Saturday, December 29, 2012

29 Dec 2012

Charlene was sleeping when we brought her on a cab to Baby Hyperstore to find her a new pram that could better fit her. She started cooing non-stop on the cab and trashing throughout the whole cab ride from Yishun all the way to Kaki Bukit. Her holidays are coming to an end and we had procrastinated on this matter for a few months.

Baby Hyperstore has got many baby strollers of different brands; Peg Pegro, Quinny, Maclaren, City Joggers etc... We tried a few that could fit her (Peg Pegro P3 Classic, Maclaren Techno XT) but they didn't have much room for growth (in terms of her height). Thus, we probably has to buy the EIO tomato stroller. We tried Charlene in her friend's EIO stroller before and there is plenty of space for growth. So even though it is expensive, it is a long term solution to move her around. Unfortunately, we do not have a vehicle and the Rodeo is too heavy and too cumbersome to keep. But the Rodeo remains the best in allowing her to sit properly.

Tuesday, December 25, 2012

25 Dec 2012

Our church (Yishun Methodist Mission) held a Christmas cum baptism service at the home of a sister from Hinghwa Methodist church. The kind lady not only kindly opened her house for our usage but catered our lunch as well. She truly demonstrated the Christmas spirit of sharing. Initially, Daddy and I were quite hesitant to go as we had to take the shuttle bus  (arranged by our church) and also we needed to feed her milk outside. But we felt that it is more meaningful to celebrate Christmas with our Lord (since it is Jesus's birthday) hence we went. It was a nice time of fellowship with brothers and sisters.



Monday, December 24, 2012

24 Dec 2012

There was more Christmas spirit for us this year thanks to the caroling by Yishun Christian Church. It was a good initiative by them. They went door-to-door to give out leaflets in our estates prior to Christmas Eve but I forgot about it. At 9pm, we heard loud cheers downstairs and pop our heads out of the window to see a group of people in red on an open roof double-decker bus. They shouted in unison that they are here for the caroling and asking us (the residents) to join them downstairs. So Daddy put an awake Charlene in the baby carrier and I grabbed a blanket and we headed downstairs. They sang a few carols, gave out a Christmas gift comprising sweets, chocolates and a CD of Christian songs and went to the next destination.



Wednesday, December 19, 2012

18 Dec 2012

After the cutting down of potassium bromide, we noticed Charlene exhibiting more episodes of straining and sudden loud cries. In the past, we would have classified them as fits. But during the previous EEG recordings, the EEG showed that they were not fits. 

Worried about the increase in such episodes, we called the hospital last week. The EEG lab tech readily helped us to arrange for an appointment with Prof Ong. We are really thankful to the EEG technologist for so promptly arranging for us this appointment.

On the advice by the lab tech, we recorded the episodes on our camera. Prof Ong saw the videos and heard our descriptions. He said that they don't look like fits to him, as Charlene do not freeze completely. To him, it sounded like Charlene was exhibiting behavioural problems, aka unhappy and crying. When Prof Ong gave his assessment, Charlene gave a loud "ummmhhhh" as if she agrees with the assessment. We were very amused.

Prof Ong commented that Charlene is exhibiting more movements, which is a good sign as it is better than being completely unresponsive. He also commented that Charlene cognitive age is probably around 3-months old. 

That is completely within our expectations, as we know Charlene's range of movements and behaviours is inline with that of a 3-month baby. But we continue to thank God for His blessings on Charlene. Every little thing in Charlene's life are bonuses to us, as we do not have any prior expectations for her. We pray that God's plan includes her complete recovery, but even if that is not the plan, we will love her as God loves us. We pray to God to bless us the strength to continue down this journey.

Saturday, December 15, 2012

15 Dec 2012

Christmas party for special needs children

Today we attended a Christmas party organised by a group of special needs mums for special needs children and their families. Our special children has been so blessed by strangers. A grandma of a special need boy offered her condo poolside as the venue, a couple kindly sponsored and catered delicious food for us and another mum made hair clips for the girls.

It was a comfortable setting and the progress of some children inspired and encouraged us on. Even looking at some other children who may be worse off, it allowed us to count our blessings of what we have in our child. Also, our children will no longer be judged according to the society's standard (milestones). Here, we celebrate every smile, every sound made, every little gesture that our little warriors can do. Our children have taught us a lot with their own strength and perserverance in their fight against all odds. They have opened our eyes to the cold reality, the selfishness of mankind. But more importantly, they taught us the meaning of true love.

It is so easy to say "I love you". But when you have to give up your job, when you have to forsake your lifestyle, when you know your efforts may not reap rewards, when your child can never care for you when you are old, when you know you might never hear your child call you mummy or daddy, eat or walk or run or do any simple thing that a normal child can do, will you still love them? Love is not just talk. My child taught me what it means to love. Now I can better relate God's love for us. "For God so loved the world that he gave his one and only Son that whoever believes in him shall not perish but have eternal life". God loves us even when we do not acknowledge him. He loves us even if we keep failing and doing wrong things. He loves us so much that he gave Jesus as a sacrifice to save us.    



Charlene wearing her santarina costume

Charlene with her "christmas hat"



Saturday, December 1, 2012

1 Dec - 14 Dec 2012

The cut in potassium bromide has yielded good and bad effects. Charlene's reaction time has improved. She will cry loudly if her needs (wet diaper, hungry) are not met. The moment the diaper is changed or milk is fed, she will stop crying immediately. Also, if she has not played enough of her music toy and we stopped playing, she will protest by shouting.

The bad news is her biological clock is totally screwed. She can be awake for 16hrs and sleep for the next 1.5days. And she tends to be awake through the night. It has really been very difficult to do anything productive with her. It is truly holidays for Charlene. The worse thing is her intolerance towards the cpap only worsens her sleep apnea.

We do not know what has caused her sleep patterns to become so erratic and whether it could be the result of a reduction in potassium bromide. Her neurologist was away on leave the whole week. Please pray that God will grant Charlene good quality sleep and that she can be awake in the day and asleep at night.

Wednesday, November 28, 2012

28 Nov 2012

Praise God!

Charlene's eeg this morning has shown improvement. Dr Ong and his junior doctor and sleep technicians viewed the video plus the associated eeg. The many episodes that she has during sleep has been confirmed by Prof Ong that those are not fits but sleep disturbances (arousals that you and I also have). Thats a huge relief for us, as we have been counting them as seizures. Dr Ong instructed us that we will work towards cutting off potassium bromide in 2 months time so that she only has one medication (epilim).

We pray that Charlene can be weaned off potassium bromide successfully and that she will have a breakthrough in her cognitive development! Please continue to uphold her in prayers that God will heal her brain and that she will not have sleep-related problems.

I am grateful to God for such great news a day before my birthday. God is gracious and kind to me despite me being so lack in faith. Just as the Bible says in 2 Timothy 2:13 "if we are faithless, he will remain faithful..."

Also want to say a big thank you to my friends from the support group for remembering my birthday and    for treating our family to a scrumptious 9-course Hokkaido meal.


Monday, November 26, 2012

16-26 Nov 2012

It has been a very unproductive first week of school holidays for Charlene. Her sleep pattern has become so erratic and totally unpredictable. Throughout the week, she has been waking in the middle of the night (don't know whether it's due to hunger or wet diaper or whatever other reason). And she is not awake enough in the day to do anything productive.

Then there is the never-ending drilling (Open-net installation) and renovation works that arouses her from her sleep. And once she is awakened (but still tired and grouchy), she has great difficulty going back to sleep. This really sucks. I spend all the time trying to get her to sleep (so I have no time for chores and any other things) but she can't sleep. Yet I cannot do exercises nor play with her as she will either be super angry or has totally no response.

Please pray for Charlene. That she can sleep soundly through the night and be awake and alert in the day.

Thursday, November 15, 2012

15 Nov 2012

Charlene had OT today. Despite having flu, Charlene did very well. She was able to hold her head up for 17 secs while in prone position on the gym ball! Well done Charlene! A new record!

Charlene also tried moving her arm to tap on the toy while lying on her side. The exercises that Jo did with Charlene were the exact same exercises that Teacher Melody has planned for Charlene for the holidays! (I didn't even ask Jo to demonstrate them). God must have a plan for Charlene.


Thursday, November 8, 2012

8 Nov 2012

Feeding Clinic

Charlene had feeding clinic today. She weighs 13.6kg and is 90cm tall. Her weight is in the 50 percentile and her height is only in 10 percentile. The dietician has increased her feeds slightly to ensure she gets sufficient nutrients.

The speech therapist said that her oral hygiene is good (to my relief). Thank God for the disposable oral swabs and for the Health Promotion Board toothbrush which Auntie Joanna bought for Charlene. The SLT didn't have any sour stuff with her and my dear girl refused to cooperate and didn't swallow the cold water in her mouth.

I also discussed with the gastro doctor and the speech therapist about Charlene's rather frequent choking of saliva incidents when she is shifted from a lying to a sitting position. I asked if it could be due to reflux. The doctor said that there is a possibility that Charlene is having reflux but an upright position should help reduce the reflux and hence choking. Both of them thinks that it might just be saliva pooling in her mouth and hence causing her to choke. Charlene was smiling cheekily as the doctor said that and that amused the doctor. She said "Look at that girl. She is saying they finally got it huh. Well done."

Meanwhile, Charlene's anti-reflux medicine dosage is being increased to better manage her condition. Maximising the dosage of the medications is the first thing to do. If her condition worsens, she might need to go for a test to determine the severity of the reflux and the next course of action. The worse scenario is to do the fundoplication again (surgery). We pray that Charlene will learn to control her sphinter muscles and that God will heal her of her reflux.

Monday, November 5, 2012

5-6 Nov 2012


Charlene went to stay in KKH today for sleep oximetry tests, which was recommended by her sleep doctor.

There has been some changes to Charlene's tolerance level towards cpap after the removal of phenobarbitone. Hence there may be a need to give her oxygen during sleep (gasp! additional equipment!)

Before that, the sleep doctor needed to find out
1. her oxygen levels when she is sleeping
2. the lowest that her oxygen level will fall to when desaturation occurs. This will in turn determine whether Charlene needs to be given oxygen when she is sleeping.
3. the carbon dioxide levels when she is sleeping

The results showed that Charlene continued to have desaturations when she was sleeping; 5 per hr. This has improved since the last test where she had 7 per hr. The good news is even though her oxygen levels dropped, the drops were not critical. Her lowest oxygen level during sleep was 91.
Also, her carbon dioxide levels were normal which meant that even without the cpap, there would be no adverse impact.

So the sleep doctor recommended that we continue to use the cpap. If she cannot tolerate, we can take it off as she will be fine.

We thank God for the reassuring news! And we thank God that we were discharged within a day! (we were prepared to stay till Wed, but our prayers to God worked!)

Continue to pray that God will heal Charlene's sleep apnea. The cpap has lost its effectiveness due to Charlene's mouth breathing. Yet, we can't change to a full face mask as there is a high risk that Charlene will choke on her secretions when she is sleeping. Hence, we are out of options to help Charlene and can only rely on God's healing.

Saturday, October 27, 2012

27 Oct 2012 - Charlene's birthday celebration 3

Our uni friends came over to celebrate Charlene's birthday. Thank you Milie, Yizhen, Anne, Joanna, Zhisheng, Wanfen, Shiyun and June for the angbao or present and for your love, care and concern for Charlene. Didn't have many pics as Zhisheng, the professional photographer took them...We managed to catch up with them, as we talk about everything under the sun. We thank God that our friends specially came down for our sake, despite the inconvenience for them.

Doraemon cake from Polar

Charlene smiles when cut cake


Daddy n Mummy bought a ukulele for Charlene



Friday, October 26, 2012

26 Oct 2012 - Charlene's birthday celebration 2

Charlene's birthday celebration with church friends

Today, our church friends came to our place to celebrate Charlene's birthday. Daddy and I did a simple decoration at home. We thank God for His presence. We left earlier from combined cell teaching and managed to hop in a cab shortly. Immediately after we reached home, the caterer came. We ordered a convenience mini-buffet from Select. The food was good and it was convenient as everything was packed in disposable containers and there was no need for the person to come and collect them back.

Charlene was a little tired but she knew that aunties and uncles came specially to celebrate her birthday for her. So again, she cooperated till everyone left then she slept.

We want to thank everyone for their ang bao and/or presents for Charlene. We are really blessed to have such supportive church friends who have walked with us throughout the 3 years of Charlene's life. Thank God for directing us to find YMM.






Wednesday, October 24, 2012

24 Oct 2012 - Charlene's bday in sch

Charlene's birthday celebration in school 

Charlene was very excited and was awake at 2am. Poor little girl was so tired by the time we reached school. Charlene's teachers gave her a nice surprise. They decorated a noticeboard with the words "Happy Birthday Charlene".

Charlene was a little irritable as she tried to kick herself off the bench due to her tiredness. But once we started singing the birthday song, she appeared visibly happy. She also opened her mouth big big when we told her to blow the candles. Despite her tiredness, she stayed awake for her music and physio session (perhaps knowing that it is her last session with Teacher Melody). 




Saturday, October 6, 2012

6 Oct 2012 - Karaoke

Daddy hasn't been to karaoke for 3 years; ever since Charlene was born. I went 2 months back during my off-day with Milie. Milie is so nice to travel all the way to Yishun to sing karaoke with us. Because we didn't know who to entrust Charlene with, we brought her along. Initially, she was pretty furious in her pram. But after we carried her, she was ok. There were songs where she looked like she was listening attentively and concentrating really hard. Daddy says that when Milie and I sang duet, Charlene looked amused. One very interesting thing happened - I asked Charlene whether Daddy can sing and she responded with a loud sound. Then I asked Charlene if I can sing and she kept quiet. Clever little girl!

Friday, October 5, 2012

5 Oct 2012

Charlene suddenly had 2 huge blisters on her fingers. I was so afraid that she got hand, foot, mouth disease. We took her to the pediatrician. The doctor was surprised that the blisters appeared suddenly and are so huge. Dr says bacteria infection. Luckily not hfmd. She burst the blisters and gave us some alcohol swabs, anti-bacteria cream and oral antibiotics.

Wednesday, September 19, 2012

19 Sept 2012

Charlene made purposeful actions in school today!

As usual during circle time, Charlene is to raise her hand to count to three. She normally would just smile happily at her teachers. But Charlene tried super hard today and managed to lift her wrist! She still lacks the strength and muscle to lift her arm but it is progress! So she did that a few times...

Then at the start of her combined music therapy and physio session, Charlene turned her head from left to right in respond to the drum that her music teacher was playing. And she tried super hard to turn her head to from the right to the left too. So her physiotherapist worked with her head control while the music teacher used different instruments to motivate her. Charlene was so happy when the music teacher played the guitar and sang song, encouraging her to shake the bells tied to her wrist. There were a few times where she jerked her arm in response (She lacks control but she really knows and she wants to move!)

Her teachers are really pleased with her progress. Thank God for His blessings upon Charlene! 

Wednesday, September 12, 2012

12 Sept 2012

Charlene did her eeg at Nuh this morning. We thank God that we managed to capture data of her sleeping (with and without cpap) and awake. She had a few strained faces and turning of head. The Nuh eeg technologist is a really nice lady. She would answer the questions that we asked. When we voiced out that we aren't sure if those are fits, she said that it doesn't seem like it.

Her interpretation is confirmed by the neurologist. Prof Ong explained to us that those are not real fits. Basically, Charlene's brain is full of activity even when she is sleeping. Her brain is overworked so much so that it has to force shut-down. An analogy would be when we open too many programs on the computer, causing the computer to hang and force shutdown. This explains why Charlene is so tired all the time as she is not truly resting even when she is sleeping. Even though they are not real fits, but because they happened all the time, it is damaging to the brain.   

Though this may not seem like good news, but we are thankful that for the first time, we finally have some knowledge of what is happening to her. The plan is to increase the dosage of epilim (one of the anti-epilectic med that she is currently on) to an effective dosage and then do another eeg to see if there is any improvement. We are going to increase the dosage very slowly; 0.5ml every two weeks so it will take months. Please pray for Charlene that the effective dosage of epilim will be effective in controlling her fits. 

In the event that the effective dosage of epilim proved to be ineffective, Prof Ong suggested adding a new medication that Charlene has not tried before (he said to try those that are less drowsy first). 

For the past few days, Charlene has been more responsive and the increase in muscle tone has been obvious. She is better able to hold her head when sitting and even when in prone. We thank God that we could remove phenobarbitone from her life forever.

Charlene sitting on her own for 20 mins



Saturday, September 1, 2012

1-8 Sept 2012

After 3 weeks of cutting phenobarbitone, we finally weaned it off completely. Some changes that we observed in Charlene; she became more awake and aware. Her eyes opened so big that she look more like me than her Daddy now. She also suddenly realised her rights as a kid. She will whine until she gets what she wants (Argh, but because she can't talk, we don't know what she wants).

However, becoming more aware probably also throw her sensory system into chaos. She is easily startled by sudden loud sounds and touch (something that we thought she has gotten over with) We think she needs some time to adjust to the absence of the medicine.

And for don't know what reason, her biological clock went crazy again. She has been awake through the night and asleep through the day. That is taking a toil on us really...

Wednesday, August 22, 2012

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!!!)






Tuesday, August 21, 2012

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!


Monday, August 20, 2012

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

Wednesday, August 15, 2012

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. 


Tuesday, August 14, 2012

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.

Tuesday, August 7, 2012

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. 


Sunday, August 5, 2012

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.

Monday, July 23, 2012

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.

Sunday, July 22, 2012

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. 

Saturday, July 7, 2012

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!

Thursday, June 28, 2012

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.



Monday, June 25, 2012

25 June 2012

School starts again. Wow, the whole month of hols just fly by so quickly.

Charlene slept at 3am this morning. I was quite concerned that she will not be awake for school. Anyway, I brought her along. She heard the teachers calling her, talking to her and opened her eyes for a while. When we started singing "Good Afternoon" song, she smiled happily with her eyes closed. Then she dozed off. And finally woke up when it was her time to choose toys.

Thank God that she is awake. We managed to do feeding. And even go for hydrotherapy. As the swimming pool was not heated, Charlene whined non-stop for 20 mins in the pool. She managed to kick her legs twice v haphazardly.

Friday, June 22, 2012

22 June 2012 - Charlene healed of her heart condition

Charlene had her cardiology appointment today. Great news! God healed her of her heart condition. Previously, Charlene's right heart muscle was mildly thick (thicker by 1mm as compared to the norm). But the 2-D Echo scan today showed that everything was normal. The doctor cannot explain how it happened. But he was delighted to discharge Charlene from the cardiologist clinic. Praise the Lord!!!!!

Tuesday, June 19, 2012

19 June 2012

Charlene woke up while we were waiting for the geneticist's appointment. She was in a great mood. She smiled happily at Dr Tan and even responded (by cooing) when Dr Tan spoke to her. Dr Tan had never seen Charlene respond and behave in this way. She was quite pleased with what she saw. So was I. Ever since Dr Natalie left, Charlene had not smiled at any other doctor. We have ordered for Qunol liquid coenzyme Q10 to be shipped from US. We will give this a last try (those sold in Singapore are in powder and softgels and are difficult to feed).

Charlene did v well in OT today. Jo is very satisfied with her performance. Jo sat Charlene on the swing again (this time in a more upright position - look at first video as compared to the previous appointment - 2nd video) and Charlene showed more neck control. There is slight improvement in her head and neck control. Jo likes Charlene's awareness and responsiveness towards the toy that makes loud animal sounds.

Well done Charlene!!!


Sunday, June 17, 2012

9-17 June 2012

Charlene's biological clock for no reason shifted again. She started waking up at 7pm and it will slowly shift. So it took her a week to shift back to a morning clock. This morning she woke up at 7am and smiled happily throughout worship in church.

Daddy and I joked that Charlene must be waking up to watch Euros (soccer). But we don't even subscribed to it. Hahaha...

Thursday, June 7, 2012

7 June 2012

Charlene had a great OT session today with Auntie Jo. She was awake, alert and responsive. Charlene enjoyed herself on the swing today. No wonder she likes Auntie Jo. I like Jo too. She is really good at using play to achieve all the learning objectives. She made Charlene so happy and yet at the same time Charlene is doing head control exercises and strengthening other muscles as well.

Wednesday, June 6, 2012

6 June 2012

Charlene saw the ENT doctor today who checked her nose and tonsils. There was nothing really wrong with Charlene's nose except a little sensitive and her tonsils are ok too. The Eye Dr has previously referred us to see if her persistent and excessive eye discharges have got anything to do with the structure of her nose. Also the Sleep Dr has wanted us to check if Charlene's tonsils are too big which could be a reason for her worsened sleep apnea. But the ENT Dr has ruled out both.

Charlene closed her jaws super tight when the ENT Dr wanted to put the ice-cream stick in to check. She whined and complained at the Dr who sprayed things in her nose and put a fat scope in to X-Ray her nose...

Saturday, June 2, 2012

2 June 2012

After a few days of inverted biological clock, Charlene finally got it right again. She was awake at 7am this morning. Daddy and I were going to have breakfast so I sat her in rodeo and did some sensory play with her; letting her touch a slice of wholemeal bread and cheese and lettuce and telling her that Daddy and Mummy are having sandwiches for breakfast. After breakfast we brought Charlene down to Yishun Park for some sunshine in her rodeo.

We tried to let Charlene play with the slide at the playground below our house but the slide is too steep and it was difficult to let Charlene play. After bath, Charlene had milk. At the start of this hols, I brought back the electronic organ that my brother had. We had been introducing new instrument sounds to her daily. So while she is resting after milk time, I would search youtube and play her the music made by that particular instrument for the day. Afterwhich I would find an opportunity to sit her in front of the electronic organ and choose the option of the same instrument sound to play a few songs. Charlene really likes music; can tell from her face that she is listening attentively. And quite consistently, once the music stops, she will make noise.

We have listened to trumpet, harmonica, flute, harp, violin, drums, pipe organ. I never knew that music from harp is so beautiful.

Also found some educational songs singing about shapes and colors etc.

Tuesday, May 29, 2012

29 May 2012

We saw the sleep doctor today. The statistics of Charlene's sleep is not too well; rather high level of obstructive apnea and also some central apnea. The nice salesman saw the stats and gave me his few cents worth. The high OA might be due to Charlene still using her mouth to breathe rather than her nose and once her mouth is open, the pressure "escape", causing the cpap machine to be ineffective. The solution to this is to change her nose mask to a full face mask. The doctor think so too and orders for a sleep oximetry test before taking any action. However, the danger of the full mask is that Charlene can choke to death on her vomitus or drool as the mask covers her mouth and doesn't allow the vomitus or drool to trickle out. The moment the doctor suggested a full face mask, Charlene immediately choked on her saliva while sitting in her pram. I don't think a full face mask is an option for Charlene due to her inconsistent swallowing and excessive pooling of saliva in her mouth.

Other possible reasons for the bad OA score could be due to the pressure not being sufficient. Action can only be taken after the doctor has determined that it is the case. Last possible reason is central apnea - meaning her inability to sleep well is due to her brain.

While doing the sleep oximetry test at home, there were times that the oxygen in her blood can drop to below 90 but it is still above 85. Got to wait for the doctor's analysis.

Please pray that Charlene will learn to close her mouth and use her nose to breathe when she sleep so that the cpap machine can be more effective in helping her in her sleep.

Monday, May 28, 2012

28 May 2012

Thank God that the Rodeo Chair has arrived! After much modifications (a big thank you to DnR and Teacher Kartheek), it can help Charlene to sit properly (in a 90 degree sitting posture). Can let Charlene sit and do some activities.



Sunday, May 27, 2012

27 May 2012

Thank God for His providence! I was asking my tuition boy's mum whether she has any lobang to buy cheaper foam gym mat. And she managed to get second hand free from her friend. On top of that, her friend also gave 2 pieces of lycra cloth (will discuss with school OT to see if it's feasible to make into a lycra swing), some tactile animal toys and a storybook. And my tuition boy's mum was so kind to drop them off at my place on a taxi on her way home from church. I am really grateful! The gym mat would have cost $200.

Thursday, May 24, 2012

24 May 2012

Charlene was smiling throughout OT today. Her therapist was very happy. Charlene even rolled on the ball without being too upset. All thanks to the distraction from her favourite toy train. Charlene was put inside the lycra swing and the OT played with her with her hands in midline and her hands in the middle

Wednesday, May 23, 2012

23 May 2012

During soft play today, I left Charlene lying on the slide and tell her to slide herself down. Teacher taught her that she has to move her butt. Charlene did just that for the first 2 slides and went down by herself. The third time, Charlene started jerking her head backwards and arching her body so that she would slide down faster. It is amazing how fast she can learn all these incorrect things. Hahaha... 

Once more, she was whining to her physiotherapist through the session....

Monday, May 21, 2012

21 May 2012

Charlene was standing in her stander for 20 mins in class. While she was standing with her arms on a table, her teacher wanted her to feel the ice cubes (which has some texture on it). Charlene had such a reaction that she pushed the whole tray away. She also vocalised and indicated that she doesn't want to play with it. Good awareness Charlene!

Friday, May 18, 2012

18 May 2012

Charlene's biological clock shifted again and she was sleeping through the day. I decided to bring her to Nuh by taking the Mrt. We had to change to the Circle Line at Bishan. There was a little inconvenience as I had to look for the directions and the lift. However, the MRT trip only took 40mins. And I spent a total of $6 (including taxi fare from my house to Yishun MRT) as compared to $24 (cab fare from my house to Nuh). It was huge savings.

It was a rather long wait to see the dr. The junior dr was very nice and I liked the fact that he was honest and sincere. He knew it was beyond his capability as Charlene's case is complicated. He was very nice to call his mentor who was even nicer to come down specially to see Charlene even though he was not running a clinic that day. To us parents whose children are special needs, a doctor who has a heart is very important.

Monday, May 14, 2012

14 May 2012

Charlene had her annual eye check today. Structurally, everything's fine but the eye dr is again unsure whether she can see or not (cortical visual impairment; i.e. the neurological connection between the brain and the eyes).

However, after a year, it seems as though Charlene's long-sightedness (meaning she can't see near) has not improved. So the dr asked if we would like to make spectacles to see if it helps Charlene to see better. Her left eye is 600 degrees and her right eye is 200 degrees. I decided to try it out since it may not be that expensive.



Wednesday, May 9, 2012

9 May 2012

Charlene's fever is gone. Her body should have successfully fight the infection. But the diarrhea was persisting and it has been 6 days. I was hesitating whether to send her to the hospital for a precautionary check. It could mean spending additional $200 or worse being admitted and spending additional $ and exposing her to more germs and viruses. My friends from the support group told me to go. So, I prayed about it and decided to bring her.

Nuh children A&E was rather empty when I reached. After hearing me, the doctor concluded that it should be viral infection. The diarrhea might take a couple more days. He prescribed probiotics and another medicine to harden stools. God then provided an opportunity for us to seek a second opinion by helping us with a referral to see the nuh neurologist. When we got out of the doctor's room, the waiting area was packed. After collecting the medicine, we left. The man at the door was shocked when I asked where is the taxi stand. He asked if I have seen the doctor. Thank God, it only took us 45mins and the trip achieved its purpose.

Monday, May 7, 2012

7 May 2012

Charlene has not been well for the past few days. It started off as diarrhoea on Friday. Her diaper leaked twice in school. But after 4 times of poo, she stopped. We thought it was just stomach upset. On Sat, we bought some probiotics from Guardian and gave her. She poo 3 times, vomitted twice and has mild fever on off.

This morning, she vomitted twice and has poo 4 times. And her fever went up to 38.9 and came down after giving panadol and ice pillow. She has a lot of phlegm in her throat and has been coughing.

Please pray for Charlene's recovery and that her lungs will be protected.

Friday, May 4, 2012

4 May 2012 - Love Gift

We thank our fellow brothers and sisters in Christ for their love gift to Charlene. We thank them for their thoughts and prayers for Charlene. Indeed, just last week I was shocked to receive the quotation for the tumble-form stander which cost USD3.4K. Was still considering and deliberating whether to purchase it or not. So the generosity of our fellow brothers and sisters in Christ came in handy and will be able to pay for the subsidized amount for the stander. God is truly our Provider!

Wednesday, May 2, 2012

2 May 2012

Charlene is normally quiet in school. Only when she is on the slide then will she make a lot of sounds. I have ruled out the possibility that she is cold by wearing a jacket for her. Nowadays, we don't do counting anymore. I just put her on the slide and tell her to slide down herself. She tried and does manage to slide down herself. Then she will make a lot of sounds to suggest she wants more. 

Charlene doesn't "talk" to her other teachers, Her PT is really priviledged. Charlene is talking to her non-stop throughout the session. I thank God that Charlene responds to sounds and lights and her eyes will follow the source, just got to help her a bit and she will turn her head as well. 

Tuesday, May 1, 2012

1 May 2012

It was rare that Charlene is awake in the morning. So we decided to bring her out for some sunshine and have a hearty family breakfast. We put on her new sunglasses for her and she was obviously less affected by the sunlight. She looks really cool in it. But we were getting a few stares from passerbys. Hahaha.


Afterwhich, Charlene fell asleep before we went to our church friend's house for housewarming. So Charlene was sleeping soundly on the sofa and Daddy, Mummy had a chance to make popiah together and had fellowship with church friends.

Sunday, April 29, 2012

29 April 2012

This morning we brought Charlene to Suntec City Mall to attend her friend's first year old birthday celebration. Charlene must have been too excited again and didn't sleep till 3am last night. So, she was sleeping through the party which was sad (cos all the children were awake except for Charlene).


Thursday, April 26, 2012

26 April 2012

Charlene had her physio session at KKH this evening. She was responsive and quite happy. She made her Daddy, Mummy and therapist very happy indeed.


Wednesday, April 25, 2012

25 April 2012

Charlene was awakened shortly after her class started. Just as she was about to enjoy herself in her favourite songtime, the senior teacher came in and took over from me. She wanted Charlene to do some work and so did not support her head fully. This clever girl refused to cooperate and was in defiant mode with her head hanging down and hands dropping off the teacher's legs. She did choose the toys that she preferred.

In the playroom, I refused to help her down the slide and she used her leg movements to "slide" herself down the slide. And she whined loudly to indicate that she wanted more (so that I will carry her to the top of the slide again).

Her physiotherapist wanted to help her in her breathing and articulating. As she was working on Charlene's head control and bringing her rib cage down, she was also engaging in a conversation with Charlene. This little girl will make sounds and sighs to "communicate" with her therapist. Using this way of communication, she "told" the PT she wanted 2 angry bird stickers and which one she wanted. I was very amused.


Monday, April 23, 2012

23 April 2012

Thank God for the hot weather today! Charlene managed to go for hydrotherapy. I put the baby neck float on her and she was able to float by herself in the water. So besides doing the hydro exercises, I took her hands and made her do frog style. Her body and legs were just floating along (her teacher said she looks like a puppy). It was the first time that Charlene is so relaxed in the pool and she did not whine at all!

P/S: Wish I could have taken photos or videos but I was in the pool with her.... ;(

Saturday, April 21, 2012

21 April 2012 - Cleansing stream retreat

This post is by Dez on behalf of our family, testifying to God's goodness and reassurance for us at the cleansing stream retreat.

Originally me and Mummy didn't expect much from the retreat as we are physically tired from the caring of Charlene. Also we didn't know whether she would kick up a fuss for long hours outside home. On Friday evening, we wondered whether we made the right decision to attend cleansing stream together; it may have been better if we rejected our cell leader suggestion and attend it individually a year apart.

But God's way is higher than our way. He has His own plans for us.

We were late for the Friday retreat so we missed out the worship, the part that we were most looking forward to. After we had settled Charlene in a separate room, we had missed out part of the workshop. The 2 of us didn't expect much as we took our assigned seats.

As the session went on, I felt a strange tugging of the heart. It was subtle, a strange nagging feeling that I usually get after a lifting worship song. It was strange as I missed the worship and the sharing of the Word was something I already knew about. The only reason I can find is that the Holy Spirit was present in the room. (post event, I asked Mummy how she felt about the evening retreat and the first thing she said is that she felt the Holy Spirit presence). The sense of the Holy Spirit lifted us, and after the retreat, me and Mummy spoke about our spiritual life till 1am.

More was to come from God on Sat retreat.

Nancy, my intercessor for 2 of the session, came up to me and asked me whether she can pray for Charlene. I was not at all surprised because I know she saw that Charlene milk was tube-fed. I agreed and asked her to do it later, together with Mummy.

During the lunch break, Nancy came in with Kim and prayed for our family. They prayed for Charlene healing, for Charlene to 'wake up from her slumber', for 'angels to come and give us respite', for 'release about worry on finances'. We were stunned because the contents of their prayers were exactly what we struggled with. And me and Mummy only told them that we struggled with family responsibilities, with no mention about the difficulties we are facing. We knew that God was telling us that 'He cares about us' through Nancy and Kim.

It was God's plan for our cell leader to nudge us into participating in the cleansing stream together, for Nancy to be my intercessor, for Nancy and Kim to pray for us and Charlene, and for them to pray for what our hearts yearn.

Thank you Cleansing Stream ministry for the 2-day retreat.

'No eye has seen,no ear has heard,no mind has conceived what God has prepared for those who love Him.' - 1 Cor 2:9.

Friday, April 20, 2012

20 April 2012

Charlene had her rodeo chair fitting in school today. She was quite cooperative. We thank God that DnR is doing all the customisations and adjustments to ensure Charlene's needs are fulfilled. Now we just need to be patient and wait another 4-6 weeks for the new one to be shipped in from US.


Monday, April 16, 2012

16 April 2012

Charlene woke up in the middle of her sleep and smiled happily at us after being carried.


Sunday, April 15, 2012

15 April 2012 - Charlene at symphony orchestra concert

Charlene was sleeping through the day. However, the moment we boarded the taxi, she immediately woke up and smiled happily at me (though she fell asleep halfway through the journey).
She really likes car rides. We were on our way to our church fund-raising event - Elite symphony orchestra concert.

Charlene awakens at the start of the concert
Before the concert starts, Charlene was still not awake. We were mulling whether to leave her in her pram or to carry her. Daddy was telling me "Since she's not waking up, let just leave her to sleep in her pram." Almost immediately, Charlene 'forced' herself to wake up.
During the symphony orchestra performance, she was awake and listening attentively, showing different expressions on her face as well. It was nice watching her in the midst of noisy kids and teenagers. Twice after the music stopped and the emcee was introducing the next piece, Charlene made a sound "Er...". She wanted more music. At the closing prayer, she again said "Er".
We thank God that Charlene enjoyed herself as we did too!

Sunday, April 8, 2012

8 April 2012

I held Charlene's hand to color and draw a birthday card for my friend. Charlene didn't manage to choose the colors despite me using the same trick previously. She only chose once - the blue color for the balloon that was drawn with her name instead of pink.

After we brought out the cake and sang the birthday song for my surprised friend, Charlene made a sound. That reminded me of the birthday card. She might be upset that I have forgotten to give Aunty Audrey the card that she "had made". What a clever little girl!

Wednesday, April 4, 2012

4 Apr 2012 - Charlene recognize her photo

Charlene woke up at 5am and went to sleep at 1030am. I was struggling whether I should bring her to school (starts at 1pm). I am glad I brought her there. When the bus turned into the school, Charlene woke up. As her classmates haven't reach yet, Teacher Adeline could afford to spend more time waiting for Charlene to respond.

The teacher is training Charlene on the use of a communication device. At the count of 1,2, Charlene is to raise her hand and pressed a buzzer which would say 3 on her behalf. She did that twice. Teacher Adeline put Charlene's left hand on her photo and her right hand on her classmate's (a boy) photo. Charlene surprised all of us by swiftly dropping her right hand. Her teacher was very impressed as this is the first time that she has done 'this exercise' with Charlene and she wasn't sure that Charlene is up to it.

Thank you Jesus! Glory be to God, our Father!
We are really pleased that Charlene can smile, can recognize her parents and herself, can understand what is being said and can indicate her preferences (through choosing and whining). It is a miracle considering what the neurologists said about her being a vegetable, unable to recognise her parents.

Saturday, March 31, 2012

31 March 2012

We attended a gathering for parents with special needs children. The atmosphere was relaxed. It was good to see everyone coping and having a life despite the very tough difficulties faced handling our special needs child. It was great to meet people who testify to God's goodness. A 5yr old girl was weaned off her peg last year. These stories encouraged me to continue to perservere in the therapy exercises.

Charlene woke up after half the people have gone home and smiled happily. Auntie Carmen tried a couple of times to get Charlene to smile and succeed each time when she says "Pretty girl". Charlene also smiled happily at the hosts; Kenneth and his wife.


Friday, March 30, 2012

30 March 2012

Charlene's ot in school praised her for being a good girl today. Charlene was awake and responsive and was quite cooperative during the therapy session today. She also enjoyed her time in the multi sensory room.

Wednesday, March 28, 2012

28 March 2012

Charlene woke up in time for her physiotherapy session in school. Today the PT made a discovery. Charlene uses her diaphragm muscles to breathe when she is lying down. However, the moment she sits up, her diaphragm will fall further down by gravity. Because her rib cage muscles are weak, her breathing become swallower as a result. This explains why when Charlene sits up, she tends to close her eyes.

Monday, March 26, 2012

26 March 2012 - Charlene and Winnie the Pooh cartoons

Three days ago, I decided that when Charlene is doing her neurosuit training, I would find something meaningful for her so that she can understand why she should sit up. At the same time, I need to find something that will keep my time too so that I won't be so bored that I fell asleep. Thank God for providing me with wisdom. 

So while Charlene is sitting in her neurosuit in front of the mirror (so that I can see her), I am behind her (just imagine me to be the chair) so that when she is tired, she will lean her head on me (my hands are not holding her head unless she becomes tired and unstable). I put the laptop in front of us and started with Pooh's Heffalump Movie on Fri. I wasn't sure if Charlene was watching. But she was not upset and doesnt look bored or stressed. So I enjoyed myself. Yesterday, we watched the Tigger Movie. 

And today we watched the Many Adventures of Winnie the Pooh. Charlene was able to sit and hold her head by herself for a prolonged duration of 15mins! Praise the Lord! We took a 5mins break at the half hour mark and continued. After an hour (which is normally Charlene's max tolerance for neurosuit training), I took her off the suit and she was visibly happy. Wanting to reward her, I carried her in my arms but she started to be upset and struggled to get out of my arms. I thought perhaps she wanted to finish the show (there was 10mins left). So I sat her up again (this time with my hands holding her head) and she kept quiet immediately. We finished the show and I put her back in her bed. She started being upset again. Dez and I were very happy! Charlene wants to watch cartoons! 

Thursday, March 22, 2012

22 Mar 2012 - Charlene and her jumbo color pencils

I bought Charlene a box of jumbo color pencils. So today I told Charlene that we are going to make a "welcome back" card for Daddy. Initially, I put two color pencils; one on Charlene's left hand and the other on her right hand. I told her that she can choose the color she wants by holding on to the color pencil and dropping the other one. At the start of the 4th round, Charlene had blue color pencil in her right hand and another color (I can't remember) on her left hand. So I said "Charlene, let's use blue color to write the word 'Daddy'. Daddy likes blue color". To my surprise and amazement, Charlene held on to the blue color pencil and dropped the one in her left hand. I was unconvinced. So this time, I purposefully put the yellow color pencil in her left hand (her weaker hand) and another color in her right hand. I told her that I needed yellow so that the card will look more colorful! After 20 seconds, Charlene let out a loud whine, raised her right hand and drop the color pencil. She held on to the yellow color pencil in her left hand! Wow!!!

Praise the Lord! Charlene understood what I was saying. And she knew about colors too! God must have been teaching her!

Monday, March 19, 2012

13- 19 March 2012

It' the March holidays and Charlene took full advantage of it. Her biological clock turned upside down again (What Sarah's colleague described as "going to Saudi Arabia" as Saudi is 5 hours behind Singapore).

So Charlene slept in the day and will be awake through the night. We really cannot stay awake to do anything with her. So she ends up lying on her bed through the night and not really doing anything productive. Sigh.

And then on Sat, when I came back from tuition at 5pm, Charlene was awake. She didn't sleep and couldn't get to sleep despite being carried. Each time she fell asleep, she was jolted up by her fits. This happened a couple of times. She didn't sleep till Sunday 630pm after her Daddy had left for the airport for Perth. So she broke her record for being awake for 25 hours! Perhaps, she was scared that she couldn't wake up in time to say bye to her Daddy. We thank our cell group for their concern for Charlene and praying for her.

Then cos she was overly tired, Charlene slept from Sunday 630pm and only woke up on Mon 1155pm. a total of 30 hours.

Thank God that she did some sitting and was awake for that half an hour during hydrotherapy.

19 March - 23 March 2012

I thank God for His grace for the whole week that Dez was away in Perth. I thank God for blessing Charlene and I with good health. And for granting me strength to stay awake at night to feed Charlene milk. I also thank God that Charlene woke up at the right time for neurosuit training in kkh. I also thank God for my parents who came to visit me and provided me with food.

Monday, March 12, 2012

This is how we feel too... (sometimes)

(Note: specific mention that this post is written by Dez).

This is how I feel (sometimes).


This is how my wife (sometimes).


Charlene and her mummy is waiting for me to help out with the neurosuit training, so i will follow up my thoughts later...

Sunday, March 11, 2012

11 Mar 12 - Charlene responded to question about personality...

As per our weekly routine, our whole family went to church to worship and praise God. Because we were very tired from yesterday wedding, our whole family woke up late. We missed the bus and had to rush down in a cab; we didn't want to miss the worship because its a weekly event that we look forward to.

During the sermon, the pastor asked a question to the audience. He asked those who are extroverts to raise their hands. Immediately after pastor asked the question, Charlene let out a loud cry! The church friends around us were amused and said "yes Charlene, we know you are an extrovert". Haha, which indeed is the case... Charlene likes to be around ppl, and enjoy ppl's company. She's not afraid of strangers and likes to listen to ppl's conversations.

Saturday, March 10, 2012

10 Mar 12 - Wedding & Record breaking

10 Mar 12 is the wedding ceremony of our church friends. The couple invited us for the church ceremony at Hakka Methodist Church and a wedding buffet lunch at Sheraton Towers hotel.

The wedding was a simple but solemn affair.  As we know both the couple, we are glad to see God bringing them together. We pray that Lord Jesus will be in their relationship and help them be strong and loving.  

Charlene missed out the whole wedding ceremony altogether and only woke up at the photo taking session. When we went to the hotel for the buffet, she was wide awake, but very calm and quiet. Some of our church friends helped us to look after Charlene so that we could take turns to get our buffet.

The buffet was good! International buffet... the oysters were fresh, the sashimi was good, the chocolate deserts were fantastic and the ice-cream was good quality...! I haven't had such a good buffet for a looonnnnggg time, so it was a blessing to enjoy a good meal among friends. Thank God!

After we reached home, we made use of the evening time to do exercise for Charlene. Managed to do standing and sitting with neurosuit. And Charlene broke her record of holding her head without any assistance! She held her head for 30 minutes! Praise be to God!

Standing was tough, cos it puts a lot of pressure on my knees. We decided its worth while to get a stander.

Thursday, March 8, 2012

8 March 2012

Thank God for today as everything planned has been accomplished despite delays. 

Thank God for a taxi immediately after I went downstairs. The driver was very patient and nice too. After waiting for 30 mins, Charlene had her button changed. The nurse was amazed that Charlene's mic-key button lasted for more than a year. She said many people's mic-key buttons only lasted a few months. I told her the doctor ordered me to change it. Well, it is really a little dirty but if not necessarily, you won't change it because one set costs $177. Anyway, thank God for the skilled nurse. She replaced it so fast that I did not even catch a glance of it. Charlene is a strong little girl. She only whined and did not even cry. 

Afterwhich we went to the Feeding Clinic. I was very pissed. I felt that the SLT is not value-adding in any way and I am just wasting my time and effort seeing her. She cannot even ensure that Charlene's sitting position is optimal then asked me to feed her. How do you expect Charlene to swallow when she is in a reclining position? Obviously she will cough and choke. Rather than holding Charlene, she was pushing my pram to an upright position (if it spoils, it's definitely her fault) while it was obvious Charlene was still reclining. Then, after Charlene coughs and chokes, she took prune puree and gave me half a spoonful of it and ask me to feed Charlene. I was aghast. This was the same SLT who told me not to give her anything via spoon and if I want to give her pacifier, must perform suction before and after. And now, after Charlene chokes and still in a very bad position, she wants me to spoonfeed her?!? I was infuriated. I used my left hand to hold Charlene into a 90 degree sitting position and used my right hand to feed her. Then I told her straight in her face "See, she is swallowing". Faint ah..

Charlene is a good girl. She did well in her physiotherapy session in her neurosuit. She sat by herself with arms resting on the bench. She also stand for quite a well. We are really thankful to God for providing us with the second hand neurosuit. According to the PT, the neurosuit company did not get bk to them anymore and there's no news of the new neurosuits.... 




Wednesday, March 7, 2012

Joshuas n their Fathers

Read the previous post on God Provides. So I had two tuition students whose names happened to be the same - Joshua. So on Wed night, I started a new tuition with a girl. And after chatting about her school etc, I discovered that her chemistry teacher is called John. The description fits into one of the Joshua's father. What is amazing is that the first Joshua's father name is also called John. This is really too much of a coincidence. What are the chances that you know 2 tuition students with the same names and whose fathers' names are the same too? Wow!

Monday, March 5, 2012

5 March 2012 - Charlene broke standing record

Thank God for a productive day in school

Charlene's classmate was late so the teachers brought us to the class next door. Charlene loves crowds. She was smiling so happily. 

Charlene was awake and alert during feeding exercise. She did very well in her feeding exercises. The speech therapists were so delighted to see her so awake and responsive. They have not seen Charlene showing awareness of people talking and were pleasantly surprised. They were also happy to see Charlene being so cooperative as she was positioned in the buggy. In the end, the therapists were satisfied with their positioning of Charlene. 



As it was raining the whole morning, I decided not to let Charlene go for hydrotherapy as I don't want to risk her catching a cold. Instead, we decided to put Charlene in a stander. She hasn't done any standing for 2 months since school re-opened. I suggested to Teacher that we bring Charlene out to the corridor to see the painted wall. Charlene was quite cooperative as she listened to her Mummy "lecturing" on the various sea animals in the sea as painted on the wall. We didn't realize that Charlene stood for 30 mins! She broke her standing record as she has always only stand for 10 mins and will start whining. 

Back at home, we had a good one hour with the neurosuit training. 

I was very pleased and happy with Charlene and thank God for His grace! 

Wednesday, February 29, 2012

God provides

I thank God for His providence in terms of finances. After an appropriate break from the last assignment in Sept last year (afterwhich my grandma fell v ill and eventually passed away), I was given an altogether new task and an opportunity to get to know IB economics syllabus. I thank God for Joshua's (my tuition boy) mum who understood the difficulty of handling a special needs child as Joshua's brother is autistic. That covered some of my monthly insurance premiums but it was still short.

Then recently, I have been easily affected whenever I see normal children. I find myself asking many questions; why, when....

God's response came in a way I never expected. I took up another assignment from an agent. I thought it was a female student as the name and number given to me was that of Joscelyn. When I reached the house, then I found out that my second student is also called Joshua.

Mere coincidence. Just how many Joshuas are there in Singapore? Anyway, I thought hard about it. Perhaps, God wanted to encourage me through the Bible character Joshua who chose not to believe in what he sees (powerful enemies in greath strength) but trusts that the LORD will lead Israel to victory. Similarly, if I choose to believe in my eyes and what I see of Charlene as of now, I will only feel despair and lose hope. However, I should follow Joshua and trust in God and put my hope in Him. One day, I will also reach the Promised Land just as God led Joshua and Israel into the land filled with honey and milk.

I thank God also for my friend Wanfen who remembered me and helped me to get a third student who is willing to come to my place. At least for now, it is sufficient to cover my monthly insurance premiums leaving the savings intact.

Thank you Lord Jesus!

Tuesday, February 28, 2012

28 Feb 2012 - Charlene sits by herself in neurosuit

We have been trying to do the neurosuit training with Charlene daily if possible. I realised that if I have to tighten the bungees to such an extent that I can leave Charlene to sit by herself, the problem I have is that her head will be protruded outwards like a duck (just imagine yourself in front of the computer screen). After checking with the school physiotherapist, it is indeed not wise to leave Charlene in that position as her chin should be tucked in. However, the neurosuit targets more on the big muscles which explain why her trunk is so stabilized. So, Teacher Melody taped some kineseo tape on Charlene's neck to see if that will help.

We will persist in the neurosuit training and we pray that God will use that to train Charlene's neck muscles that Charlene may control her head and sit on her own!