14 Aug 2012

I brought Charlene to NUH on the MRT. She was not very happy and on the way to NUH, she started throwing fits in her pram and she kicked so hard she almost flew down her pram. After that she went to sleep (she's already tired having woke up at 7am).

The neurologist after seeing Charlene's past EEG records told us that her brainwaves are abnormal all the time. He then told us plans for the future. Firstly, he explained that we should wean down phenobarbitone since it is obvious that this medicine is not effective in helping her. He said that if the medicine is effective, her brainwaves would not have looked like that. The withdrawal of phenobarbitone may increase her fits. But on the positive side, if the medicine did not help much in controlling her fits in the first place, the removal of it would help increase her muscle tone (meaning she will be less floppy and better able to control her muscles) and increase her awareness and alertness.

The neurologist also witnessed a few episodes when Charlene is sleeping. He said it looks like fits to him. But after I explained that we see less of that when Charlene is on the cpap machine. He thinks that Charlene may be hypoxia. So he plans to let Charlene do a EEG the next time we see him in a month's time. The EEG will be done with and without the cpap machine to see if there is any difference in her brainwaves. Also, the EEG will also reflect whether the withdrawal of phenobarbitone has made any difference.

Also, Charlene's 2 other anti-epilectic medicine is below dosage for her weight. We would have to decide which medication we want to increase the dosage. Increasing epilim has less side effects and would be easier to monitor (blood test to check that the liver is fine). However, potassium bromide seems to be more effective in controlling her fits.

We thank God for opening the doors for us to see the NUH doctor. We do not know how things will turn out to be but at least the doctor is trying and does not view Charlene as hopeless.

7 Aug 2012 - Family Outing to Gardens by the Bay

We took the MRT to Gardens by the Bay. It was a long journey and halfway through, Charlene started throwing tantrums by threatening to kick herself out of her pram. Luckily there were seats so I sat down and carried her. 

I am glad I listened to Teacher Adeline to go there in the evening. We reached around 5pm when the sun is not scorching and we could take some nice pictures. Besides the "super trees", there were plants and flowers and objects typical of the ethnic garden. Malay garden, Chinese garden, Indian garden, Colonial garden and more. It was a large place with open spaces, nice scenery and fresh air. Charlene did not complain so we think she enjoy herself too. 

We did not want to spend money going into the conservatory domes and the bridge. But the free areas are already good for us. We saw 5 couples having their wedding photo shoot. And also a live shooting of a cooking show. 

We stayed to watch the night show; 10 mins music and light show featuring 9 super trees. Charlene was obviously paying attention to the show and watching the lights. She must have been processing so much so that she got so tired and fell asleep on the way home. 

Overall, it was a great family outing and we enjoyed ourselves very much. 

2-5 Aug 2012

2 Aug 2012

Charlene is finally awake in the day. Just in time to see her OT in KKH. Amid the whining, Charlene did well for her therapy session today. She sat and practised her head control with motivation from a toy that was making animal sounds. She also did some rolling.

3 Aug 2012

Charlene finally went back to school after being absent for 4 lessons. She was awake and smiled happily at her teachers. She enjoyed the music and the multi-sensory experience and was upset when it is time to go home.

4 Aug 2012

Three of our uni friends (Wanfen, Joanna, Zhisheng) visited us today and Charlene was very happy to have them. She smiled happily as we chit-chatted and immediately voiced her unhappiness at being put back to bed for milk. She also smiled when Auntie Wanfen took a photo of her.

5 Aug 2012

I finally went on my "annual leave" today. Had a delicious Japanese lunch with Milie and we went ktv together. I haven't been there for 3 years. So I had difficulty with the high notes and went flat with the low ones. But it is really nice to sing with Milie because our voices won't clash. I had a great time with all the duets and it really brought back fond memories of the times we had together in the past. How time has flown; 12 years that we have known each other. I am grateful for Milie that despite our differences, she has stood by me all this while. I wish I could do more for her, just like I wish I could do more for my other friends who care for me.

23 July - 1 Aug 2012

Dez fell sick in Australia and that delayed his work schedule. He had to stay an additional weekend over there. The week has been very difficult for me. Charlene was totally "in US time zone". We missed 4 school sessions. I thank God for the help that I was shown. My church friend Alicia came almost daily to help me bathe Charlene and bought me food. It helped relieve me of some stress.

12-22 July 2012

Charlene's Daddy went overseas to work for 2 weeks. He is currently still in Australia.

Charlene seems to know that. The day before Daddy flew off, she kept awake through the night. She probably was worried that she would fall asleep and miss her Daddy. Unfortunately then, she was sleeping when Daddy left for the airport. 

I have been facing an ever shifting biological clock since. I have no idea what time she will be awake the next day. 

I thank God for His grace, His protection, His strength. I was able to still manage the housework. Though my biological clock unlike Charlene is very fixed. Sometimes, I just fell asleep because I am so tired at 10+ in the night, leaving Charlene alone. It is really very difficult to be doing anything much with her through the night. I have done rolling and neurosuit at 3am before and fell back to sleep after 2 hrs. It is crazy and I am sure those who have been through the first few months with a newborn baby will understand what I am going through. 

When Charlene is awake, she does well in school. She loves going to school. And I am so thankful for that after seeing how her new classmate would just wail loudly and refused to be comforted for half an hour. Charlene will be smiling happily at her teachers and will refuse to sing the "Good Bye song". Sometimes she whined when her teachers said bye to her. 

I also thank God for the love and care and concern showered upon me by my fellow brothers and sisters in church (YMM). When I brought Charlene to service, Phemie carried her for me so that I could worship God. And Bernard and Christine helped me baby-sit Charlene while I went for tuition on Sat morning. When I didn't go for service this morning, Wendy and Winston bought me my favourite Japanese food and delivered to my door-step. And Bernard, Christine, Pastor Erick and Shanti visited me to pray for me when they heard that I was having body ache and Charlene vomitted phlegm. I am very touched by the love and care and concern shown to me by them and everyone who is keeping our family in prayers. Thank you all. 

2 July - 6 July 2012

Charlene has been a very good girl in school this week. Mon was a school holiday for youth day so there was no school. So sad, miss hydrotherapy and feeding session. Charlene was wide awake for Wed and Fri during her class time. She was alert and smiling happily through song time and choosing of toys. According to her school therapists, she showed improvement in her head control and awareness. Her PT said that Charlene seemed to know the actions of rolling better now but she lacked strength to carry it out. Her OT was pleasantly surprised by her improvement. He said that he could tell from Charlene's eyes that she is trying very hard. Indeed. Charlene is such a good girl. She tries very hard in class to respond by opening her mouth big big (but still no sound comes out) and kicking her legs in an attempt to raise her hands. She is putting in effort. Praise the Lord that Charlene is doing so well in school and improving slowly in her way. Continue to pray for a breakthrough in Charlene's life!

28 June 2012

Charlene had physiotherapy session with Siti today. She was really good. She sat by herself in her neurosuit and played with the toy seriously.