Tuesday, April 27, 2010

27 Apr 10

27 Apr 10

The doctors changed their mind and decided not to do the video EEG testing. They basically said that medication is the only way to control the seizures, so they will continue to adjust the medication. The ideal state is that the seizures are largely controlled with Charlene being awake and alert. They ordered to give her an increased dose of Sodium Valprorate and to monitor her during her stay.

Charlene was also diagnosed with diarrhoea by chance. Thank God that the doctors came at the right time when Charlene had just poo-ed. We were thinking of changing the diaper before the doctors came, but somehow, we did not. The doctors did the usual check, and saw her poo and sent it for testing. I actually suspected that Charlene has diarrhoea for the past few days, but noone can confirm it.

Charlene slept better in the hospital and was also more alert when awake. The frequency of episodes were also reduced quite a bit. And this was even before the increased medication was added. We suspected that the diarrhoea coupled with the lack of quality sleep contributed to the spike in frequency. It seems that Charlene sleeps better in the hospital bec of the cooler temperature. We are seriously considering getting an air-con; for now we will turn up the fan speed and test it out.

Thank God for blessing Charlene with healing and recovery. And to grant us and my mil/fil with time to rest.

Monday, April 26, 2010

26 April 10

26 April 10

This morning when I put Charlene down on the bed after carrying her for a long time, I saw a lot of saliva coming out of her mouth. Then it suddenly struck me that cos she might not be consistently swallowing her saliva, it might have caused her not to be able to cry out loud. I was pretty concerned and decided to call KKH to speak to her neonat doc.

After hearing wat I said (increased frequency of seizures, suddenly stopped crying, lack of sleep and drowsiness), the doc advised me to bring Charlene to Children Emergency to check for potential infections. The A&E doc didn't find anything wrong with Charlene but her neurologist wants Charlene to be warded for further observation and to do EEG testing.

Charlene is obviously very knocked out from those episodes. Her condition is much worse today compared to yesterday. Her episodes are happening within a shorter gap. In the taxi, she had one episode and after a minute had another. At the hospital, she sleeps and goes into those episodes and sleeps again. When she wakes up briefly, she stares into space. To me, she looks delirious. She hasn't been like that.

We are very worried. We want to have faith that Charlene will be healed. We thank God for sending Ah Sang everytime we are faced with obstacles. Dez especially want to thank Ah Sang for being there at his time of vulnerability and weakness. 

Lord Jesus, though we do not understand why this is happening, we know You love us and Charlene. Please deliver Charlene. Thank You Lord Jesus. Amen.

Sunday, April 25, 2010

22-25 April 10

22-25 April 10

After 2 days where the frequency was at 4 and 5, all of a sudden, it shot up to 9. And the last 3 days were really bad. It had hit double digits. The episodes almost certainly happened when Charlene is soundly asleep. Sometimes she is frightened by sudden loud sound, sudden movement (when we feed her or change her diaper) and would almost immediately go into it.

I called her neurologist on Fri and all he said was revert the dosage of the med, as if I don't know. Well, we increased sodium valproate back to 3 times a day but it doesn't seem to be working.

3 of our cell group members came to visit Charlene and us. Cos one of them is a physiotherapist, we did some exercises on Charlene. She was obviously irritated. And we were waiting for her to cry. After they left, she went into the episode.

It suddenly struck us. Charlene seems to have forgotten how to cry and her feelings (angry, irritated, scared etc) are expressed by the episodes. Then we realised that she hasn't been crying at all these few days. Previously, everytime we dumped her down on the bed, within 5 mins she would start crying and want to be picked up. And she would definitely cry halfway through her bath. She also cried loudly at the previous 2 physio sessions. Yet yesterday when we took 20 mins to bathe her, she didn't cry at all.

And we recalled that back in the hospital, there were 2 instances when she cried for very long hours and there were no episodes at all. It seems like crying and the episodes are almost mutually exclusive.

We have no idea what is happening to Charlene but having so many episodes (once every 2 hrs) is making her tired and disrupting her sleep. Her lack of sleep will in turn trigger more episodes. Also, she is obviously more lethargic and not keen to play.

We dunno what we can do besides praying. There isn't even anything the doc can do. They will just pump her with more med and knock her out and then say that it's all under control.

20 April 10

20 April 10

Thank God for His grace, his wisdom and guidance. I was randomly surfing for seizures related stuff and stumbled upon an article on the use of sodium valproate (the med we are cutting) on children. The article mentioned the drug interaction between sodium valproate and phenobaritone (another anti-convulsant med Charlene is on). Phenobabitone will reduce the effectiveness of sodium valproate. And we were feeding Charlene both med together at the same timing. So though we gave her 0.5ml of sodium valproate, its effects might be totally cancelled out by phenobarbitone. Basically, the doc only tell us to cut sodium valproate to twice a day but didn't say the timing so we conveniently put it at 8am and 8pm with all the rest of the med.

So we changed the timing for sodium valproate and it seems to work. The number of episodes decreased to 4 times.

Monday, April 19, 2010

19 April 10

19 April 10

It's a bad start to the week. Actually from last Fri (the day we went to the hospital, the frequency of the episodes has almost doubled daily from average 2-3 to 6). Sunday (18/4) was good as the number went down to 4 and I was looking forward to the frequency going back to normal (2-3).

But, from 12 midnight to 5am, Charlene had 4 episodes. And as of now 1030pm, the total for the day is already 8, the highest record ever since we brought her home. Each time, she seems to be awakened by a sudden sound or movement and would go into the episode. And almost 100%, she would be sleeping. Geez, dunno what went wrong. Dez and I are praying that it is not due to the reduction in the vol of one of the anti-convulsant medication.

We can't let Charlene has so many of these episodes. We will see how for another 2 days, if it's still so many, we will probably have to increase the medication. Lord, please grant us wisdom in managing a balance of the medication. Please lay your healing hands upon Charlene and heal her completely.

Dear brothers and sisters in Christ, please pray for these episodes to be removed from Charlene's life forever.

Friday, April 16, 2010

16 April 10

16 April 10

We have a daunting day ahead and it didn't help that the first appointment was with the occupational therapist whom Charlene hates cos her cortical thumbs would be stretched. We pray in the taxi for God's peace to be with Charlene and for a smooth day.

Charlene was awake when we met the occupational therapist. She sucked her pacifier happily and did not even budge nor cried when the therapist stretched her thumbs and put on the splints on her. The therapist was amazed at how calm Charlene was and was very happy with Charlene's behavioural improvement (previously, she cried non-stop).

After we left the therapist, Charlene slept happily in my arms and feeding her was simple. Afterwhich we saw the neonat doctor and managed to get a referral to see the speech therapist. Lord, we pray that Charlene will learn to swallow consistently and that she can feed through mouth when we start her on solids.

Charlene was awakened by the physiotherapist and was very unhappy. Nevertheless, she completed all the physio exercises amid her crying. Her neck is still stiff and needed to be stretched daily to the left (Charlene has the tendency to face right and she sleeps on her right almost 24hrs).

Dez and I are grateful that we got through the day with God's grace. Charlene was quite cooperative and didn't cry much. Thank God!

Monday, April 12, 2010

12 April 10

12 April 10

Thank God for His grace upon us today!

I brought Charlene to the Children Surgery Centre to see Dr Ong, the surgeon. After registration, the clerk needed to take Charlene's weight. As soon as my mother-in-law put Charlene on the weighing scale. she started to cry.


I prayed for God's peace and for her to sleep. Thank God for prompting me on the right things to do. First, I gave her the pacifier which she happily sucked. Then I told my mother-in-law (who was carrying her) to put her hand over her ear (cos the place is noisy with screaming kids and slamming doors). Shortly after, Charlene fell asleep. It was the 1st time she slept in the CSC, the first time she didn't cry continuously (We have been there like 8 times already). Praise the Lord! 

I told the surgeon that the button is still leaking but she didn't really respond to that. She was preoccupied with the hernia. She was happy and said that the new button has helped the muscles to heal and the bulge (which appears when Charlene strains or cries) was not so evident. She said that the muscles should heal in 2 weeks time and Charlene need not go for the op.

Praise God! He answers our prayers! (Thank you brothers and sisters in Christ who has been praying).

I also told the surgeon my concern of Charlene's slow weight gain, only increase by 130g in 7 days, from 4910g to 5040g. The surgeon was surprised that Charlene's weight has increased and said that Charlene is only drinking 45ml of milk each feed. She said that it's better to wait till the hernia goes away then increase the milk amount. Dez agrees with the doc that it is amazing that Charlene can still gain weight based on the pathetic amount of milk drank. Also, she didn't really have 45ml in her stomach all the time. Sometimes, she lost some milk due to vomiting and leakage. We thank God for helping Charlene to grow.

When we reached home, Charlene slept after milk. It was the first time in many days that she allowed us to leave her in the cot in the day to sleep. (She will cry and demand to be carried 12 hrs a day). I started to sing worship songs and saw her smile (full smile) in her sleep during the 2 songs - Amazing Grace and Jesus Loves Me. When I said "God is Good!", she also smiled. Dez and I are looking forward to the day that she will flash us a full smile.

Saturday, April 10, 2010

10 April 10

10 April 10

 Charlene has been vomiting a few times each day for the past few days. The milk will be accompanied with some whitish sticky stuff (shld be phlegm). We also noticed that after she vomited the phlegm, she will cry less and go to sleep.

The button is still leaking but the leakage is lesser (at least it is not gushing out).

Charlene was having hiccups (prob cos she cried too much) and it was making her very uncomfortable. I said a little prayer for her and almost immediately, her hiccups stopped and she was able to go to sleep.

While waiting for our cell group people to come, Charlene was crying and crying so I told Dez to pray for her. And again, God answers our prayers almost immediately. Charlene was sleeping soundly when our cell group people came 15 min later.

Monday, April 5, 2010

5 April 10

5 April 10


The button has been leaking badly since 30 Mar. Today, I brought Charlene to see the surgeon. She suggested changing a new button (another model which works differently) which can better stop the leakage. She also said that Charlene's crying and straining has caused the muscles around her stoma to weaken and a hernia has formed. She said that hopefully the new button can buy some time and let the muscles heal. However, if the muscles do not heal, an op will be necessary.

Lord, we pray that You will grant Charlene peace. We pray You will grant us wisdom to know what Charlene wants so that we can refrain her from straining and crying. We pray that Your healing hands be upon her so that she will not need an op.

Friday, April 2, 2010

1 April 10

1 April 10


This morning, before we left for KKH, Dez and I prayed to God for his grace to be upon us today. We prayed that Charlene would not cry so much and that she would be able to do some physio exercises.

Charlene was looking around half the journey before falling asleep. Initially, Dez wanted to bring Charlene to the Children Surgery Centre but I told him better not cos Charlene would always cry there. And since Charlene is asleep, better not irritate her. Charlene continued to sleep till I put her down on the 'bed' for the neurologist to check.

We asked the neurologist questions abt the "classical",  "non-classical" episodes and myoclonic movements. The neurologist basically told us that due to Charlene's condition, its very difficult to tell whether they are all seizures. The "non-classical" and myoclonic movements may be seizures or they may be due to her neurological impairments. Even the loud shrill crying could be seizures... So basically, no one will know which behaviour is indicative of her seizures.

The good news is that the neurologist told us how to cut the medication level, if her seizure levels remain stabilised.

After seeing the neurologist, we went to the rehab centre. Even though Charlene was crying at the beginning, she calmed down after we changed the gauze.The physio was then able to do some exercises for Charlene. And much to our pleasant surprise, Charlene did track the moving object! The physio said that her muscle tone is not very stiff, and that her tracking were good signs. She taught us some exercises, especially the neck exercise.

The occupational therapist was next. Nothing much, she came to see the cortical thumb, which remained unchanged. We were told to put on her "boxing gloves" (splint) as often as possible.

After we fed Charlene, she calmed down and slept peacefully.

Thinking of saving a trip to KKH, I asked Dez to go to the pharmacy to purchase the medication. Dez was initially reluctant as he felt that we would reach home late, but was persuaded by me. I brought Charlene up to see the NICU/SCN nurses. Managed to see nurse Angeline and Sister Rahima.

After a long delay at the pharmacy, we reached the taxi stand at 445pm. There was a long queue in front of us, and the taxi were only trickling in. Both of us were worried that we would be stuck in the jam, and missed her feeding time; Charlene had already missed 1 dose of medication. Dez grumbled that he expected this to happen. I felt bad for making the decision to collect the medication today.

And a little miracle happened! A taxi came with the sign "Yishun". Noone in the queue in front of us boarded the taxi. So me and Dez jumped queue (at least 7 people in front of us) and boarded the taxi. We also managed to avoid the peak-hour jam, and we reached home at 530pm. We quickly feed Charlene with milk and her medication.

Lord, thank you for answering our prayers. Today Charlene was much much more cooperative and alert. You are indeed a merciful God who cares for His children!

31 Mar 10

31 Mar 10


We brought Charlene back to KKH for appointments. As the button is leaking badly, we brought her to the Children Surgery Centre (CSC). However, there wasn't much tat could be done. The nurses simply cleaned it up and placed thick gauze on it. However, Charlene was obviously irritated and started crying. The more she cries, the more it leaks and the more it leaks, the more she cries. And when she cries, we can't really feed her milk cos she would almost certainly vomit.

She cried continuously so much so that the physiotherapist was shocked by her change in temperament. She can't play and do developmental exercises if she continues crying in this manner.She was also shocked by the leaking button and told us to get it fixed.

We have to rushed back to the CSC. This time the nurses saw how bad the leakage was, as the button "popped" up whenever Charlene cries, and leaked gastric juices. The primary surgeon was not in hospital till next mon, so the nurses had to call another doctor in. They decided to put some gel to block the hole and asked us to monitor and come back the next day.

When we reached home, we were totally exhausted. It doesn't help that Charlene had a few episodes late in the night.

The good news is that Charlene has grown in height (56cm), weight  (4.87kg)and head circumference (37cm)! Even though she's still at the 3 percentile, at least her growth is with the normal 3 percentile range.

Lord, we pray that Charlene will be able to take in food orally, so that the stoma can be removed. Lord, while we pray for that day to come, the stoma will stop leaking so that we can better take care of Charlene.