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.