25 April - 30 April 2011

Thank God for a fruitful week. Charlene has gone back to sleep soundly through the night. She will be awake for about 6-8 hours in the day. She has been more positive and happy in sitting (which is good). She also will smile happily for prolonged periods. She also will respond to certain key words. For example, if she hears praises of her being pretty and clever, she will grin. If u scold her naughty, she will protest. If we refuse to pick her up from bed or give her what she wants, she will throw tantrum by kicking her legs wildly. We thank God that Charlene is learning and developing. Yes, she is very slow. She is not a normal child so please don't use a normal yardstick to compare her.

24 April 2011

On this Easter Sunday, we will like to give our praise and thanks to our Living God! We believe in him and that He is in control, for He has conquered death and nothing is impossible to Him. 

We will like to thank God for His guidance in our hunt for a renovation contractor. 

It has been a month since we got our keys. We started off getting contacts from our friends. The first contractor was a straightforward person and was highly recommended by 2 of my frens. It was tempting to go ahead with him, get reno done asap and shift in.

 I was held up by Charlene's visit to the hospital etc and by the time I wanted to call him to confirm the deal, I had a miss call from the 2nd contractor. We decided to give the 2nd contractor a chance, at least to see his quotation. The 2nd contractor's pricing was lower. Also, the 1st contractor did not warn us that our request for a full length wardrobe will not be feasible as it will block out the passage way.

One week passed. And just as we were going to finalise with the 2nd contractor, I was reminded by Holy Spirit  to call HDB to check. Goodness gracious, both of these fellows do not have HDB licenses. They claimed that they have but it is under the name of another company (which they claimed it's the parent company or owned by same boss etc). Oh man. So it's back to square one and we are currently looking at 3 reno companies at Yishun Central. And all the quotations were cheaper than the 1st contractor!

We thank God for His timely intervention! He must have also planned us to go through the different contractors, because we learnt to look out for different things from them, which we will probably not be aware of if we have gone for 1.

22 April 2011

Good Friday!
We brought Charlene to church office to attend our church first Good Friday service. We went through the 7 sayings of Jesus before he died on the cross for us. We reflected on our sins and wrote them on a piece of black paper. Then we used a nail to pierce through it and nailed the paper to a chunk of wood with a hammer. I found this activity to be meaningful. We were reminded of the gruesome death of Jesus. How he was nailed to the cross. But more importantly, we were reminded that through His death, our sins are forgiven. Thank you Lord Jesus for being the sacrificial lamb for us.

21 April 2011

Charlene slept through her second hydro therapy session. She is very clever. She woke up after bathing. It was as if she knew that it was going to be play time in the multi-sensory room and soft-play room. Charlene touched the vibrating beam and looked at the lights happily. When it was time to 'pick diamonds' (basically we left Charlene on those rough textured surface that will prick her), Charlene was 'protesting' with her cute sounds.

Once again at playroom, Charlene responded to Teacher Adeline's cues. After Teacher counted 1,2... Charlene will make a soft 'eh'. We slide her down and then she will 'protest furiously' at he bottom of the slide when Teacher asked her if she wanted more. Really amusing!

20 April 2011

After being so ignorant and stupid last week. I google on swim diaper. Huggies disposable swim pants cost $16.10 for 10. From a website rating, I found Konfidence swim diaper. Dez bought it at Mothercare at $21 after membership discount. It was rewashable, with Velcro and buttons and could fit from 6 months to 3 years. Definitely can wear more than 10 times and pretty design too.

We also bought a new interactive toy. Fisher Price Rumble n Learn Driver. $72 after 10% kiddy palace discount. What I like most about the toy is the vibrating gear, key and steering wheel, which is similar to the school multi-sensory room lava lamp. It also has music, sounds and lights. It is really freaking ex, but for the sake of simulating Charlene....

17 April 2011

Charlene has been showing improvement in her self-regulation. This was something she was really weak in due to her brain injury. I was reminded cos Teacher Melody asked if Charlene has hypersensitivity. When we first brought Charlene home, I couldn't even do the facial exercises for her. Each time u touch her face, her face will 'crumple'. Previously, when she yawned, she will scare herself and then fail to regulate and throws fits. The same happened when she sneezed. But now, this seldom happens. Though sometimes, she still scares herself but at least that did not lead to fits. Praise the Lord!

So it seems that some of the fits were triggered by her inability to self regulate; her brain failed to process that yawning and sneezing are her normal reflexes, and mis-interpreted them as external events.

Charlene is also showing more behavior of a normal child. She seems to be looking for mummy to carry and will cry for attention. She will cry when she has a soiled diaper and goes back to sleep immediately once that is changed.

We thank God for these normal cute sounds that Charlene is making. She never fails to amuse us.

15 April 2011

Charlene started coughing badly. She probably got a cold from her hydro session yesterday. Oh well, can't go to cell group tonight!

14 April 2011

Charlene had her first hydro therapy session today. She was sleeping through half of the session. Teacher Melody taught me the exercises to be done in the pool. Due to less gravity pull, Charlene was able to sit quite well and could even stand. Charlene was awake when I took over from Teacher to demonstrate what she has taught me. Charlene started clenching her fists. I thought she is passing motion as she has this tendency to clench her fists during poo-pooing. But that was not the case when I changed her. Perhaps she was nervous n tense as I was unconfident of handling her in water. But, overall, it was good to see Charlene adapting well to her first experience in a pool. :)

Teacher Adeline brought Charlene to soft-play room and we placed Charlene on the slide again. She responded in the same manner as last week. Cried after coming down the slide and stopped immediately after she is being put back at the top o the slide. Teacher Adeline will count one, two and prompt Charlene to say three. Cute little Charlene will try very hard, some movement in her mouth and when she goes "Eh!", Teacher Adeline and I will slide her down. Once she reached the bottom, Teacher will ask Charlene, "Do you want more?" Charlene will cry and we will put her back at the top. Teacher and I are vey amused and happy with Charlene's responses.

13 Apr 2011

We saw the geneticist today. The reason why I went to see her is because I wanted to let Charlene try the coenzyme. There is a slight chance it may help in her seizure control.

Charlene slept through her whole visit to KKH. She slept through the whole sitting session with her occupation therapist. Oh well, when she wants to sleep, nothing can stop her.

8 Apr 2011

Charlene saw her paediatrician (Dr Natalie Epton) today. She was smiling happily at Dr Natalie and when Dr Natalie was speaking to her, Charlene responded (by making noise). Charlene is growing well. She has grown taller (77cm) and weighs 10.9kg. Thank God for sustaining her. Bear in mind that she is still drinking only 550ml of milk a day (and nothing else, except water and 50ml of pear juice).

Can't remember what we were talking and I started telling Dr Natalie of how I felt yesterday when the therapist said that Charlene is severely disabled. She suddenly hugged me. And she hugged me for a long time. While hugging me, she told me how great a job I am doing. She said that among all the patients she had, no one was better taken care of than Charlene. She said that nobody love Charlene more than I do. She said that what I was doing was honorable. She said that she knew how difficult it was and how tiring it must have been. And she said that God can see what I am doing. She also said that she only gave a few parents her handphone number and she gave me because she knew that I would not abuse this kind gesture and that I care so much for Charlene that I would ask for her help when needed. As she said all these, it touched me so much that I started crying. And she was tearing too.

She said that she celebrate every little progress that Charlene made with us. She said that when Charlene smiled at her previously, she was so happy that she almost cried and she told her fellow colleagues (who all knew who Charlene was) that Charlene smiled at her. And today, her highlight of the day is that Charlene responded ('talking') to her. She said she will go home and tell her husband about it. She also said that she never would have thought that Charlene could make these cooing sounds given her very poor start in life.

I am very touched by Dr Natalie's gesture today. All this while, she has been responding to all my sms queries promptly. I thank God for sending Dr Natalie to us. When we knew that Charlene's paediatrician was her, we were surprised.We hardly knew her when Charlene was in NICU. Dez only met her once and I met her twice. But she really is an exceptional doctor. One who goes the extra mile and shows care, concern, empathy and understanding. Thank you Dr Natalie! We look forward to celebrate Charlene's every milestone with you.

Thank you Lord Jesus for sending us such a great doctor whom we can trust upon!

Life with a severely disabled child

"This blog is partly for me...to have the opportunity to rant somewhere other than in my head...and partly for everyone else out there with severely disabled kids. We are a silent presence in the world. We have few friends, little time, even less help and understanding. Our choices are questioned, our immediate families fractured, extended families unhelpful (at best), medical and educational "authorities" painfully ignorant. We families need to connect with each other." - Opening message from 'Life with a severely disabled child'.

MY PRAYER  
In this moment I accept that I have been given care of a very fragile person.
I accept that I may likely never know why this task has been passed to me.
In this moment, I accept that I need not know more than the fact that what I do has value.

With that, I will care for this person to the best of my abilities.
I will forgive myself for the days I could do better, but don't.
I will forgive myself for the days I would do better, but cannot.
I seek to have clarity of thought that I might make choices most in balance with the many intertwining lives, including my own.
I seek to be supported in whatever ways financial and emotional that will maintain this balance.
I seek to learn how to draw from a well of infinite patience and energy.
I open myself up to the possibility of joy, of fulfillment, and of grace.
I accept that, in this moment, it is all I can do. -  Prayer of the author of 'Life with a severly disabled child'

I found this blog as I was surfing for 'severely disabled child'.

The mother capture it so correctly... that parents with disabled kids are often forgotten and left alone.

Dez and I feel it keenly.

But thank God for our cell members who accepted us so readily and lend us help so easily, despite us knowing them for only a few months.

And thank God for those friends who continue to remember us, and pop by occasionally (in real life or in digital life) to give us encouragement!

7 Apr 2011

Charlene was very cooperative in school today. She did very well in her physio session. So exciting, Charlene is going into the pool next week for her first hydro session.

The OT, who is usually quite nice, sorta 'scolded' me today.   He said that Charlene is severely disabled and we need to do more for her. He must have a bad day. Maybe he is fed up that we are not acting quickly on his suggestions (making Charlene wear tights so as to keep her muscles and joints together, and buying a bench to do sitting exercises with Charlene). Well, I guess we procrastinate a little but we need to specially squeeze time to go and buy these stuff.

Anyway, his words are harsh reality. Not that I am living in denial. But I don't need to be reminded of it so bluntly. I felt like someone has poured a whole pail of cold water on me! Being the main caregiver, I felt solely responsible for Charlene's development. I started questioning if I have been too slack. Whether I could do more for Charlene. I felt depressed. Who really understands what I am going through? (Besides my husband and my overseas support group frens)

6 Apr 2011

Charlene went for her EEG today. She is clever lar. Before and after the EEG, she threw fits. During the EEG, she smiled happily to herself and no fits were recorded. $102... Oh well, it's good to see how her brain waves are like when she is not throwing fits and to see the effect of potassium bromide...

3 Apr 2011

As I was singing the last worship song today (Chinese song), the image of Charlene in ICU flashed across my mind. As I looked at the smiling Charlene I was holding in my arms, my heart was filled with gratitude and my eyes were brimming with tears. I kept thanking the Lord for He is good. Then another image flashed across my mind. I saw Charlene sitting up by herself and us presenting her as a testimony in front of our church congregation.

Hebrews 11:1
Faith is being sure of what we hope for and certain of what we do not see.