30 Sept 10

30 Sept 10

I played with Charlene. Not much response. Not even when she looked at herself in the mirror. But after I took 3 white bears out and make her hit the bears with her hand, she looked excited and was grinning. So I did that repeatedly and for a while, she was grinning. Then she stopped. Perhaps, the novelty has worn off. I took a doraemon whose head bob up and down (those running on solar power) and showed it to her. Charlene had the amused look. It's good that she is more awake and alert and I can do much more with her though I amd afraid whether I'm doing it correctly. Her fits is still bad.

29 Sept 10

29 Sept 10

I don't know what went wrong. Charlene had so many fits . 24 in all and 2 clusters. The problem is Charlene's fits are not at a stable equilibrium as yet. One day good (single digit), one day bad (double digit and clusters). The current anti-convulsant medication that Charlene is on doesn't seem to be working too well. We do not want to add new medication.

Dear friends, please pray for Charlene. Thank you.

28 Sept 10

28 Sept 10

Today is Charlene's first day to school (Rainbow Centre Yishun).

She slept the whole morning. When we stepped out of the house, she opened her eyes to look around. Our neighbour volunteered to give us a ride as they are sending their grandson to nursery and it was on the way. So, we went back to the house to rest first. The moment my mil sat down, Charlene slept. Is she bored of the house? And when we set off again, she woke up, looking around. So amusing. I thank God for sending us free transport.

Charlene is a very good girl. She whined and complained but she did not cry loudly during class. The therapists came to do exercises with her and gave me homework to do. The main focus is to train her neck control and head control. They suggest putting Charlene on her tummy (in prone) as many times as possible in the day. They also say not to carry her unless necessary. Let her sit upright and support her head if it bobs down.

27 Sept 10

27 Sept 10

Charlene had many fits all of a sudden. Every hourly. I would like to believe that her brain is re-wiring and causing this.

My mil and I saw Charlene smile (full smile) in her sleep for at least 20sec. I was appreciating it so didn't have time to grab the camera. Thank you Lord Jesus for encouraging me.

Charlene kept crying throughout the physio session but she did 3 excellent rolls. Wonder what I didn't do correctly. Why is it that Charlene can roll so well in hospital but not at home? The occupational therapist is good. She managed to stop Charlene from crying by getting her to suck the pacifier.

Though physio charges are expensive but they are indeed useful.

25 Sep 10

Auntie June, uncle Jason and auntie Wanfen came to visit charlene today. June and Jason bought a lot of snacks for us, and Wanfen bought diapers.

We chatted about June's new house, wedding packages & other random stuffs. Dez and I felt good chatting with our old friends who come to visit us. It helped us regain some normalcy in our life. Thank you June, Wanfen and Jason for visiting. We really appreciate your visit.

Charlene fits were not good. Her total hit 13. It seems that it is not stablised yet and is yo-yoing. Last 2 daya were single digits and today hit double digit. Lord we prayed that Charlene seizures be kept low with the current med, and that her seizures be healed totally in due time.

24 Sep 10

24 Sep 10
Charlene 'screamed' (fit) herself awake @8am & demanded to be carried. Once she's put down on cot to change gauze or diaper, she will start to cry. And shortly after being picked up, she stopped crying.

Despite her little protests, we managed to finish the physio ex! And she again enthusiastically drank my mother's soup. But she got too excited again and choke on the soup, and pikes all all she has drunk.

My grandma & 4th aunt were amused by her crying. Sound like singing bec got rhythm. Haha.

23 Sep 10

23 Sep 10
Praise the Lord! There were no fits from 12mn to 6am. Charlene was so tired out cos she didn't sleep enough yesterday.

Thank & praise God! Charlene had only 5 fits today; it had been some time since we had less than 8. We pray to God that her fits will stabilsed under 5 per day or lower.

22 Sep 10

22 Sep 10
I told Charlene that coming Mon, she will be going to KKH for physio & after which we'll go visit her nurses @ NICU/SCN. I told her that she"ll get to see her favorite nurse Angeline and she gave me that grinning look.

Charlene is very awake and I thank God that we are able to complete all the physio ex. There was 1 point that Charlene seemed to be listening to music.

The fits aren't that bad; only when she tries to sleep, then it will appear.

21 Sep 10

21 Sep 10
Charlene was quite happy and well behaved in the morning. I told her that coming sat that she will have visitors and that she better be a good girl cos auntie June really want to see her. Then I said "auntie June is going to get married with uncle Jason". And my gal gave the excited look and a grinning face. I was so amused.

Charlene fits are appearing in pairs. It's like after the first one, she will go into a 2nd one after 10 plus mins. Also, she seems to be more easily frightened and have more involuntary jerks.

Lord, pls guide ua and help us. We do not want to add the new medication which has side effects on Charlene's eyes. Please Lord, with the current med or by Your divine hand, take Charlene's seizures away.

Daily remembrance.
Isa 38:20.The Lord is ever ready to save His people in every trouble; The Lord has saved us and He will save us even to the end.

20 Sep 10

20 Sep 10

Charlene had a fit early @6am and started crying. Dez had to go to work so I carried her. She cried & stopped & cried again. Behaving like colicky baby.

I took care of her the whole morning. Did he physio ex; sitting, stretching, rolling, prone (head ex), everything. Charlene was good & didn't complain. Thank God! I talked to her & stimulated her. She showed me the excited look & even looked like she smiled at me. I was very happy.

She's very clever. Once I put her down on the dot, she'll cry & demand to be carried. She threw up a few times today; mostly phlegm.

And praise Lord! When Charlene was awake from 7am - 130pm, she didn't have any fits!

19 Sep 10

19 Sep 10


We managed to bring Charlene to church today. 


But our naughty Charlene was very uncooperative. She vomited just before we left and we have to change her. In the taxi, she started crying and causing the gauze to to be wet. We have to change twice even before reaching church. She was crying in the church and disrupted the initial part of the service. 


However, once again, Charlene stopped her crying during the worship songs. After the singing ended, Charlene got upset again and Des had to bring her out to sing to her and rock her.


Praise the Lord for infusing the Holy Spirit in Charlene that she responds positively to worship songs. Lord, we count our blessings that Charlene likes to listen to songs. We pray that one day she may sing to You and give You her thanks and proclaim her faith. Amen. 

18 Sep 10

18 Sep 10


Charlene seizures seems to be see-sawing.  It was kept at single digit today. We prayed that the seizure episodes will continue to be under 10.


Thank God that Charlene have  developed a sleep-wake routine, waking up at 5-6am, keeping awake till 6-8pm and sleeping throughout the night. Praise the Lord for His blessings, because my FIL can take care of Charlene alone at night now. No longer need to activate my MIL and less tiring on Des. 

17 Sep 10

17 Sep 10

After consulting with the neurologist, we decided to increase topomax dosage to 6+6.

16 Sep 10

16 Sep 10


Des took 1/2 day leave to care for Charlene while I went to Rainbow Centre (a special school) for an interview. We waited about 3 months for this interview; the administrative process was slow. Before the interview, we were told that we need to wait for 6mths to 1 year for available opening. 


So imagine the surprise when I found out that Rainbow Centre has a vacancy for Charlene at the end of the month! It must be God's plan for Charlene to be enrolled in so soon. The weekly physio will be able to help Charlene develop her cognitive and motor functions. The school fees will be about $100 per month, still cheaper than our trip to KK physio.

14 Sep 10

14 Sep 10


Charlene kept whimpering and moaning throughout the past 2 days and nights. Des was very worried that she was in pain bec of the knock. We decided to get our family doctor to examine her head. The family doctor diagnosed it to be wind colic. He prescribed colic drops and said that it would go away in 1 or 2 days time.


My MIL was shagged out after carrying Charlene for the whole night. Managed to persuade her to go and rest in the day. 


I prayed to God that He send us a helper to care for Charlene. Indeed, He responded by sending my mum over! She popped up without any warning. It was fortunate that she came as she helped out in the afternoon. Charlene was well behaved and we managed to complete all the feeding and physio exercises. 

13 Sep 10

13 Sep 10

I called up the neuro-nurse and updated her about Charlene's seizures condition. Got a scolding from her; she reminded me that the danger of not sending her to the hospital is that it will develop into status epileptic, and medication can no longer control the seizures. But she understand and empathized about our reluctance to send Charlene back so soon after her discharge.

12 Sep 10

12 Sep 10


We decided not to go to church because Dez and I were still having diarrhoea and cough. Better that we don't spread the germs to our fellow brothers and sisters.


Finally able to bring Charlene for a hair-cut in the afternoon while she's awake. With the short hair-cut, Charlene really look like a pretty 'boy'! The short hair-cut should keep her cool... we noticed that she sweat less after the hair cut.


While carrying her in the evening, Des accidentally caused Charlene's head to knock on to the wooden sofa set. Charlene didn't respond to the knock and continued to sleep. Des was very concerned about the knock and felt very guilty.


Charlene's bio clock was inverted again. Charlene woke up at about 12 plus and refused to sleep. She kept crying and crying throughout the night. My FIL could not cope and had to seek backup support from my MIL. In the end my MIL didn't sleep the whole night.

Pre hair-cut

Post hair-cut

11 Sep 10

11 Sep 10

Today was a "very bad" day in terms of number of seizures episodes.

Charlene had 29 episodes altogether, with 3 clusters (defined as 3 and more within an hour). According to the nurse, we should have brought Charlene into hospital already, but we were very reluctant to do so, because she just came back home.

We also unsure what the doctors can do in the hospital... they probably would increase the medication and monitor her. Which could be done at home too. So why should we spend the money to go to the hospital? Dez's medisave had already been wiped out (5 yrs worth)... we don't want to go to the hospital unnecessarily.

After much discussion, we decide to increase topomax dosage to 5+5, which is within the neurologist guideline for us.

Lord, we commit Charlene in your hands. Please bless us with the wisdom and insight to know how to take care of Charlene.

11 Sep 10

11 Sep 10

Today was a bad day. Charlene had many seizures episodes (29) that we were considering clusters x 3 (29 episodes altogether) very scary, almost wanted to send her to hospital. Decided to increase topomax to 5+5.

10 Sep 10

10 Sep 10


Charlene cough had gone away, with no more phlegmy sound. Not surprisingly, her vomiting  had also got better. Thank God!

9 Sept 10

9 Sept 10

Charlene is discharged today! Praise the Lord!!!

8th Sept 10

8th Sept 10

Charlene had many visitors today. She was quite pleased to be carried by Aunty Milie. Good thing Milie's phone rang and saved her. When I carried Charlene, she started passing motion and I told the nurse to get some blue sheet. But before the nurse could get back, her shit was all over the floor. I went "Oh No!" and everyone was staring at me and I said "Shit!" and they all laughed.

Milie and Huanjie saw how Charlene immediately became unhappy once she got out of the bath tub.

Charlene was totally uncooperative with the physiotherapist and speech therapist. Even Milie thinks that she is doing it on purpose. Milie said she felt Charlene stiffened in her arms when I said the word "physio". In the first place, Charlene disliked exercises (except sitting) and now she probably associate (I hope she can do that!) physio with the suctioning.

Wendy and Winston came and prayed for Charlene too.

Thank you all (Ah Sang, Bernard & Christine, Wendy & Winston, Milie, Huanjie) who came to visit. We really appreciate your presence and your prayers for Charlene.

3rd - 7th Sept 10

3rd - 7th Sept 10

The doctor wanted to send Charlene home on the 3rd cos based on their records she is doing well. But the truth is she was not maintaining her oxygen when she's asleep and I was quite concerned. Consistent deprivation of oxygen to her organs is not good at all. But ridiculously, she only needed 0.1% of oxygen. It reminded us of her then SCN neighbour who went home with oxygen tank cos the boy needed 0.1% of oxygen and couldn't be weaned off. For a few days, Charlene was like that. We were worried but we continued to pray and trust in God.

The most likely reason is that Charlene's upper airway; her nose and throat are still very blocked. And that's affecting her breathing and causing her not to maintain her oxygen. True enough, after the physio did the suction for her, she was able to maintain for a few hours.

We thanked God that Charlene's cough got better and her upper airway was more cleared and she maintained her oxygen levels.

However, we could not bring her home cos she started having very bad diarrhea (must have caught some infection in the ward).

Charlene's biological clock turned the other way again. She could not sleep probably due to the withdrawal of Kappra (her first anti-convulsant medication) at 12 midnight. We finally took Kappra totally off her after 3 months? But the frequency of her seizures are not stabilised yet. With hindsight, we got my mother in law to do the night shift with my father in law. And true enough, our naughty girl was awake throughout the night and demanded to be carried by her granny.

My parents in law claimed that they saw Charlene turn!

2nd Sept 10

2nd Sept 10

After 2 days of chest physiotherapy, Charlene's cough is better and she has less phlegm. I have never thought that patting her and doing suction is so powerful and useful. The allied health workers (physiotherapist, occupational therapist, speech therapist, dietician) has been of great help to Charlene in her development.

The Home Care nurse was very nice and kept popping by to check on Charlene's button. She helped us source for some items we needed as well.

Thank God for these helpful people. We will fix our eyes upon HIM for Charlene's healing.