28 Nov 2012

Praise God!

Charlene's eeg this morning has shown improvement. Dr Ong and his junior doctor and sleep technicians viewed the video plus the associated eeg. The many episodes that she has during sleep has been confirmed by Prof Ong that those are not fits but sleep disturbances (arousals that you and I also have). Thats a huge relief for us, as we have been counting them as seizures. Dr Ong instructed us that we will work towards cutting off potassium bromide in 2 months time so that she only has one medication (epilim).

We pray that Charlene can be weaned off potassium bromide successfully and that she will have a breakthrough in her cognitive development! Please continue to uphold her in prayers that God will heal her brain and that she will not have sleep-related problems.

I am grateful to God for such great news a day before my birthday. God is gracious and kind to me despite me being so lack in faith. Just as the Bible says in 2 Timothy 2:13 "if we are faithless, he will remain faithful..."

Also want to say a big thank you to my friends from the support group for remembering my birthday and    for treating our family to a scrumptious 9-course Hokkaido meal.

16-26 Nov 2012

It has been a very unproductive first week of school holidays for Charlene. Her sleep pattern has become so erratic and totally unpredictable. Throughout the week, she has been waking in the middle of the night (don't know whether it's due to hunger or wet diaper or whatever other reason). And she is not awake enough in the day to do anything productive.

Then there is the never-ending drilling (Open-net installation) and renovation works that arouses her from her sleep. And once she is awakened (but still tired and grouchy), she has great difficulty going back to sleep. This really sucks. I spend all the time trying to get her to sleep (so I have no time for chores and any other things) but she can't sleep. Yet I cannot do exercises nor play with her as she will either be super angry or has totally no response.

Please pray for Charlene. That she can sleep soundly through the night and be awake and alert in the day.

15 Nov 2012

Charlene had OT today. Despite having flu, Charlene did very well. She was able to hold her head up for 17 secs while in prone position on the gym ball! Well done Charlene! A new record!

Charlene also tried moving her arm to tap on the toy while lying on her side. The exercises that Jo did with Charlene were the exact same exercises that Teacher Melody has planned for Charlene for the holidays! (I didn't even ask Jo to demonstrate them). God must have a plan for Charlene.

8 Nov 2012

Feeding Clinic

Charlene had feeding clinic today. She weighs 13.6kg and is 90cm tall. Her weight is in the 50 percentile and her height is only in 10 percentile. The dietician has increased her feeds slightly to ensure she gets sufficient nutrients.

The speech therapist said that her oral hygiene is good (to my relief). Thank God for the disposable oral swabs and for the Health Promotion Board toothbrush which Auntie Joanna bought for Charlene. The SLT didn't have any sour stuff with her and my dear girl refused to cooperate and didn't swallow the cold water in her mouth.

I also discussed with the gastro doctor and the speech therapist about Charlene's rather frequent choking of saliva incidents when she is shifted from a lying to a sitting position. I asked if it could be due to reflux. The doctor said that there is a possibility that Charlene is having reflux but an upright position should help reduce the reflux and hence choking. Both of them thinks that it might just be saliva pooling in her mouth and hence causing her to choke. Charlene was smiling cheekily as the doctor said that and that amused the doctor. She said "Look at that girl. She is saying they finally got it huh. Well done."

Meanwhile, Charlene's anti-reflux medicine dosage is being increased to better manage her condition. Maximising the dosage of the medications is the first thing to do. If her condition worsens, she might need to go for a test to determine the severity of the reflux and the next course of action. The worse scenario is to do the fundoplication again (surgery). We pray that Charlene will learn to control her sphinter muscles and that God will heal her of her reflux.

5-6 Nov 2012

Charlene went to stay in KKH today for sleep oximetry tests, which was recommended by her sleep doctor.

There has been some changes to Charlene's tolerance level towards cpap after the removal of phenobarbitone. Hence there may be a need to give her oxygen during sleep (gasp! additional equipment!)

Before that, the sleep doctor needed to find out
1. her oxygen levels when she is sleeping
2. the lowest that her oxygen level will fall to when desaturation occurs. This will in turn determine whether Charlene needs to be given oxygen when she is sleeping.
3. the carbon dioxide levels when she is sleeping

The results showed that Charlene continued to have desaturations when she was sleeping; 5 per hr. This has improved since the last test where she had 7 per hr. The good news is even though her oxygen levels dropped, the drops were not critical. Her lowest oxygen level during sleep was 91.
Also, her carbon dioxide levels were normal which meant that even without the cpap, there would be no adverse impact.

So the sleep doctor recommended that we continue to use the cpap. If she cannot tolerate, we can take it off as she will be fine.

We thank God for the reassuring news! And we thank God that we were discharged within a day! (we were prepared to stay till Wed, but our prayers to God worked!)

Continue to pray that God will heal Charlene's sleep apnea. The cpap has lost its effectiveness due to Charlene's mouth breathing. Yet, we can't change to a full face mask as there is a high risk that Charlene will choke on her secretions when she is sleeping. Hence, we are out of options to help Charlene and can only rely on God's healing.