1 Nov 10

1 Nov 10

Thank God for His abundant grace today! So many amazing things happen....

This morning, Charlene woke up and started to whine and whimper again. But she was awake and was looking around in the taxi. For the first time, she did not cry in the taxi journey. I told the taxi uncle that he is going to strike Toto for my daughter has never failed to cry in a taxi journey! 

Initially, at the Eye Centre in KKH, Charlene is looking around but shortly, she started to whimper and it escalated to loud crying just at the moment when her eyes were to be checked. The optometrist told me to calm her down first. After like 20 mins, she was still crying on and off. The nurse came and said that if Charlene kept crying, we would have to come again another time. I told Charlene to cooperate.

Then all of a sudden, she stopped crying. Amazing! And in the short period (10 mins) that we were in the doctor's room, she was totally cooperative. The doctor used the analogy of a camera (eyes) connected to a computer (brain) using a cable (linkage) to illustrate the problem. At the moment, the camera which is Charlene's eyes are working fine. So the problem could be the brain or the linkage. The doctor said that nobody is sure whether Charlene can see or not but she told me to treat Charlene like a normal child and continue to expose her to visual stuff.

We then brought Charlene to the Children Surgery Centre. Cos we did not know what cause Charlene to cry, we thought might as well check if the button is fine. Normally, Charlene would wake up and start crying the moment we put her on the table for the doctor to examine. She slept throughtout and the doctor was quite pleasantly surprised. Again, she never failed in crying on the table of the surgeon.

The surgeon is pleased yet again with how well Charlene's button site is being taken care of. I told her that I needed to raise some concerns that might not be related to her specialty but she was very helpful and willing to listen. I told her about Charlene's excessive crying for the past few days and our hypotheses; reflux, phlegm, spine. After hearing that Charlene would stop crying when in prone position, she too said that reflux could be a possibility and asked if I would like to send Charlene for the barium swallow test to check. However, if it's really due to reflux, the only solution is re-surgery (re-do the fundoplication).

She said that it could also simply be Charlene's brain condition. And after hearing that the seizures are hardly happening, she said that Charlene's awareness might be heightened (which is good). But external stimuli could possibly irritate her quite a bit (too things like noise, clothes sticking to her skin) and caused her to cry. Last but not least, she might be having some pain somewhere. She proposed giving Charlene some panadol. If she stops crying, that suggests that Charlene is really experiencing pain somewhere in her body. However, if she continues to cry, then it might be due to the brain.

After that, we brought her to Ward 66 and the nurses were very helpful and did a suction for Charlene. The nurse said that Charlene doesn't have a lot of phlegm.

Thank God for the surgeon and the nurse who went the extra mile to help us!

Later on at home, when I carried Charlene and sang songs to her for half an hour, she did not cry. She was listening to me attentively. I was very happy and thankful.

Yesterday in church, Wendy told me that her mum said that Charlene might be experiencing cerebral irritation. While surfing for more information on this condition, I stumble upon a blog and it was a major discovery! The blog was also a journal from the parents of a girl who had migrating partial epilepsy. Whatever was described sounded so familiar to what Charlene had gone through. "No known cause found. All genetic, metabolic tests and other tests came back negative. The child has some good days (few seizures) and bad days (a lot of seizures). The child is on many anti-convulsants but they don't seem to control the seizures. The child has many medical complications". The blog provided many useful information that the doctor had and could not have told us.

Thank you Lord for today.