Tuesday, May 31, 2011

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...

Friday, May 27, 2011

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.

Thursday, May 26, 2011

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 =)

Sunday, May 22, 2011

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.

Tuesday, May 17, 2011

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!

Monday, May 16, 2011

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.

Thursday, May 12, 2011

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... 

 

Monday, May 2, 2011

Questions, Questions

"Why don't you just leave Charlene in the care of others?"


Some of the people around us have given us the above comments, in various forms.

"But oh, you can contribute much more to the society if you go back to work."

"Hey, are you sure you don't want your life back? Going back to work will help you maintain contact with the world."

"Don't you need the money? It will be financially better if you go back to work. Don't worry, you can always employ a maid, or even 2 maids to help you take care of the kid."

We understand they may have good intentions.. but they don't realise that we have choose to care for Charlene ourselves, to the best of our ability, at least for this 3 years. Until my no-pay-leave is up, when we will need to re-evaluate our plans.

The worst thing for us is we can sense that that underneath their comments, is their assumption that:-

 "Why do you want to waste your time on something that will not yield any returns?"

Because Charlene is our child.

We cannot choose how our child was born like, but we can choose how best to care for her. There might come a time when financial situation force our hands... but for now, we choose to take care of her with me at home.

Just like other things in life, we cannot choose our parents and siblings. Our parents may grow old and feeble, our siblings might get into trouble, but as family, we choose to standby them if that happens. We choose not to evaluate our actions in purely practical terms... is there anything wrong with that?

We wonder whether this is a reflection of the nature of our society, the drive to succeed at all costs, and to put intangible things on the way-side. Do we choose to ignore the sick, feeble, disabled and the aged, because they cannot contribute anymore?

We pray that we will become a more inclusive society, able to accept the fact that the less fortunate are also deserving of our attention. (Note: Despite Charlene's medical condition, we do not view us as unfortunate, because we try our best to manage, and has manage through God's blessings).

To end off, just like to share a comment from a mother the online support group (who has 2 kids with seizures disorder):-

The family we have is not the family we though/dreamed/hoped/ or expected we would have but it is still our family they are still our children and we are still their parents being gifted the job/role of caregivers/parents to all 3 of our children

To make ourselves feel some what thankful (eg think of the glass half full or half empty case) we keep in the back of our minds some people are unable to have their own children and go through their lives childless and would give anything to have children – maybe even children like our MPEI kids

it just makes us think the glass is a little e bit full (has some drops in it) not nearly empty – it keeps us having thoughts that are positive not negative thoughts that are productive not destructive and that is how we have “played the hand we were dealt”

Indeed, we try to play our hands in a manner that we deem best. Please don't compound matters with discouraging comments.

Sunday, May 1, 2011

1 May 2011

We started our baptism class today.

2 months ago before we registered for the classes, we were quite worried whether we can cope with back-to-back service + baptism class. Our initial plan was that I will attend the classes this year, and Dez attend the next year's one, so that one of us will be around to take care of Charlene.

But thank God that Charlene is doing well enough that we are confident of bringing Charlene to the baptism classes together. That means that our family will be able to be baptize together! Thank God for giving us strength!

The month of May will be an exciting one. Pray that God will grant us strength. With renovation, work and baptism classes as well as needing to go buy furniture and what not for the new house, it will be a very busy month indeed....