Nice photos of Charlene

Dez was looking through the old photos and came across some good photos (that we didn't know we had).

Charlene's sitting in the car seat and waving "hi" to the camera.

Queen Charlene sitting regally in her "throne" (which is her mummy, daddy, grandma and grandpa or whoever is carrying her). She wants to be in her "throne" all the time in the day.

Charlene in her koala bear position. No prizes to guess which picture is the mummy/daddy tummy.

Charlene and her bian zhui expression.

And our favourite photo... Charlene with her cute pleading expression. Doesn't she remind you of the Puss-in-boot of Shrek? =)

29 June 10

Charlene is still very cranky in the day. It's very weird. She would be sleeping in the morning (tat's the time I read the Bible, pray or play DS Lite). And all of a sudden at 11+, she would wake up and start crying non-stop. And it will take very long before she is comforted. And this will go on and off throughout the afternoon but once the sun sets and night falls, she becomes the quiet and good Charlene.

And after she cried, feeding her milk immediately will result in vomiting.

We thank God that we are somehow coping with it. One thing we do know is Charlene is a clean girl. So we check and ensure Charlene's wet gauze, diaper and shirt gets changed. If all that is done and she is still crying, we have to rock, pat, sing song etc. And if it still doesn't work, we just have to wait till she stops. Maybe, it's the 'phlegm' (not too sure if it is or salivia) that is making her uncomfortable. Sometimes I put her in prone and she is able to quieten down and sleeps.

I really don't know why she is so cranky in the day. A few possible reasons.
1. Her brain damage resulting in her inability to control her emotions and behaviour
2. Side effects of anti-convulsants
3. Temperature in the day too hot for her
4. She is uncomfortable but we fail to satisfy her needs
5. Evil spirits

And something is freaky also. If the day is a good day, i.e. 0-1 episodes (seizures) or frequency of vomitting, when we talk about it or think about it, almost immediately things will start to go wrong and go the other way. And we start to think that it is a taboo to say and behave like superstitious individuals. It must be the devil's way to make us do such things to draw us away from God.

We will not be afraid and will continue to trust in the Lord with all our heart!

23 June 10

Charlene is very cranky today. After I fed her halfway, she started crying and the button started leaking. As I was cleaning the stoma, milk was gushing out that I panicked and lost my cool. That obviously didn't help as Charlene cried even louder. I was very pissed as time is running out (taxi coming soon at 1245pm as she is supposed to go to KKH for physiotherapy). Also, the leakage is very bad and the gauze that I changed was soaked almost immediately. And cos she was crying non-stop, I couldn't continue feeding her.

I was very angry and called Dez to express my irritability. And it didn't help that my fil kept saying unconstructive comments showing his lack of understanding of the whole matter. I seriously didn't want to bring Charlene to KKH but Dez said that it wouldn't matter since staying at home doesn't mean she will stop crying (which is the truth).

Thank God for the nice taxi uncle who waited for 15 mins till 1pm without starting his meter. Charlene cried her way to KKH and through the whole physio session.

After I diligently rolled her almost everyday, her rolling has improved! Thank God! And her head control and neck muscles are better too. The therapist told me to add another exercise; turn her head in prone position (which was something Charlene could do when she was very small but due to lack of practice, she had forgotten how to). Charlene finally slept soundly at the end of the physio session after being put in prone.

The occupational therapist came to check on her cortical thumbs while she was asleep. Her left thumb has gotten straighter as the muscles are more relaxed but her right thumb still needs more stretching.

At the end of the day as I reflected, I found myself to be like the Israelite (in the Old Testament), always complaining and whining to God. I should count my blessings. God is good! Charlene is improving!

22 June 10

For the past few days, Charlene has been very cranky especially in the day. If it's because of wet diaper, wet gauze or hungry, she will stop crying once her needs are satisfied. But sometimes, we don't know what she wants. She just keeps crying non-stop even when she is carried.

I wonder if she lacks water. But the surgeon has specifically told me not to pump in water unnecessarily.

We are currently feeding Charlene every 2.5hrs. We pray that we can transit her to 3 hourly feeds successfully. We pray also that she can take in more milk for the current amount is obviously too little for her weight that it is a miracle that she is still growing...

21 Jun 10

Two of our friends visited us today. All 4 of us had a great chat about random stuff in the room, with Charlene sleeping soundly.

As typical of Charlene, she behaves properly in front of visitors. No crying, no tantrums.

Hence we welcome all visitors (2 or 3 persons) to visit Charlene (and grant us some peaceful days/evenings =D). Just let us know early, and we can plan you according to Charlene's feeding time.

20 June 10

We received a cheque from an anynomous person from our church. We thank him/her for the love gift.

We thank God for His providence.

We also like to thank our church (Yishun Methodist Mission) for keeping Charlene and us in prayers. And also our friends, colleagues and relatives and the many fellow Christians (whom we do not know, from New Creation Church, Providence Presbyterian Church, Covenant Evangelical Free Church) for praying for us as well.

19 June 10

It's Dez birthday today. Yesterday (18 June), I told Charlene many times to smile at Daddy tml cos it's Daddy's birthday.

Charlene woke up early, 8am. Dez and I were talking to her. And she smiled. Not those wide grin or beam but she really smiled. It was her best effort ever (not those half-smiles that we have been writing about). We were very happy. Though we know she may not smile again soon, we are glad her smile is improving. And once again, she proves herself to be a good girl (listened to her mummy).

Thank you Lord for the encouragement!

13 - 18 June 10

Dez flew to Australia to work.

By God's grace, we survived the week without him. Thank God for his aunt who came to detol Charlene's room, cut her hair and bought diapers for her.

Charlene looked even more like her Daddy after the haircut.

Thank God also that her seizures have more or less stabilised at less than 5 per day on average.

Some pictures of Charlene...

We realised that we haven't posted photos of Charlene for some time. As Charlene spent most of May in KKH, we didn't have many pictures of her.

Anyway, she currently weighs 6.27kg and 62cm in length as measured on Mon (7 June). We thank God for Charlene's growth!

Charlene bathing in KKH. She likes to be in water, and becomes unhappy once she's out.

Charlene doing the EEG monitoring. Extremely unhappy during the whole session.

Charlene looking up and not on her ears. Thank you Aunty Audrey for the useful present

Charlene scratching her pretty face. She already had a few scratches...

Her favourite position in SCN, the prone position. Now her favourite position is in her mummy/grandma/granddad arms. But we are putting her in prone position to try to improve her neck control.








Charlene and her piggy-face look.

12 June 10

Dez will be going to Australia to work from tml to Fri (18 June 10).

We are worried about manpower issue. Thank God for answering our prayers. Dez's brother will be home early from work to help out. Dez's aunt (an experienced baby-sitter) has kindly agreed to help out on Tue, Thur and Sat. We would also like to thank our cell group for the help offered to us.

We pray that God will grant us strength, good health and wisdom in taking care of Charlene while Dez is away. We also pray that Charlene will be protected, is well and will be a good girl in her Daddy's absence.

10 June 10

Charlene's current medical status

1. Seizures
The new medication (Topiramate) was added 26 May. Hard to tell if it's effective cos the frequency differs day to day. On a good day maybe 2 episodes. On a bad day, 10 episodes. However, we thank God that at least it wasn't in clusters (meaning a couple within say an hour). The duration has also shortened. On average, each episode is about 10 sec.

We continue to believe and pray that God will heal Charlene's brain and the seizures will stop when she grows up.

2. Reflux
We thank God that her reflux has gotten better. We think that Charlene has learnt to better control her sphincter muscles. She seldom vomit all her milk out without reason now. It's only when she coughs or strains to pass motion, she will vomit some milk.

3. Behaviour
Previously, Charlene won't cry for milk when she is hungry. But now she does.
Previously Charlene won't cry when she is being poked with needles. But now she does.
Previously Charlene won't cry when she's upset (wants to be carried/ gauze wet). But now she does.

4. Oral feeding.
Charlene has started taking food through her mouth. And she's obviously enjoy eating the brown rice, bec she chews on it enthusiastically. However  she tires easily and can tahan only 10 minutes.

5 Jun 10

5 Jun 10

Charlene vomited out milk after 1 of her feeding. As she tried to cough up the milk, her face started to turn blue. Dez and I was very worried that we had to perform CPR or bring her to the hospital. Thank God that she managed to cough out and cry, and her breathing become normal.

We pray to God that He extends His blessing to Charlene and protect her from all harm.

4 June 10

Praise God! We brought Charlene to cell group today.

In the morning, I prayed to God to bless Charlene with sound sleep so that she will be awake and alert. I also asked God to remove obstacles that may appear to hinder us from bringing her to cell group. The obstacles did appear. Charlene had fever at 1pm and though I sponged her and gave her panadol at 3pm, the fever was still there at 5pm. But amazingly when we were going to set off at 745pm, her fever has subsided! It was also raining but the rain also stopped when we were setting out.

As Dez carried her walking past kopitiams and shops, Charlene was looking around. We brought Charlene up on the bus for the first time. It was only 1-stop but we were happy to know that Charlene is not scared. At our cell group leader's house, she was looking around and was quiet and well-behaved.

We thank God that we were able to bring Charlene to cell. It was good to worship and praise Him. We also thank our fellow brothers and sisters in Christ who have been praying for Charlene daily/regularly.  

3 June 10

My mil and I brought Charlene to KKH for physiotherapy. Charlene was sleeping but the moment the physiotherapist appeared, she started crying. Amid her cham crying, the therapist carried on with the exercises; rolling her, sitting her, putting her in prone etc..

The therapist was quite sad that Charlene's tracking has deteriorated, (She said "it's like back to square one when we first started."). She attributed it to Charlene's medical condition.

However, Charlene's head control has improved and her neck muscles has strengthened! She was able to hold her head up longer. Praise the Lord!

And despite crying so much, she was still doing the exercises though she was less responsive compared to before. 

The therapist told me to be diligent in getting Charlene to do all these exercises especially rolling (cos she's not too good). Every pocket of opportunity when she's awake can be used.

Lord. I pray that You will guide me in ensuring that these exercises are done correctly and consistently. 

2 June 10

2 June 10

I was carrying Charlene and singing worship songs to her. She had the excited look and looked a bit like she is grinning.