22 Aug 2012 - Charlene and music therapy

Charlene was awakened in school today. With her eyes hardly open, she smiled as Teacher Ivane sang songs with her. Charlene was already on the slide and waiting to slide down when Teacher Adeline came in and told us to go to the music room for assessment. I am so happy that Charlene is given a chance to be assessed - thanks to Teacher Adeline who has been telling the music therapist about Charlene.

Charlene was not too awake but she is responding to the music. Once the music stops, she is supposed to raise her hand to touch the instrument indicating she wants more. Though she hardly could raise her arms, she indicate by making sounds or through her expressions.

Charlene loves the guitar and was smiling happily. She doesn't seem to like instruments with too high pitch and too loud sounds.

I am also glad that Teacher Melody came up to look for Charlene. As Teacher Melody was activating her neck muscles and getting Charlene to raise her head, I was clapping my hands and telling Charlene to "up up". The music therapist after seeing what I was doing, told Teacher Melody to do it once again while she played an instrument. Charlene responded quite well to it.

I don't know whether Charlene will be selected for the music therapy (I do hope so!!!)

21 Aug 2012

Charlene did very well with OT (Jo) in KKH today. She was sitting in a slightly reclined position (but more upright than previously) and leaning her head against Jo. As she was sitting on a swing, she could also experience some vestibular input. As she was sitting there, Jo's colleague used some toys that have music to get her attention. Charlene was able to hold her head in midline for a couple of seconds all by herself! Jo was impressed. She also told me that Charlene is activating her neck muscles as she can feel her doing so. I am so proud of my strong little girl. She is pushing herself so hard!

Recent cute pics of Charlene

Charlene smiling happily at herself in mirror

Charlene with sunflower hair clip 

Charlene saying the pledge while watching NDP

Charlene smiling at the frog that Daddy bought fr Australia

15-17 Aug 2012

Thank God that Charlene has been awake in school. She is still smiling and trying to respond in song time. Her school physiotherapist said that though Charlene lacks strength and control, she is trying hard (though she uses the wrong way) to roll herself. The fact that she is motivated to move herself is something we should be happy about. Praise the Lord! 

Her teacher came along for Charlene's occupation therapy session and was amused to watch Charlene "communicating" with the OT. Charlene made so much sounds that all of us were amused by her. Her OT also said that he can feel her muscles moving though slowly. 

Let's pray that Charlene's brain be better able to control her muscles, that her shoulders be strengthened so that she can sit up by herself and roll by herself. 

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.