Sleeping postures of Charlene

Various cute/interesting photos of Charlene. Note that these photos capture Charlene's natural sleeping postures; we did not move her in anyway.


Putting up a poll to see which photos you like the best!

Photo 1

Photo 2

Photo 3

Photo 4

Photo 5

Photo 6

Photo 7

Photo 8

(the pillows were placed there to keep her heads up...)

Photo 9

Photo 10

Photo 11

Photo 12

Prayer Request for Charlene

Hi, to our friends who are reading the blog, please pray for the following:-
1) that Charlene's seizures frequency drop back to single digit, and that she is protected from harm
2) that Charlene's bio-clock revert back to normal, and that she sleeps in the night and wake up in the day.

29 July 10

I added the dosage of topomax on Tue. The duration of the seizures seemed to have shortened but the frequency has not. In fact, Charlene is almost hitting 20 daily for the past few days.

I called the neurologist's nurse again. I wanted to know if there is a need to send Charlene to the hospital. It seems like only when there are clusters of seizures (3 in an hour) or duration of each seizure lasting 30 minutes then should admit to hospital. So, she thinks we should manage at home.

I think I understand that management of seizures is like that. Once stabilised, try to reduce dosage. Then disequilibrium, fine tune med again. It's dynamic equilibrium and every time there is disequilibrium have to trial and error. Sigh.

27 Jul 10

Charlene's bio-clock has inverted. She no longer sleeps soundly at night, but instead wake up at night to cry and demand for attention.

Bec of her frequent crying at night, my mother-in-law and Dez have to wake up to help my father-in-law. Both of them are tired from the lack of sleep. If this keeps up, all 4 of us will be exhausted.

Lord, please give us the strength to take care of Charlene. Lord please help Charlene to revert back her bio-clock.

26 July 10

It's Charlene monthly physiotherapy session. Her cortical thumbs have improved. The left thumb muscle is relaxed and doesn't really require the splint anymore. Thank God! The next step is to get Charlene to grab things. However, she has yet to focus and track so it's almost impossible to get her to grab things purposefully. The occupational therapist told us to give her different textures to touch so as to stimulate her.

Charlene slept through the physio session. No matter what the physiotherapist did to her (rolling her, stretch her, etc), she refused to wake up. We were surprised but glad to know that Charlene's neck is ok. Cos recently she kept lying on her right, we were so afraid that her neck muscles would stiffened. Thank God that everything is fine.

The neurologist's nurse spoke to me over the phone. The plan is to increase the dosage of the 4th anti-convulsant medication and to monitor.

25 Jul 10

Once again, we brought Charlene to worship service on Sun.

While on our way to service, Charlene puked out her phlegm & some milk. Fortunately I was fast enough to turn Charlene out, so her clothes (and mine) were untouched.  Unfortunately, it was right in front of a hair saloon (not opened for business yet; on our way back, we apologised to them for causing a mess).

Charlene was again very calm and alert during the service. Surprisingly, she didn't sleep during the service. We attributed that to the fact that pastor Timothy was someone she was familiar with.

Since Charlene was so cooperative, Dez decided to bring her to Northpoint for a haircut. Again, Charlene was very cooperative. No cries, no fits. So now Charlene has a boyish hair-cut and look more like Daddy!

Praise the Lord for His grace upon Charlene! We are grateful that we are able to bring Charlene out even for a short while. Though logistically it is difficult (esp with the 2.5hrs feeding), we look forward to attending service as a family every Sunday.  God is good!

Before hair-cut

After hair-cut

17 - 24 July 10

After the vaccination, the frequency of Charlene's seizures went up to double digit daily, hovering around 14-15. I called the neurologist on Mon (19/7) who told me to monitor further. We were alarmed as the trend seems to be going the same way like when Epilim was cut. We find ourselves questioning our decision. Should we have followed the neurologist's instructions to cut the medication? But Charlene is on 4 anti-convulsant medications and too much is no good for her in the future (anti-convulsants basically sedate her, and cause her to be lethargic and have many other side effects). Already, she is only awake for 5 hours a day and her muscle weakness is serious.

Anyway, we prayed to God (19/7) and enquired if we should continue cutting the medication in future. The next day (20/7), Charlene had only 5 episodes. But from wed till the end of the week, she had more than 10 daily. What was amazing is that when we brought her out to cell on Fri and to church, she didn't have any.

11-16 July 10

Dez flew to Melbourne for conference.

Thank God for His grace.
Thank God for my brother-in-law who took 3 half day leave to help out at night. He was sleep deprived.
Thank God for blessing me and my mother-in-law with strength and wisdom.

Charlene hasn't been too good these few days. The daily frequency of her episodes is rising. Before we cut Kappra (anti-convulsant med) to once a day, it was around 2-3 daily and an occasional bad day of more than 5. This week has more bad days than good days. Today (16/7) in particular is bad (going to hit double digit). And it is obvious that Charlene is unstable. She goes into the episode if aroused/disturbed when she is sleeping.

Today (16/7), my mil and I brought her to see the neonat doc. Charlene was so well-behaved and calm. She even smiled at Dr Natalie. I told the doc that Charlene likes her as she is praising Charlene to the skies.
Charlene weighs 7.195kg and is in the 10-20 percentile. Dr Natalie is very pleased and said that she could finally use the term chubby to describe Charlene. Praise the Lord!

With regards to Charlene's daily puking of phlegm, Dr Natalie doesn't think medicine would help and has refer us to the ENT doc. Charlene also had her 2nd dose of vacinnation finally.

11 Jul 10

11 Jul 10


Praise the Lord! We were able to bring Charlene to church for the 2nd time!

This time it wasn't as smooth sailing as the last time, bec Charlene was awake when we walked to church. She puked out a mouthful of milk and started crying. Her gauze was also wet so she was very unhappy. We had to changed her clothes and her gauze before we went into church.

She was very alert during the worship. Though initially she was startled by the drums, she eventually got used to it.  I noticed she prefers the ballad-type of worship songs, instead of those punk-type, cos she was more absorbed by the former.

It was amusing to see her getting upset when the worship stopped. She started voicing her protests. Fortunately, there was a prepartory song, and she stopped immediately during the song.

Like any typical kid, she slept soundly during the whole sermon.

And wake up after the sermon in time for the concluding song.

10 Jul 10

10 Jul 10


Some of our uni friends came to visit us in the evening. Charlene was surprisingly alert and opened her eyes to see them. She was quite well-behaved in front of them.

We fed her milk, and told our guests to keep some distance, cos Charlene's merlion skills are formidable.

Though she was tired, she just could not fall asleep. We think its bec she was eavesdropping on our conversation. My friends left when Charlene dozed off.

5 mins after they left, Charlene woke up and puked milk. Looks like she was trying to be a good girl in front of guests, so she controlled herself till they left.

9 July 10

We received a love gift (cash) from our cell group. We thank them for their thoughtfulness and their prayers for us throughout this time. Even though we only joined cell group after Charlene was born (short period of time), our cell group has been a key support for us. Thank you everyone in cell. 

8 July 10

Charlene was sleeping happily. The moment we stepped out of the house, she stopped. It seems like she wants to see things. Waited for a super long time to see the neuro doctor (not much use). Charlene wants to be carried and to walk around so that she can see new things. While waiting for medications at pharmacy, she was happily looking around.

Based on doc's advice, we cut dosage of one of the anti-convulsant medicine (Kappra). Last evening and early morning, we saw a spike in number of episodes. We will continue to monitor the situation closely. There can be 2 possible reasons. One is triggered by lack of sleep (Charlene obviously didn't sleep enough in the day as she was awake throughout the whole trip to KKH) or it could be the reduction of the concentration of Kappra in her blood.

Lord, we pray that the spike is one-off. Lord, we pray that we can successfully get Charlene off Kappra. Lord, please heal Charlene and remove the seizures from her life. In Jesus Name, Amen.

7 July 10

I prayed very hard this morning before I brought Charlene to KKH. Her biological clock has become so bad that she slept mostly through the day and wakes up at night. This is a problem as I can't do physio exercises and spoon-feeding her water and brown rice when she is asleep. And if she is disturbed from her sleep, she will start crying non-stop. I was thinking whether it would be a wasted trip to KKH as the speech therapist most likely has to wake her up for feeding.

Thank God that halfway through the taxi ride, Charlene vomitted a little milk and that awakened her. She was crying on and off in the rehab department. The amazing thing is when we stepped into the room, Charlene stopped crying. And the speech therapist was able to assess her few swallows while I fed her water n infant rice cereal.

The speech therapist said that it is really great to see Charlene willing to eat and not rejecting the spoon. She said that there were children who will refuse the spoon. She told me to take it slowly and whenever possible feed Charlene water or infant rice cereal when she is awake.

Charlene currently weighs 6.9kg and is 65cm long. The dietician is quite pleased with her growth.
Praise the Lord! Charlene is able to grow with the pathetic amount she is getting daily.

4 July 10

Praise the Lord!

Cos Charlene showed that she is not scared of loud music, Dez decided to bring her to service today. We have to decide what time to feed her, whether her gauze will be wet, how to change her diapers if she poo, etc etc... Basically a lot of uncertainty. But we made our decisions and trust in the Lord's plan.

Despite the obstacles, we managed to bring Charlene to church. She slept soundly throughout the session. As we were singing praises and worshipping God, Dez and I were touched as we remembered the grace and love that God has shown to Charlene and to us. Charlene also smiled at various time during the worship. It seems that she likes music.

Dez and I also managed to participate in the Holy Communion. This is the 1st time since 4 months that Dez and I have participated in Holy Communion together. At 1st we were worried that she would be hungry bec its past her feeding time. But we decided that we would leave only if she cries, which she didn't.

We pray that we can continue to bring Charlene to church to improve our relationship with the Lord. We pray that she will be able to go to 3 hourly feeding soon, so that we can bring her out more often. We also pray that she will be awake n not crying so that she can do feeding exercises, so that she can consume food & liquid orally.

Charlene's attire for her 1st church visit!

1 July 10 - 2 July 10

1 July 10
Dez will be flying to Melbourne for work on 11-16 July. The bad news is all direct flights have been fully booked (as it is the Melbourne holiday season). He is put on the waiting list and tomorrow is the last day. To go there on transit flight, he might have to leave a day earlier and return a day later. And this time his aunt is not available for help.

We prayed together with Charlene that God will grant Dez a seat on the direct flight.

2 July 10
Dez came home praising God. On the last day for ticket confirmation, he got a seat on the direct flight. Now instead of having to leave a day earlier, he can leave at a later date and time. God answers our prayers!

We brought Charlene to cell tonight. She is so cute. The moment we walked out of the house, she opened her eyes. Usually Charlene faced to her right and inwards to the person who's carrying her (cos that's her fave side). So it was surprising to us that she looked to her left and outward, with a curious expression, during the walk.

The cell was surprised to see us cos we didn't inform them we are coming. We told the worship team to proceed as normal, no need to lower volume as we wanted to see if Charlene is afraid. Praise the Lord! Charlene seemed to enjoy the worship session. She started to be unhappy once the music stops.

Charlene did vomit 1 mouthful of milk during cell and started crying. But we were able to pacify her within 10-15mins (which is a short time for her).

So we conclude that Charlene is not frightened by the loud music. At times, she looked excited! Thus, theoretically, we could bring Charlene out except that we are still constrained by her feeding schedule (every 2.5hr) and logistically (difficult to feed her outside, transportation issue).