12-18 Dec 2011

Charlene is sick the whole week after catching the virus from me.

She was coughing and sneezing and had a lot of phlegm. The worst is she coughed so violently that she vomited milk. We were busy clearing up and doing lotsa intensive chest physiotherapy for her. It was a bad week. Blended food has to be put on hold and many exercises could not be done, not just because Charlene is sick but also because of her biological clock shifting again. A few days, I was rolling her in the middle of the night at 3am, which is really crazy.

On Wed (14/12), I brought her to KKH for an appointment with the sleep clinic. I was told to do a 3-day sleep oximeter at home as a preliminary trial and some data for the doctor to work on. A more detailed overnight sleep study has been scheduled for April 2012 in KKH.

During the visit, the doctor put an ice-cream stick in Charlene's mouth to check her tongue and the sleeping Charlene complained loudly and waved her hands frantically at the doctor. The doctor and nurse were pleasantly surprised by Charlene's reaction. They both known Charlene as one that is always sleeping and non responsive. I thanked God for Charlene's responses.

17 Dec 2011

Our friends came to visit us today. Thank you for making time for us and for the christmas presents for Charlene. We are thankful to God for providing us a place of our own. We realised that we have visitors almost every month which is really good for us since it's quite difficult for us to go out without a car. Also, Charlene love visitors (if she is awake). 

PS: Thank you to all others (church friends, colleagues) for your xmas gifts to Charlene! 

7 Dec 2011

I brought Charlene to KKH for her 8am neurosuit training. Thank God for good weather for we took the train and walked there. Charlene was awake but grouchy probably because she didn't sleep enough. She did some work and had her slides. Again, she will only vocalise during slide times...

After a whole morning spent at KKH, Charlene was visibly tired. Yet, she remained awake and dozed off for 20 mins only. My guess is that she wants to be awake to see her favourite doctor Natalie. So Charlene remained awake to see Dr Natalie at 4+pm. She is so tired that she is not smiling but we can tell that she is trying her upmost best to stay awake. While I was making tea, Dr Natalie said that throughout her conversation with Charlene, Charlene only responded (by raising her hand) when she told Charlene "Jesus love you!"

While I carried Charlene, she was apparently dozing off but once Dr Natalie carried her, her eyes opened bigger. We left her in her cot to sleep while we had tea and muffins.

After some time, we heard Charlene calling for us. After Dr Natalie said her goodbye and left the house, Charlene fell asleep almost immediately.

6 Dec 2011

Charlene's first appointment with Sarah Wong, physiotherapist, Kids Focus

I had a challenging start to the journey. I carried Charlene in the harness and boarded bus 806. Charlene started coughing along the journey and when the bus stopped at the interchange, Charlene puked a lot so much so that it spilled over from the towel I was holding to the floor.

After cleaning her up, I waited 15 mins for bus 852. When it finally came, I didn't board as I figured I will be late for the appointment.

I thank God that Charlene is awake for the session. Sarah tried her on another compression suit and left Charlene to sit on her own. Charlene's could sit (as in her trunk is relatively better) BUT her head was totally flopped downwards. Upon seeing that, Sarah said that the next appointment she will try the same thing but use electrical stimulation on Charlene's neck to activate her neck muscles. Sarah is quite impressed that Charlene's trunk muscles is quite good. She was also quite positive that Charlene should be able to achieve independent sitting.

Charlene was whining at times during her intensive training. But it was overall at least a good session cos she is awake.

1 Dec 2011

Charlene was awake for neurosuit training today. She did extremely well. Without Siti supporting her head, she held her head up for 2 mins by herself. She was also doing some of the work (stretching her muscles etc) herself according to Siti. 

But it must be extremely tiring as she slept very early that night and woke up very late after that. 

27 Nov 2011

Our friends; Mao, Audrey n Milie came to visit us and Charlene.

They celebrated my birthday with delicious cupcakes (as birthday cake) and pizzas. Charlene also received her belated birthday presents; a talking soft toy doggy and a light n music projector (which she likes!)

Afterwhich Mao gave us a ride to Seletar Air Base to eat jalapeno wings. But we were too late and they have already closed (and the venue will be closed for good). So sad cos the place is so rustic and scenic. We proceeded to Jalan Kayu for the famous Selegie soy beancurd. Dez and I haven't smell the night air and soaked in the night atmosphere since Charlene was born. We are really happy for this time.

We thank God for friends who care for us.

25 Nov 2011

When Daddy came back, I told Charlene to say 'Hi' to Daddy. After waiting for 2 mins, Charlene raised her hand (as her way of saying Hi) and Daddy was very pleased. :) You can see that it took her a lot of effort to raise her hands, bec her face showed some straining and her fingers twitched one before she raised her hands.

I thank God for His grace through another busy week. Though I was tired and my backside was aching till yesterday, I thank God that He taught me how to use different pockets of time to complete my chores without compromising on time with Charlene.

I also thank God for His Healing. I woke up this morning and found my backside no longer stiff and aching.

I also thank God for my newfound friends. They gave me advice on physiotherapy and what not. It was good support and a good channel to let out steam, share joy and sorrows.

I also thank God for showing me His grace and healing through others. Do watch "I See You - A CareGiver's Story" on Channel 5, Thur 730pm. The first episode touched me. The couple knew that the unborn baby will have defect but still kept him. The boy Emmanuel was born with organs outside his body and he also has heart problem. God sustained him and blessed him as he went through various operations and arduous physiotherapy. He is now 6 years old and can talk, can walk, can eat through mouth. I also read 2 other blogs on 2 other special children. It is amazing to see how these little children are so strong and overcome their obstacles and surpass doctors' 'death sentence'. I am also encouraged by the love and perserverance of their parents!

22 Nov 2011

Today, Charlene continues to be a good girl and makes her mummy happy.

Charlene sat in the pram with the balloon tied to her wrist. She seems like she is tracking a little as the fan blew the balloon away. She still can't turn her head but her eyes were tracking...

Thanks to Sally. I started using the sesame street website. Found songs that goes "Raise your hand", "Clap your hand". So I did them with Charlene and she was smiling happily.

I also played Elmo song and C for Cookie song. While I was taking my lunch, I played Elmo song. When the song ended (only 3 mins+), Charlene went 'eh'. So I played the second time. When it ended, she went 'eh' again. Only after the 3rd time, she did not say anything. I think she likes the Elmo song more than the husky voice of Cookie Monster. Anyway, I am really glad to have the website.

Cos Rose told me to try picture cards, I showed Charlene 2 cards; one cat and the other dog. I showed her the picture with dog and made barking sounds plus a song. Same with the cat. Then I left the dog card below her right hand and the cat card below her left hand. I told her to choose one and that I will wait no matter how long she takes. After a minute, Charlene let out a 'sigh' and lifted her left hand abruptly. Almost immediately, she then started throwing tantrums by kicking her legs wildly. I picked her up from her pram immediately and rocked her in the air, praising her and she stopped. So clever.

21 Nov 2011

I am very happy today. Charlene is such a good girl today.

I told Charlene it is Auntie Milie's birthday today and I need her to smile so that I can take a nice picture and wat app to Auntie Milie. She smiled immediately. But cos later I decided to tie her Happy Birthday balloon to her wrist for the picture, she didnt really smile.

In the morning, I rolled a spiky ball across her arm and palm and she got irritated. So I asked her to hit the ball away (stretched arm forward). I took her hand and demonstrated once. The second time I irritate her again, she stretched her arm and hit the ball away. So clever.

Cos my backside pain (due to prolonged sitting and probably Charlene's heavy weight on me), I decided to make Charlene sit on the taxi seat leaning on me and my hands supporting her head. She gave me the 'what's happening to me' look. Think she quite like the bumpy ride. But a bit dangerous - the reckless driver jammed the brake and she almost flew out.

She was still quiet and good. But shortly after we entered the neurologist room, she started whining. Maybe she realised where she was. Anyway, when we were about to leave, I told her to say bye and before I could hold her hand up to do a flying kiss (which is a routine), she raised her right hand herself. I think the doctor was a bit taken aback and praised Charlene for being a good girl.

I also met up with my newfound friends. And when I asked Charlene to say Hi to Auntie Rose, she raised her right hand. Charlene was smiling happily as she met Mummy's new friends and Issac didi.

One of my newfound friends Sally wrote a song to encourage Charlene. Tune of the song 'Sixteen' from the Sound of Music.

"U are two now, going on three
Baby, u're such a plum
Growing stronger, smiling with glee
Charlene, u're such a charm

Raising your hand to say hello
All by yourself
Surprising everyone you know
But not your dear old self

You can do it
Little by little
All u need is time
Slow and steady
Wins the race

Your mummy is very proud"

20 Nov 2011

Charlene was awake at 3am. So the both of us also woke up to play with her.

When we reached church, fellow brothers and sisters came to greet us, Charlene smiled happily at them all and everyone was delighted to see how happy she is.

She continued to smile happily throughout worship and didn't fuss during sermon.

At the end of service, after I cam out of the toilet, I found Charlene surrounded by many uncles and aunties. So popular, like pop-star. Anyway, Daddy went to talk to Reverend Erick and Charlene started to be upset (maybe hungry). Amazingly, after she heard Auntie Shanti (Charlene absolutely loved Auntie Shanti cos she held her hand throughout cell and carried her) talking to Reverend Niam, she stopped fussing. Auntie Wendy is amused with what she saw too. When Auntie Shanti spoke to Charlene, she was obviously responding to her by flaying her arms. Charlene really like Auntie Shanti. Perhaps, Charlene can sense the sincerity of the person and who truly cares for her....

Charlene's first overseas trip

29 Oct 2011 - 4 Nov 2011

We thank God for providing the opportunity for our family to go on a holiday together! As Dez is there for work, the allowance helps us to cover part of our hotel's expenses. Charlene's and my air ticket cost around $600 and we put aside $500 to spend.

Charlene is probably too excited the night before we set off and she couldn't get to sleep. That resulted in her biological clock being inverted again. She slept through the flight to Bali and only woke up at the night during our stay in Bali. Or perhaps, she wanted to let us enjoy ourselves...

The hotel we stayed in (Santika Premiere Beach Resort, Bali) was fantastic! The entire hotel atmosphere is rustic and peaceful. The staff is friendly and greet us at all times of the day. Outside our room is the swimming pool. When Dez was away working and Charlene was sleeping, I went swimming in the afternoons and would just lie on the chair, looked at the clouds in the sky, read my Daily Bread and appreciate God's creation. Dez and I also had an opportunity to drink cocktails (50% off during happy hours) while swimming in the pool. A pool-side bar experience is something that we probably will never do again...

The buffet breakfast in the hotel was good! There was different food (indonesian food, pastries, fruits)  each day and the quality of the food was good. I ate so much that I can skip lunch and just have dinner. Kunyit restaurant in our hotel serves authentic Balinese food. We are glad we tried their signature dish fried duck on the last day - crispy on the outside and succulent on the inside.

Besides Kunyit, we had dinners at some other places. Febri restaurant just opposite our hotel is value for money. The food is good too. We had nasi goreng and gado gado. We also had Greek and Mediterrean food at quite reasonable prices. The pita dip and kerbab were savoury too. Dez liked the waygu beef burger he had in a Japanese restaurant.

We are not really people who shop. There are many street shops in Bali selling singlets, T-shirts, bags and souvenirs  We are lousy in haggling and very often kena cheated big time. Beware of these street stall owners, they will raise their prices by at least 4 times! So even after they give you a 50% discount, the prices were still much more expensive than the shopping malls. There are 2 shopping malls - Discovery Shopping Mall and Kuta Square. If u are not good in haggling, Bamboo souvenir bazaar in Discovery Shopping Mall and Matahari in Kuta Square may be a better idea. The water in Bali is not drinkable and we had to buy plenty. One mini mart (Dewatra) near our hotel sells water the cheapest.

We didn't go to the beach much as we didn't want Charlene to be sun-burn or catch a cold as the sea breeze can be quite cold. I thank God that on the evening I pushed her there in her pram, not only did I manage to catch the beautiful sunset, I was also able to witness a wedding on the beach!

Overall, we are really happy to be able to create new memories with Charlene. Never would we imagine that we can travel overseas with Charlene. Indeed, as written in Mark 10:27, “With man this is impossible, but not with God; all things are possible with God.” 

26 Oct 2011

Our cell group organized Charlene's birthday party. Thank you to each and everyone present who came to celebrate Charlene's birthday! We are so blessed to have found a caring church, caring cell members who went the extra mile for us and supported us in whatever ways they could.

It was easy for us as we just needed to be present. We enjoyed the fellowship tremendously and felt really loved. I am sure Charlene can feel the love too as she love going to cell group and to church every week.

These 2 years have been the most difficult in my 30 years of life. But I am grateful to God that Charlene has progressed so much and done so well! I am thankful to God that I am able to see Charlene smile and whine and responding to me each and everyday. She is really super cute...

Potluck

Deco

Thank you Auntie Lee Lee for the pretty ralph polo dress

Pretty cake

Charlene looking at her birthday balloon

24 Oct 2011

Charlene was awake and did well for her neurosuit training in KKH though she complained quite a bit. We are glad to hear from Siti that Charlene will probably be one of the rare children who has no head control to benefit from neurosuit training. We pray that the neurosuit will help Charlene greatly in her muscle control that she will be able to sit by herself!

Charlene also celebrated her birthday in school today! We thank Uncle William for baking the pretty and delicious cake for Charlene. (www.havenbakery.blogspot.com) Charlene was very happy and kept smiling. During song time, Charlene was able to raise her hand when told to do so and even managed to make a noise once when Teacher Adeline asked her to do so.

Pretty cake

Charlene smiling happily 

Charlene posing

21 Oct 2011

Charlene lifted her left hand on both occasions when I told her I want to 'hi-five' and shake her hand. She did the same in school when Teacher Dhilah wanted to shake her hand. Though she still can't verbalize and say '3', she knows now that by raising her hand, it is a response that the teachers will accept as an indication that she understood.

19 Oct 2011

Charlene was smiling happily in the school bus. But the moment she was put on her 'Mecedes-Benz stroller', her face turned black. She started to whine once she was in the physiotherapy room. Teacher Melody did the gym ball with Charlene and perhaps sensing what was to come next, Charlene started throwing tantrums and was very upset when AFOs were put on her ankles and she was put on the standing frame for only the 2nd time.

She was so upset that she had a fit and fell asleep. So she totally missed song time and woke up when it was time to go to the soft play room. She made a lot of noise indicating she wanted more slides. And perhaps she was cold. I resorted to putting her "under a tunnel" (The teachers were joking and saying oven) where she finally calmed down and slept. She awoke and painted a piece of abstract art for a while before drifting back to sleep. Exhausted, she slept soundly and did not get to see Auntie Lena...

A poigant article from a parent who has special need kid

Must read! I was crying as I read this article....

Notes from a Dragon Mum
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html

18 Oct 2011

I was reminded that Charlene doesn't like me to talk on the phone. A couple of times, when she is lying on her bed after milk, as soon as I talked on the phone, she will start 'protesting'. 

The same happened today. I called my mum and Charlene started whining almost immediately at the start of our phone conversation. 

My mum heard her and told me to let Charlene listen to the phone. She said some good things to Charlene - I heard her tell Charlene in mandarin "mei3 mei3", meaning pretty. After that, Charlene kept quiet throughout the remaining of our phone conversation. Will try this out again the next time... :) 

17 Oct 2011

Charlene shut her eyes in the swimming pool when I was making her sit and stand in water. The moment I passed her over to Teacher Dhilah, she opened her eyes. And smiled happily as she laid relaxingly in the water! So clever. I don't know to be happy or angry, hahaha.

Charlene threw tantrums on her bed. Daddy carried her, she continued to whine. Daddy made her sit, she is still furious. Mummy carried her, she tried to kick herself out. Daddy suddenly exclamied "She wants music". The moment the "sleeping music" (hymns) starts playing, she fell asleep immediately in Mummy's arms. We are so glad that Charlene knows what to do to get what she wants and will immediately be appeased and satisfied once she gets her way. :)

14 Oct 2011

The school bus tv was showing Eason's concert and cantonese songs were being played. Charlene was listening attentively and was obviously 'looking for them' after it was switched off.

We went for physiotherapy night clinic at KKH. It was more to cater to Teacher Melody who wanted to be at the neurosuit training. Dear Charlene is awake but refusing to cooperate and refuse to do much work especially in lifting her head. Nevertheless, the neurosuit will enable her to balance herself such that her lower body is stable and able to sit without support. That means only need to support/stimulate her shoulder/neck to train head control. After an hour of being in the neurosuit (the longest ever), Charlene had a fit and slept. So the training ended early (it was supposed to be a 2hr session). Since we had time, we decided to go to cell-group.

When we boarded the taxi, Charlene woke up (she obviously was avoiding the neurosuit training). Rev Erick and his wife, Shanti visited our cell. Auntie Shanti held Charlene's little hand throughout worship and throughout cell. Auntie Shanti carried Charlene at the end of cell. Charlene was visibly happy with Auntie Shanti. When we had to leave, and Charlene was transferred to her mummy, she was upset and kept complaining!

8-12 Oct 2011

I was away for a few days as my grandma passed away. 

Charlene was looking for me on Sun and whined through the day. When I came back late at night, Charlene woke up, saw me and complained. 

On Tue evening, Charlene could not get to sleep as she couldn't find her Daddy and Mummy and eventually only slept at 2am. 

Thank God for my mil, lincoln and wei chin who covered my duties in my absence. 

5th Oct 2011

I managed to train Charlene this morning to raise her hand voluntarily to 'high-five' and to shake hand with me. (she needs a super long time like a minute before she can respond).I also put her on the gym ball below the mobile. She lifted herself very high up for a few times.

In school, Charlene was smiling happily throughout. Perhaps, it's because there is no physiotherapy session and it's her classmate birthday.

2nd - 3rd Oct 2011

Charlene is sick. She kept coughing and sneezing.
She slept at 130pm on Sun afternoon.
I was expecting her to wake up at 130am on Mon but she did not.
She slept through and by 130pm on Mon, she had slept for 2 hours and was still not awake.
I began to worry and sms Dr Nat who kindly responded to all my sms and told me to bring Charlene to A&E for a check.
But I am very reluctant. On Sun night, we brought Charlene to the doc who confirmed that her lungs are fine. So I don't see what the hospital could do to help.
So, I was very stressed with Charlene (sick and not waking up) and my grandma (who is in critical condition).
Thank God that after our cell group prayed for Charlene, she finally woke up from her slumber on Mon night 1030pm (she had been asleep for 34 hours).

30 Sept 2011

We had a physiotherapy class at Margaret Drive Rainbow School. Charlene was sleeping for the first half of the lesson and woke up in time to be Teacher May's dummy for the hands-on demonstration. She was whining and babbling non-stop and the other mummies there were so amused with her.

We met other mummies who had special needs children and they also voiced their disgust with neurologists. One mummy encouraged me to use the gym ball more to improve Charlene's head control and said that her son's head control was initially very poor but he can hold his head after a long time.

26 Sept 2011

Charlene was asleep when she started her physiotherapy. She was angry at being awakened - she whined and showed black face. Afterwhich she had occupation therapy. As she was very cold, the therapist covered her up and played slide and swing with her. But she continued to remain cold. So we wrapped her up and put her on a wedge. The therapist trained her head control by getting her to turn to the side where the toy (it was a singing school bus) was. Charlene smiled happily and when I told her "no more", she protested ("eh") and didn't want to leave. Her occupation therapist was very pleased and surprised by Charlene's responsiveness.

The wait at the neurologist is freaking long and not much of use. Status quo. Continue to wean off topomax...

Pictures... (long over due!)

This is called AFO. It costs $200+ per side.

Nice pic. Handsome looking, isn't she?

Charlene's first attempt on the standing frame
Look at how TALL she is!

Charlene sitting on the spiky gym ball

Charlene rolling on the spiky gym ball

Charlene drew a card for her 1st ever teacher!

Charlene drew another card for her physiotherapist in sch

Big O

Thanks to Uncle Lincoln, Charlene can look at herself in the mirror!

22 Sept 2011

My mum was carrying Charlene and rocking her (cos Charlene was upset after a seizure). I said that I promised Charlene if she could hold her head up by herself, I will bring her to sit the 20 cent coin machine that will move and sing song. My mum said cannot spoil her, don't let her sit. Upon hearing that, almost immediately, Charlene protested with a loud "Eh". My mum was rather 'impressed'.

Then when my mum told Charlene that she is going home and nobody will play with Charlene anymore, Charlene "Eh" loudly again. Hahaha. Good job, Charlene. :)

21 Sept 2011

Charlene is a happy girl in school today. Teacher Melody did a bit of rolling n checked her breathing. Charlene's abdomen muscles are developing and have strengthened. This has pushed down her ribcage and helped her to breathe better. Thank God!

Teacher Melody then put AFO on Charlene's feet and told me to get a pair. One side costs $200+. A pair would cost $500? Sigh, it's demand and supply at work. Demand is rather price inelastic, explaining for the high price. But, people who required these stuff would already be incurring high medical expenses. Sigh...

Anyway, Teacher Melody then proceeded to put Charlene on the standing frame. It is the FIRST TIME EVER that Charlene is standing! She looks so TALL and so handsome. Hahaha. She is quite a cooperative and good girl. She did not whine at all. I think she is quite awed by her new view. Her right foot required more stretching and more weight bearing as the back of the foot is hardly touching the ground even with the AFO.

Teacher Theresa (she is super good!) then took the initiative and tried to put Charlene on a buggy that she think will work. It is a wooden frame with wheels and a 'table' in front. Charlene obviously cannot sit in that as her head keep tilting upwards. Teacher Theresa is not trained in physiotherapy but she pushed Charlene all the way to the second floor to ask the occupation therapist (full marks for initiative and effort!) Dear Charlene was probably quite amused with her new 'chair' and was smiling happily with her head tilted upwards throughout the short 'journey'. Onlookers were all amused with her. After much consultation with the OT, Teacher Theresa found a great buggy (she named it Mercedes Benz, as it is big with big wheels and super comfortable with padding) and most importantly, Charlene's head would not tilt upwards causing her to choke. However, Charlene stopped smiling. Strange girl. Anyway, thanks to Teacher Theresa, I can push Charlene around in school and no need to carry her around (literally heavy load off my shoulders)

19 Sept 2011

Charlene gave all she could and responded to her teachers in class today. Not once but twice. She was asked to count 3 and she "Eh". And when she was asked to raise her hand to indicate that she wanted a song, she managed to raise her hand by half. Thank God for Charlene's ability to learn!

12 Sept 2011 Term 3 starts

Charlene only slept at 4am and was soundly asleep the whole morning. I prayed to God that He will bless Charlene with a fruitful day in school. Amazingly, the moment we reached class,Charlene woke up. She smiled happily through song time. Charlene was able to raise her hand up to shake hand with Teacher Adeline after much scaffolding. Teacher Adeline was impressed and praised Charlene. I was so touched I almost wanted to cry.

Then, Teacher Dilah got Charlene to raise her left hand again. Though it takes some time, but it shows that Charlene can do it. Also, after Teacher Dilah taught Charlene how to slap her right hand in the water, Charlene did that consecutively for 3 times!

Charlene fell asleep immediately after bathing. I thank God that He kept Charlene awake for 2 hrs of fruitful school time in which Charlene learnt many things!

2 Sept - 11 Sept 2011 Sch holidays

6 Sept 2011
I brought Charlene to the hospital for her gastro appointment. Charlene weighs 11.8kg and is 83cm tall. I told the Dr to check Charlene's tongue to determine if the whitish thing at the back of her tongue is oral thrush or refluxed milk. Dear Charlene refused to open her mouth and bite the ' ice cream' stick tightly. So the nurse resorted to pressing Charlene's nose to force her to open her mouth (I was watching and thinking to myself how clever and unorthodox these people are). Anyway, Charlene was totally furious at what was being done to her and started waving both her hands in the air furiously. The Dr screamed at the nurse to hold her hands and the nurse with one hand on Charlene's nose, meekly asked me to hold Charlene's hands. Haha, I actually find it quite comical. As compared to the quiet meek Charlene in her 1st few months of life, Dez and I prefer the complaining, whining, energetic Charlene. Praise God!

Anyway, the result of the check on the tongue is that it is neither oral thrush nor refluxed milk. It's phlegm....


9 Sept 2011
We have 2 appointments today, one at 1030am, the other at 3pm. Charlene used to smile happily at Dr Natalie whenever we have paediatric appointment. However, cos Dr Natalie has left, Charlene slept through the whole appointment with the new Dr. She didn't even see how he looks like.

The appointment went unexpectedly fast. Cos I reached early and the fellow before us was late. By 1130, we were done. After feeding Charlene milk, it was only 12. 3 more hours to go. I bought MacDonalds lunch and was thinking to myself how to pass that 3 hrs when I bumped into Jo (the occupation therapist we are supposed to see at 3pm). She asked why I am so early and when she heard that we are done for the day, she said she could see Charlene at 1pm. I was super happy and thanked God for His goodness!

Charlene was awakened by Jo who 'took her on a bumpy ride'. She showed interest in a toy drum as well as 2 noisy boys running around the gym. Cos she was quite cooperative, I told Jo to reward her - let her slide down the slide. I counted one, two and Charlene said "ehh...!". And when she reached the bottom of the slide, she whined and made a lot of noise. Jo was pleased to see her 'talk'. She also said that Charlene's neck control has improved a bit. Thank God!

Thomas and Rusyinni gave us a ride to cell. When Thomas said Charlene 'heng2 mei3', she smiled at him happily. After cell ended, I took the waffle with ice-cream and showed it to Charlene. Then I went to eat and ignored her completely, leaving her to her Daddy. When we changed hands, Charlene threw tantrums at me, obviously upset that I dumped her aside just now. She whined and 'thrashed around' so much that our cell group people were wondering if she is ok. We are grateful to God that Charlene is making progress!

29 Aug 11

29 Aug was a day off for Dez bec of the Presidential Election.  Teacher's Day was coming and we decided to get Charlene made some cards for her YPS teachers.

I bought some colour paint, and a small drawing board. Dipping Charlene's thumb in the paint, we will then guide her thumb to complete some drawings. Charlene was looking amused throughout the painting process. By the third painting, she was tired and we had to stop the painting.

Will post the pictures after we managed to upload the photos on to our desk top.

26 Aug 11

It was the Presidential Election. We originally wanted to bring Charlene to the polling station, which is a nearby school. Thought it would be quite cool to let Charlene be involved in the historic PE. But it was raining heavily, so we have to abandoned our plan.

Our dear Charlene is once again awake throughout the PE results. Dez was carrying her while we were waiting for the results. Suddenly, Charlene  started "uhmmm...uhmmmm...." continuously. We were puzzled cos we haven't never seen Charlene making this kind of sound.

"Huh? Charlene, what are you doing...?"

"Oh, you are s***ing!"

Charlene was like a normal child, straining to get "it" out, and hence the sound! In the end, we have to change her diaper at the sofa....smelly smelly.

She was awake till 12mn... But Daddy and Mummy was too tired to wait till Yam Ah Mee appears, so we slept before the recounting was completed.

21 Aug 11

Charlene trunk muscles seems to have improved quite well. She's much more at ease sitting up now. In fact, after lying in the cot for too long,she will whine and wants to sit up straight! I was able to put Charlene in the baby chair for more than 45mins, with Charlene happily listening to the music. Praise the Lord for Charlene's progress!

Also, Uncle Lincoln came to fix the 2 mirror panes in Charlene's play-room. It was hard work for Lincoln, with the drilling and what not, but we didn't think it was worth it to spend 70 dollars on mirror installation. The 2 mirror panes really help us in the exercises;  we can now see Charlene's head position and posture, which we might normally not be able to see.

Charlene also can see herself in the mirror! Hooray! So I will sing "Mirror mirror on the wall, who's the prettiest/cuttest of them all!" And train Charlene to raise her arms and say "me me me" excitedly. She is always amused with her noisy mummy.

17 Aug 2011

Charlene was whining non-stop in the morning. She will stop immediately when I picked her up. When the schoolbus driver say Hi to her and touch her left palm, she withdrew her hand immediately. This caused Uncle to be amused and he ask Charlene "Why, cannot let Uncle touch ah?"

While waiting for the classroom to be ready, Charlene and I sat quietly outside. The moment we went in to class, Charlene started whining. All the way to physiotherapy. She whined when teacher melody touched her chest to assess her breathing. She is damn cute lar. She will stop whining, with expectant look from her eyes and start whining the moment teacher melody touched her. Once, that was done, she became quiet. And strangely, obediently did all the rest of her physio exercises. She sat so well that teacher melody was reluctant to let her go.

We played with ice-cream today. It was a super mess. Ice-cream all over the shirt and face. Charlene looks like she like ice-cream when i put her finger into her mouth. Hahaha.

16 Aug 2011

I brought Charlene to the feeding clinic today. She is very awake. (She normally sleeps when she sees PT and OT). The dietician was recommending that we switched Charlene to Pediasure (a full nutrition milk). As soon as we are done with Enfagrow, we will do that.

Charlene weighs 11.7kg and is 84cm tall. She is developing well physically. The speech therapist was saying that must find a suitable chair for Charlene. But her head control remains a problem. She can sit in the chair that Uncle Vincent and Auntie Audrey bought for her but her head will either be in recline position or dropped down, How to feed like that....

The speech therapist was saying try the feeding spoon exercises twice a day instead of one. I was explaining to her time is limited, minus away sleeping time and feeding time, still have to allocate time for other developmental exercises. She immediately reassured me that I am doing a good job and I know what is best for Charlene and when to do what. It's the first time I have heard this response from a professional (besides Dr Natalie). Most of the time, I get the feeling that I am not trying hard enough.

15 Aug 2011

Charlene suddenly had fever on Sun night. It was hovering around 38deg. I was pretty upset about not being able to bring her to school cos we will miss hydrotherapy as well as OT. Charlene looks perfectly normal, awake, alert and making noise though her temperature remains at 38deg. I was kept busy the whole day, sponging her.

Thank God that by night time, her fever has gone.

We are suspecting that she might have heat circulation problem. Or it's just her super thick hair causing her head to be hot... LOL

9-14 Aug 2011

Charlene's biological clock inverted for no reason again. I am beginning to suspect that it might be because we brought her out and the information overload and processing trigger her fits and caused her to sleep in the day hence changing her biological clock.
Anyway, so she slept through National Day. We had no chance of taking a picture of her in national colors holding the national flag... Oh well.

On Friday in school, we play with agar agar strips. Charlene has the "what's this?" look on her face. That was the only thing we did before Charlene fell asleep again, successfully evading feeding exercises.

8 Aug 2011

Charlene slept through her physiotherapy yet again in KKH. Since there is time I decided to take bus home. 851 all the way fr KKH to Yishun interchange and then feder bus 806. It is Charlene's longest bus ride ever but she slept through it.

3 Aug 2011

Today I got a little break in school. Teacher Theresa took care of Charlene for me. Charlene kept being put in different sitting positions and she whined and whined. The class played with bubbles and a big colorful cloth. Charlene looked confused as to what is happening to her.
Teachers let Charlene play with tomato slices. She liked it when her finger was put into her mouth for tasting. :)

2 Aug 2011

Charlene took the MRT with Daddy and Mummy all the way from Lavender to Yishun! The furthest MRT ride for Charlene ever! :)

1 Aug 2011

Charlene was smiling during song time in school and when Teacher asked her to say 3, she smiled. During OT, the therapist put some tape on Charlene's neck and shoulder to tighten the joints and hopefully to improve muscle control. The moment Charlene's blouse was taken off, she started whining till her blouse was put back. When the therapist carried her, she gave a wide smile.
In hydrotherapy, Charlene was able to hold her head for a minute without my help. It could be the neck float or perhaps the tape is really working?
I decided to hold Charlene by her armpits. So she was upright in the water. Then out of fun, I decided to do 'bounce' her up and down in te water. She absolutely love it! Teacher Adeline told me to stop the action and to ask Charlene if she wants more. The moment I stopped, Charlene became upset and started to whine. When i resumed the action,she stopped. So amusing...

31st July 2011

During worship this morning, the moment the song 'Amazing Grace' was played, Charlene's face brightened up and she even raised her left arm 3 times!

29-30 July 2011

The speech therapist in school saw Charlene today and taught me to do oral stimulation exercises for Charlene. I am always worried that Charlene will choke. But the less practice Charlene has, the worse her swallowing will be.

I passed Charlene to teacher Dilah and went to the toilet. When I went to Charlene again in the multiple-sensory room, she was upset and throwing tantrum. Both teachers confirmed that she was not like that in my absence and only started when I came into the room. She must have been upset at me for 'dumping' her...

On sat morning, I told Charlene that it's Sat and Mummy needs to go teach tuition. She immediately whine. And when I left her alone in the room, she threw tantrums the moment I walked in. We are really glad that Charlene knows what's going on!

27 July 2011

Charlene is still coughing quite badly. On our way to the school bus, Charlene coughed and puked. I was carrying her in the sarong. With a backpack and a hand fan, I simply needed extra hands. I shouted at the bus uncle that my child is vomiting and he came down to help me take the stuff.
Throughout the whole journey, Charlene kept coughing non stop. The bus uncle and auntie were worried she would puke again (this time in the bus). She didn't, Thank God.
Charlene made many responses while playing the slide in school today.
Somehow I felt that after this stay in the hospital, her responses have heightened. :)

22 July 2011

Thank God!
Charlene is recovering well. She is still coughing at times. Last night, she was awake and smiling!

Charlene is waiting to be discharged.

20 July 2011

Charlene started having high fever yesterday. But it was below 39deg so we didn't send her to hospital immediately. After sponging her and with the cooling pillow, her fever will come down. But if we didn't do any of that, her fever will come back up.

At 2am, her fever went up to 39.1 deg. Despite been given panadol and sponging, the fever did not go away. 1.5hrs later, we decided that we have to send her in for her sake. She also coughed and vomited everything that was fed to her.

After she was warded, the fever came down. But the coughing was terrible. She will cough and cry at night and sleep through the day despite all the disturbances.

13 July 2011

Charlene is wide awake for school. But the moment I laid her on the gym mat in front of the mirror, she starts to whine. Only after I took a Winnie-the-Pooh toy, did I get her attention. She continued to whine throughout physio.

When we reached class, she sat and after hearing songs, began to smile. :)

Today, I saw Charlene move her right palm away from an orange Teddy bear and picked the crocodile. She took a few minutes but it was really heartening to see her being able to respond in this way. We went to soft playroom and Charlene enjoyed her slides. Initially she didn't want to count till ahe heard Teacher Adeline's commanding voice. She even slide down by herself. Charlene also got used to the ball pool. She whine but at least not throwing tantrums.

11 July 2011

Charlene was given 2 toys to choose; yellow Teddy bear and spider. To my surprise, she chose the Teddy bear by dropping her palm from the spider.

Charlene is awake for hydrotherapy and was whining as the water is a little cold. But she sat very well and also did some hip exercises.

8th July 2011

I needed to cook lunch so I left Charlene in her playroom with air con and the music 'Incy wincy spider' playing on my iTouch. When I switched to another music, she got upset and started whining. I played back the spider song and she kept quiet till it's time to go to school.

6 July 2011

Charlene has 3 appointments in KKH today. I was mentally geared to handle her alone. Dez bought me a heavy breakfast and I spent the time preparing the bag and things to bring. Both times I fed Charlene, she coughed. I thought carrying her upright might help. But both times she puke saliva out.
I remembered wondering "Like that how"? Immediately, I prayed to God that He will bless me on our journey to KKH that Charlene will not puke, poo, leak etc. I prayed that I would be able to manage and handle her in whatever situation. I also pray that I will be blessed with taxi uncles who will be gentlemen and will help me with the pram.

I feel confident and at peace. Charlene slept the moment we set off at 11am. The taxi uncle helped me load and unload the pram. When we reached KKH, the patient service assistant who took Charlene's weight was a familiar face; one of the blessing that God has blessed us with in our early days of taking care of Charlene. This lady will give us encouragement and show us concern. It was the same each time I bumped into her. She will ask about Charlene and encouraged me that Charlene's growth is cos I took good care of her. This time, she said that she felt the confidence in me in taking care of Charlene.

Charlene slept through physiotherapy even in the neurosuit.
The cardiologist appointment dragged as the consultant wanted an ultrasound. Charlene's main heart muscle remained mildly thick. The cardiologist who did the scan was quite determine to find a diagnosis for Charlene's condition. When they told me that they suspect Charlene has sleeping disorder and that may cause her heart problem.
So they gave us a referral to the sleeping clinic. I was quite amused as a year ago I have been telling the neurologist to send Charlene to the sleeping clinic. Anyway, I thank God that finally Charlene is going for the sleep clinic (though they are fully booked till Dec).

I also managed to feed Charlene 150ml of water on 3 different occasions n 50ml of milk. I also collected her med at the pharmacy before heading home.

When I reached the house lift lobby, the lift door opened right in front of me without me pressing it. I am v grateful for a blessed day and felt that God is by my side watching me and giving me strength and help.

Photos of our new place

TV console and our white TV

Living room

Master Bedroom - Built-in wardrobe

Kitchen

Charlene's playroom - lime green wall

Our mini extendable dining table- tempered glass top with wooden legs

30 June 2011

Neurosuit 

Charlene was awake for her physiotherapy in KKH today. As Dez is around, I told the physiotherapist to try the neurosuit (http://www.neurosuitasia.com/) for Charlene again. The first time we tried on a sleeping Charlene, she was extremely upset and cried loudly...

But today, the wide awake Charlene was receptive to the neurosuit and was willing to try to lift her head and did quite a bit of head and neck control exercises. Will try to upload video...   

27 June 2011

School reopens!
Thank God for answering all my prayers!
We took the school bus that went round the whole of Yishun and Charlene was smiling non-stop throughout the 30min bumpy ride... Nothing eventful (such as vomitting) happened, cos Charlene has motion sickness.
Charlene joined a new class with 5 other classmates. Previously, she was alone in the class. She is obviously happy to have new friends with her as she smiled happily for the first 25 mins. She also chose the spider over the flurry star once again.
But, perhaps due to 25 mins of sitting on the chair (with me supporting her neck and back), she was tired out and had fits. After that she was tired out and slept. She slept through the whole of hydrotherapy again and only woke up during bathing. Though there are difficulties, I am still thankful that I was able to manage Charlene by myself. Will pray and look forward to the day that Charlene is able to sit up by herself and hold her head up so that I can give her a ride on the bicycle to school....

21st June 2011

I never thought that we would be able to meet anyone in the online MPEI support group in real life and in Singapore! 

It is really great to meet up with Andrew Mhyre - father of Katelyn and to update each other of our daughters' progress. It is just so good to be able to connect with each other, to understand and know what we as well as our daughters are going through! 

Thank you to everyone on the MPEI support group. Your support, comments and advice are greatly appreciated. :)

19 June 2011

19 June was a special day for us.

It's Dez's birthday and his first father day.

It's also our YMM membership reception day, declaring that we will grow strong in faith in YMM.

This is also our first time attending YMM's family day... an outdoor event!

It was a hectic day, bec we weren't sure how long it would take to go to YMM from our house... so we reached  earlier than usual. After that membership reception, we have to rushed home to feed Charlene. Thank God that Rus and Thomas gave us a ride back. and we were able to reach the event on time!

The event was held at a park in Woodlands. It was super hot... but our dear Charlene was able to sleep through the event. Probably was too hot, so her energy was sapped. Nonetheless we were happy to be able to bring charlene out for an outdoor event. It's a first for us! Praise God!

17 - 18 Jun 2011 - The Unpacking

The next 2 days were spent on unpacking our belongings, putting them in the appropriate place, sorting out the logistics arrangement, etc etc...

My mother came and brought us some utensils. She also helped out in some of the cleaning of the bowls and stuffs... After she left, we continued to do the sweeping, moping... 

work work work.

Now that we have our new place, we have to do everything by ourselves. It can be time-consuming, but its a cheerful price to pay for our personal space. We are kinda proud that the move and the unpacking was done by mainly the 2 of us. =)

And throughout the 2 days, Charlene was sleeping in the afternoon. She seems to be aware that we needed to do household chores, and she decided to help us by giving us time to do so. Smart girl... =)

though that means that she was awake at night (3 pm)... making us all more tired... 

16 Jun 2011 - The Move

We engaged a professional mover (Shalom Movers) for the move.

Thank God that the company didn't have a slot for the 8am slot. Because we wanted that slot actually, but it was not available. On hind sight, we would not have been able to finish the preparation by 8am. God must have guided us on this.

They came puncutally at 2pm. They were very, very efficient. They shifted all the 20boxes within 1 hour, including dismantling the bed, and wrapping the big furniture pieces. Dez was in charge of overseeing their job, while I waited with a sleeping Charlene in our soon-to-be-old home.

Everything was shifted into our new house by 4pm. We were very impressed and felt that it was the right decision to do so. Not only did it saved us time, it saved us a lot of effort. We were able to do the shifting with only 2 us involved... if we have gotten our friends, we probably need a lot more ppl.

After we pushed Charlene to our new home, Dez and I quickly worked out a system for Charlene's milk preparation and medicine preparation. 

We also quickly unpack the boxes for essential stuffs...

In the end, we slept very late at around 10 plus.

And our dear Charlene decided to wake up at 3 plus demanding our attention... we were exhausted.

But it's a fruitful day, because its a day that the Lord has made for us... and we have our new home!

8 Jun - 15 Jun 2011 - Packing for the shift

After much packing, and coordinating between our ID (repairing stuff) and our movers, we finally fix a move-in date on 16 Jun.

It took me 2 weeks to do the necessary packing.  Dez helped out during the weekends. All together we have about 20 boxes of stuffs to shift. We were very surprised with the amount of things that we accumulated over 3 years...

Besides the packing, we also have to shop for the necessary miscellaneous stuff such as utensils, containers (to keep charlene's med), detergent, mop, etc.... We also have to allocate time to clean the house, buy a new laptop (so that I can do work in the room when Charlene's sleeping), purchase the broadband plan, test out the modem, etc.... It was tiring and draining to do all these by ourselves (mostly, cos Dez's bro helped out in searching for the best laptop and broadband pricing). We often have to split up to maximise time.

We could have got help from my parents or parents-in-law. We could have got help from our cell-members or our friends, who had volunteered their services. But we choose not to... because we want to learn to be independent. And in a way, it was fulfilling to see our house being prepared by us step-by-step.

Besides independence, we also learnt to trust in the Lord... because we depend on Him for his guidance and energy level to tide us through this busy period.

With God, all things are possible!

P.S. We apologise for the long delay in updating the blog... we were so busy with the packing and shifting that we didn't have time to sit down and update the blog.

Renovation Completed!

We thank God that we found a reliable and responsible contractor whose quote is reasonable.

Our renovation work is almost completed. The color feature walls are good. The bomb shelter is outstanding. And the lights are pretty, bright and reasonably priced!

We also thank God that my friends Cady and Huishan recommended places that sell cheap electrical appliances; Ban Kim Chuan and Maximum Credit.

We thank God that we got a dining table that we are very happy with. A wooden dining table with a tempered glass top, which is small, compact and kawaii.

We also thank our cell group for buying us nice crosses so that we can hang them during house blessings!

7 June 2011

Dez and I went to Rainbow School to attend hydrotherapy enrichment session with Charlene. During the theory session, Charlene was smiling happily. As it was the holidays, the pool was not heated up and was as cold as the public pool. Charlene was clearly unhappy with the cold water and was whining... We did a few simple exercises in the water with her. And about an hour later (when everyone else was still in the water), Charlene shivered so much that we have to bring her to bathe. Once she gets the warm water, she stops whining immediately. And when bath ended, she started again till she got dressed and wrapped up snugly in her pram.

6 June 2011

Charlene broke her uncle's heart by sneezing and turning her head away from him when he greeted her. He was so hurt that he dashed into the bathroom to bathe immediately!

Dear Charlene had only done that to her Daddy previously especially when he comes home after work (drenched in sweat and smelly). Uncle used to laugh at Daddy that he was smelly.

Haha, this is a rather good and simple method to get Charlene to turn to her left (which she normally will not do so willingly).

Our Baptism

Our Baptism

Do u believe in spiritual forces?
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In the morning, we attended service and had holy communion. It was raining heavily before worship and service. That made it more difficult for us to travel to worship/service and to rush back home to feed charlene, before we can go to baptism. Timing was very tight... but God is good! The rain stopped when we were going home after service. Once we reached home, the rain resumed almost immediately.

There was some issue that cropped up from our family side which could have prevented us from going to the baptism. But God is good, cos he helped us resolve the issue!

Then while changing Charlene into her new clothes (to signify a new life in Christ), she vomited. Charlene seldom vomits these days. We spent additional time cleaning her up. Thank God that we have spare new clothes to change her into.

When we reached the pick-up location, there was no sight of the bus. We knew it has left. Pastor Tim called and said they have arranged for people to pick us up. Dez was quite anxious and was contemplating to take cab. But I told him that the church has made arrangements so let's just wait. To our surprise, Rev Ngiam and Pastor Cynthia appeared to pick us up. As the 2 of them were key persons for the baptism ceremony, we would definitely be on time =)

Considering the fact that Bukit Timah was flooding and that baptism location was at 6th Avenue, we weren't sure whether the roads would be blocked. But Rev Ngiam and Pastor Cynthia managed to get advanced notice of the roads that were flooded. Thank God for YMM!

Charlene vomitted again in the car, we were able to use the cloth to prevent Charlene's vomit from damaging Pastor Cynthia's car. Two vomiting within a short span of 1 hour... its very rare for Charlene now. But the 2 of us took it in our stride, because this is the day that the Lord has made, and we choose to rejoice in it!

We thank God that the Holy Spirit broke down the defensive walls of Des's parents and they decided to witness the baptism ceremony. They were initially reluctant, but Des prayed hard and God must have intervened to open their hearts. We will continue to pray for our family and that they will come to know God our Redeemer!

We like to thank God for his wonderful grace and mercy today. We faced numerous obstacles today before our baptism, but through God's grace and the support of YMM members, we are able to complete this important ceremony.

To end it off, we are attaching 2 pictures of the t-shirts that we wore after baptism... Rev Ngiam asked us to wear a new t-shirt to signify a new beginning... and we took her guidance seriously =P

3 June 2011

3 June 2011
Charlene was smiling happily at Dr Natalie throughout the whole visit. Dr Natalie kept telling Charlene how special she is. She is very happy and pleased to see Charlene's progress. Charlene can smile now. Charlene can make noise. And Charlene shows awareness and will make purposeful action such as 'calling' for attention when she is neglected. Dr Natalie also commented that Charlene's tracking has improved!

She said that I do not know how rare it is for children with severe disability to be growing well and having a weight within the 50th percentile. She said that it is a testament of how much care Charlene is getting. I said that it is because God sustains her. So Dr Natalie told Charlene that Jesus loves her!

Then Dr Natalie told us that she is leaving the hospital. However, she kept reassuring me that she is not deserting us and gave me her private mobile number. She also said that I am her friend and can continue to call and SMS her whenever I need medical help! Thank you Lord Jesus for sending Dr Natalie who has been a great blessing in our lives!

Charlene went on the MRT to and back. She was wide awake on the journey and was listening and processing info on the MRT. Thank you Lord Jesus!

31 May 2011

Praise God! We brought Charlene to kkh for her appointment on MRT! Charlene slept through and only woke up when we reached Novena...

27 May 11

27 May 11

Charlene slept late last night again, and we had a hard time getting her to sleep in the morning.  Dez had to take leave today to meet the reno contractors, so I was left with a sleeping Charlene... decided to do my work. 

We received a furniture show-room pamphlet and decided to give it a try. We brought the sleeping Charlene on  the MRT train (and she slept through the journey)  and went to Marseling. Have to take a taxi to reach Homzi Furniture which is located near Woodlands checkpoint.

The show-room is fairly large and have a wide range of dining tables and sofas. We were particularly impressed by a dining table set that meets all our requirements...small, compact and extendable. The sales person was also very patient and gave us a lot of constructive comments. In the end, we bought a dining table set, a tv console and a leather sofa. Still below our budget, so not too bad.

26 May 11

26 May 11

The mover delivered the boxes, and we can finally start packing! Yeah! 1 small step towards moving towards our new home.

Charlene slept through the class today. Her bio clock has changed (again) and she has been waking up at 3am. Dez and I had been getting less sleep bec of the naughty girl-girl.

We told the physiotherapist that the exercise tapes worked... so this time he decided to put more tapes on Charlene, to help increase her muscle tone for the sholuder. This seems the most difficutl part to target, bec Charlene had very little control over her shoulder. If she can improves this, then she is 1 step away from improving her head control.

Lord Jesus, we pray that You bless Charlene with improved muscle control, and that by Your stripes, Charlene will be heal and meet all the developmental milestones of a typical kid.

Charlene and her lycra suit, which helps to improve her muscle tone. The green suit reminds me of Rock Lee, an anime character =)

22 May 11

22 May 11

Our 4th baptism class today, which Rev Ngiam tutored us on the history of Christianity. We learnt a lot of new things today, and the class participated actively asking various tough questions.

Rev Ngiam adopts on a moderate view on things, answering tough questions in a manner that is respectful of other religions.

We pray that God bless us the wisdom to do what is stated in 1 Peter 3:15.

1 Peter 3:15. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect. 

After the baptism class, June, Wanfen, Shiyun and Joanna came to visit us. We had prep Charlene to welcome the jie-jies with a big wide smile... and she did! =) Charlene was smiling happily to them, and responding with cute sounds. Needless to say, they were happy to see Charlene being so active and happy. Looks like only Aud do not have the luck to see Charlene smiling... haha.

17 May 11

17 May 11

17 May was a public holiday, and we decided to bring Charlene back to my parents' place. Considered an outing for Charlene. Charlene was more responsive than the previous visit and made some coo-ing sounds. 

The other purpose of the visit was to collect the bath-room accessories that my aunt has bought for us. After the house visit, we swung by to our new place to store them. Feeling a need to maximise time, we decided to hop down to Sembawang lighting house to purchase the wall lights. 

We decided to split up cos it looked like it was raining.  Dez made his way to the lighting house, whereas I brought Charlene to the shopping centre to change her nappy. Charlene was quite upset about the wet diaper and kept kicking in the cot. As the escalator was slightly inclined downwards, Charlene was almost falling out of the pram. I had to do some gymnastics to hold on to her and the pram at the same time... attracted stares from the other shoppers.

After Dez bought the lights, we shopped around Giant for curtains. It was tough deciding the curtains to buy. Either the colour don't match our color theme or it was too thin and cna't keep out sunlight. In the end, we didnt buy any.

Just as we are about to leave, Lin yen messaged me to say that Starbucks having offer for their frappe at half price! Dez excitedly went to queue for a extra-coffee, caramel frappe. 

All in all, a good and busy day today. 

A year back, we won't imagine this to be possible... going on a shopping trip with Charlene. Things has improved a lot since her discharge... and we thank God for His blessings upon our family. Praise the Lord!

16 May 2011

Charlene has a routine eye checkup today. She is awake and alert. The first optometrist requested that I made Charlene sit upright. But my dear gal immediately went into 'meditation mode'. I told the optometrist that putting her back in the pram is better. And true enough, Charlene opened her eyes and was listening attentively to the tv (which was playing Hi-5).
Eye drops were then dripped to dilate her eyes. The eyedrops must be stingy and uncomfortable. Charlene was pretty upset. She made a lot of sounds and was kicking angrily even when she was carried. She refused to cooperate with the second optometrist. The guy asked if he could tape her eyes. He did but it didn't really help, Charlene refused to open her eyes. After much effort, the vision check was finally done. In the doctor's room, Charlene was smiling happily. Maybe she thinks that the doc is playing with her. Anyway, Charlene is a little far-sighted. The doc still can't tell if she can see. Her tear ducts are not blocked. But it is due to other reasons that she will continue to have eye discharges forming into crust everyday.

12 May 2011

12 May 2011

Thank you Lord Jesus!

Charlene was awake since 2am and by right, should be sleeping. But she didn't. She looked super tired but she did very well in all of her exercises!

Charlene's physiotherapist in school said that Charlene's trunk muscles have developed and Charlene is making bit by bit progress. She wants me to do more to train up Charlene's shoulder muscles. We have been using our bed which is no good for her exercises as it is too soft. A gym mat would be good. But even then, the floor must be clean in the first place.

I know that even if I say that I have 1001 things to do, it seems to be still my responsibility to ensure a clean environment. I know that I should not expect help from others because I am her mother. If the people staying under the same roof refuse to show their love, what more do we expect from our materialistic society?

At the same time, her occupational therapist was pleased with her performance today. He said that she seems to be developing some muscle tone. So, it is from no tone to low tone. Still some progress. So, even though those 'compress muscle' exercises seem insignificant, it looked like they are taking effect. I need to preserve in them!

Dear brothers and sisters, let's pray for a breakthrough in Charlene's condition, that she will continue to develop and acquire cognitive functions like normal children, so that through her healing, God's name may be glorified!

5 May - 11 May 2011

5 May - 11 May 2011 

Here we go again... Charlene's biological clock inverted itself again. She slept through 2 hours of school on Thur. And slept the whole afternoon when my mum visited on Friday. On Saturday, she woke up at 9pm, ready to listen to the General Elections results and didn't go to sleep till the results were all announced. She slept through baptism class on Sunday. Slept through her neurology appointment and 30 mins of sitting and rolling with KKH occupation therapist. Slept through Auntie Madelyn's first visit on Tue.  

So for the past few days, Dez and I went to bed at 9pm. Dez will wake up to feed her milk at 12am. And I will take over from 2am as Charlene will be awake by then. Her eyes are wide open and sometimes she will smile happily as we talked to her. Playing of music will make her happy as well. I am actually quite upset as I find it very difficult to keep awake and find that I can't talk as much to her in the middle of the night, can't make strange sounds, can't play toys with sounds etc. 

While trying my best to stay awake, I will do stretching exercises, exercises that compress her muscles and joints. I will also do rolling and sitting with her. But at around 4am, I will be very tired and I will just doze off and leave Charlene alone. She is quite good and will only start making noise at 5+am, probably because she wants milk. 

Then at 7am, she will look tired and lethargic. And this is where I struggle. I do not know if I should continue with the exercises. I have opted to leave her alone. But she will continue looking tired and eventually only sleep at 10/11am. 

So even though I did a bit of exercises with her, the stimulation is lacking. 

Pray that Charlene's biological clock will go back to normal so that we can do more with her. The OT in KKH just suggested using food such as coffee powder for play - touch, smell, taste...