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.