Charlene, that her seizures and acid reflux be removed from her life, and that we have the strength, wisdom and faith to take care of Charlene.

10 Mar 10

10 Mar 10

Two crises happened today.

1) After feeding Charlene in the afternoon, Charlene suddenly vomitted (merlion style) all the milk. Then her lips turned blue for almost 10 secs. Fortunately, I didn't have to perform CPR on her.

After bathing her and changing her, she started crying loudly. It sounded like she was hungry again, so I fed her with another bottle of milk. After which she cried and regurgitated another 10ml of milk.

2) My father-in-law fed Charlene with 70ml of milk, about 1.5 times of the original amount. He didn't check the amount of milk in the bottle and simply gave her the full amount. I called up Sister Rena to check and got a scolding from her.

Charlene also have a few episodes of super-frown throughout the day. There seems to be a regular pattern to the time of occurrences. We also noted that some episodes are slightly different from the "classical" ones. We do not know what this means, but we are keeping track of all the episodes.

Lord, I wish I have the energy to take care of Charlene. Please grant me strength and wisdom. Lord, Your Holy Spirit be with Charlene to protect her from the evil one.

9 Mar 10

9 Mar 10

Charlene had 1 super-frown episodes at around 4am. Both Dez and I were quite shocked. Dez thought that the episodes have been taken away already, but it is not to be.

The first day after Charlene's discharge. It was a very hectic day. Amidst the 2 hourly feeding (which includes preparing the milk, add in the medication, wash the syringes, changing diapers, etc), we still have to figure out the best logistics arrangement. Dez also have to cracked his brain thinking how best to teach his dad how to add in the medication. All this, on top of the sleep deprivation the night before.

In the end, Dez created a schedule of the medication list throughout the day, and have to translate it into mandarin for the benefit for his dad. He also have to create a colour coding system to ensure that his dad know which medication to mix. However, we decided not to let him handle the anti-convulsant drugs, as a mis-dose could have serious implications.

Dez had a spiritual attack in the afternoon and prayed for the Lord for guidance. He randomly flipped to a page in the Bible, and the Lord's answer for him was Ecclesiastes 1:1. He was dumbfolded by the answer, as the Lord didn't give him encouragement, but instead point out to him the priority of things. He will make God his first priority and seek to cultivate the divine relationship.

8 Mar 10

8 Mar 10


The doctors did their rounds at 1030 am and said that Charlene can be discharged today.

Praise God! He is truly amazing; with His grace, Charlene had come so far from the day she was borne and totally sedated.

We waited for the paperwork and the discharge procedures to be done. And waited, and waited... We only managed to leave the hospital at around 6+pm.

Fortunately, Charlene was totally asleep throughout the journey home. In fact, she slept peacefully for the first night in her new cot. While she was sleeping, Dez and I quickly made the final adjustments to all the logistics arrangements.

7 Mar 10

7 Mar 10

Charlene was slightly more awake today as compared to the past 2 days. Was able to play with her for about 10 to 15 mins. She also randomly opened her eyes to look around.

We also noticed that Charlene is able to sleep without being in prone position or being wrapped up. That's good news for us, as it means that its easier for us to care for Charlene at home. It also shows that Charlene has capacity to learn and adapt. Praise Lord!

We also thank the Lord for blessing Charlene that her super-frown episodes did not appear for the past few days. Lord, we thank you that she's more alert despite the increase in medication. We will wait patiently for your complete healing of Charlene.

6 Mar 10

6 Mar 10

We were tired after spending the night in the hospital. Wanted to leave early, but we were quite concerned about the stoma ("button" through which Charlene is fed) as the flab appears red. Before we left the hospital, we bumped into Sis Rena right outside the door. She said she will check the button and use silver nitrate to "burn" the excess flab. Thank God for his timing, because we can go home and rest peacefully.

We only reached home at around 1pm. Was totally knocked out and slept till 7+pm. At night, Dez printed out the photos, showing the different expressions of Charlene, and we made a huge thank-you card for KKH staff.

5 Mar 10

5 Mar 10


The doctors held a family conference to explain to us their treatment plan (basically wait and observe) and why they recommend keeping Charlene in hospital till next mon (initially planned for discharge on next day). Of course, they said that we can go ahead and bring her home on next day. Well, they are professionals, so there's no way to argue with them.

Room in today with Dez and father-in-law. Basically, we stayed in the hospital throughout the night in a separate room from other babies, and we are in charge of taking care of Charlene ourselves.

Bec of the new medication,Charlene was totally zonked out and slept throughout the night.

Something amazing happened. Charlene started having hiccups at around 630pm. I prayed for Charlene, and asked that Lord take away her hiccups. True enough, soon after my prayers, it did go away. Praise the Lord!

1 Mar - 5 Mar

1 Mar - 5 Mar 10


Charlene's condition fluctuates across the week. Sometimes good, sometimes bad. The docs tried to increase the valproate medication but there is no noticeable improvements in Charlene's condition.

Found out from one of the sister that the doctors have ordered for a third medication to be added. Was rather pissed because we told them that we wanted to be consulted before a new medication is added.