29 May 2012

We saw the sleep doctor today. The statistics of Charlene's sleep is not too well; rather high level of obstructive apnea and also some central apnea. The nice salesman saw the stats and gave me his few cents worth. The high OA might be due to Charlene still using her mouth to breathe rather than her nose and once her mouth is open, the pressure "escape", causing the cpap machine to be ineffective. The solution to this is to change her nose mask to a full face mask. The doctor think so too and orders for a sleep oximetry test before taking any action. However, the danger of the full mask is that Charlene can choke to death on her vomitus or drool as the mask covers her mouth and doesn't allow the vomitus or drool to trickle out. The moment the doctor suggested a full face mask, Charlene immediately choked on her saliva while sitting in her pram. I don't think a full face mask is an option for Charlene due to her inconsistent swallowing and excessive pooling of saliva in her mouth.

Other possible reasons for the bad OA score could be due to the pressure not being sufficient. Action can only be taken after the doctor has determined that it is the case. Last possible reason is central apnea - meaning her inability to sleep well is due to her brain.

While doing the sleep oximetry test at home, there were times that the oxygen in her blood can drop to below 90 but it is still above 85. Got to wait for the doctor's analysis.

Please pray that Charlene will learn to close her mouth and use her nose to breathe when she sleep so that the cpap machine can be more effective in helping her in her sleep.

28 May 2012

Thank God that the Rodeo Chair has arrived! After much modifications (a big thank you to DnR and Teacher Kartheek), it can help Charlene to sit properly (in a 90 degree sitting posture). Can let Charlene sit and do some activities.

27 May 2012

Thank God for His providence! I was asking my tuition boy's mum whether she has any lobang to buy cheaper foam gym mat. And she managed to get second hand free from her friend. On top of that, her friend also gave 2 pieces of lycra cloth (will discuss with school OT to see if it's feasible to make into a lycra swing), some tactile animal toys and a storybook. And my tuition boy's mum was so kind to drop them off at my place on a taxi on her way home from church. I am really grateful! The gym mat would have cost $200.

24 May 2012

Charlene was smiling throughout OT today. Her therapist was very happy. Charlene even rolled on the ball without being too upset. All thanks to the distraction from her favourite toy train. Charlene was put inside the lycra swing and the OT played with her with her hands in midline and her hands in the middle

23 May 2012

During soft play today, I left Charlene lying on the slide and tell her to slide herself down. Teacher taught her that she has to move her butt. Charlene did just that for the first 2 slides and went down by herself. The third time, Charlene started jerking her head backwards and arching her body so that she would slide down faster. It is amazing how fast she can learn all these incorrect things. Hahaha... 

Once more, she was whining to her physiotherapist through the session....

21 May 2012

Charlene was standing in her stander for 20 mins in class. While she was standing with her arms on a table, her teacher wanted her to feel the ice cubes (which has some texture on it). Charlene had such a reaction that she pushed the whole tray away. She also vocalised and indicated that she doesn't want to play with it. Good awareness Charlene!

18 May 2012

Charlene's biological clock shifted again and she was sleeping through the day. I decided to bring her to Nuh by taking the Mrt. We had to change to the Circle Line at Bishan. There was a little inconvenience as I had to look for the directions and the lift. However, the MRT trip only took 40mins. And I spent a total of $6 (including taxi fare from my house to Yishun MRT) as compared to $24 (cab fare from my house to Nuh). It was huge savings.

It was a rather long wait to see the dr. The junior dr was very nice and I liked the fact that he was honest and sincere. He knew it was beyond his capability as Charlene's case is complicated. He was very nice to call his mentor who was even nicer to come down specially to see Charlene even though he was not running a clinic that day. To us parents whose children are special needs, a doctor who has a heart is very important.

14 May 2012

Charlene had her annual eye check today. Structurally, everything's fine but the eye dr is again unsure whether she can see or not (cortical visual impairment; i.e. the neurological connection between the brain and the eyes).

However, after a year, it seems as though Charlene's long-sightedness (meaning she can't see near) has not improved. So the dr asked if we would like to make spectacles to see if it helps Charlene to see better. Her left eye is 600 degrees and her right eye is 200 degrees. I decided to try it out since it may not be that expensive.

9 May 2012

Charlene's fever is gone. Her body should have successfully fight the infection. But the diarrhea was persisting and it has been 6 days. I was hesitating whether to send her to the hospital for a precautionary check. It could mean spending additional $200 or worse being admitted and spending additional $ and exposing her to more germs and viruses. My friends from the support group told me to go. So, I prayed about it and decided to bring her.

Nuh children A&E was rather empty when I reached. After hearing me, the doctor concluded that it should be viral infection. The diarrhea might take a couple more days. He prescribed probiotics and another medicine to harden stools. God then provided an opportunity for us to seek a second opinion by helping us with a referral to see the nuh neurologist. When we got out of the doctor's room, the waiting area was packed. After collecting the medicine, we left. The man at the door was shocked when I asked where is the taxi stand. He asked if I have seen the doctor. Thank God, it only took us 45mins and the trip achieved its purpose.

7 May 2012

Charlene has not been well for the past few days. It started off as diarrhoea on Friday. Her diaper leaked twice in school. But after 4 times of poo, she stopped. We thought it was just stomach upset. On Sat, we bought some probiotics from Guardian and gave her. She poo 3 times, vomitted twice and has mild fever on off.

This morning, she vomitted twice and has poo 4 times. And her fever went up to 38.9 and came down after giving panadol and ice pillow. She has a lot of phlegm in her throat and has been coughing.

Please pray for Charlene's recovery and that her lungs will be protected.

4 May 2012 - Love Gift

We thank our fellow brothers and sisters in Christ for their love gift to Charlene. We thank them for their thoughts and prayers for Charlene. Indeed, just last week I was shocked to receive the quotation for the tumble-form stander which cost USD3.4K. Was still considering and deliberating whether to purchase it or not. So the generosity of our fellow brothers and sisters in Christ came in handy and will be able to pay for the subsidized amount for the stander. God is truly our Provider!

2 May 2012

Charlene is normally quiet in school. Only when she is on the slide then will she make a lot of sounds. I have ruled out the possibility that she is cold by wearing a jacket for her. Nowadays, we don't do counting anymore. I just put her on the slide and tell her to slide down herself. She tried and does manage to slide down herself. Then she will make a lot of sounds to suggest she wants more. 

Charlene doesn't "talk" to her other teachers, Her PT is really priviledged. Charlene is talking to her non-stop throughout the session. I thank God that Charlene responds to sounds and lights and her eyes will follow the source, just got to help her a bit and she will turn her head as well. 

1 May 2012

It was rare that Charlene is awake in the morning. So we decided to bring her out for some sunshine and have a hearty family breakfast. We put on her new sunglasses for her and she was obviously less affected by the sunlight. She looks really cool in it. But we were getting a few stares from passerbys. Hahaha.

Afterwhich, Charlene fell asleep before we went to our church friend's house for housewarming. So Charlene was sleeping soundly on the sofa and Daddy, Mummy had a chance to make popiah together and had fellowship with church friends.