24 Jan 10

24 Jan 10

Today is the first time that Dez saw Charlene controlling her super-frown to the extent that her breathing became very shallow and quick. She breathed so quickly in the manner of Liang Po Po ; it was kindda scary. I have seen this reaction a few times when I ordered Charlene to control her super-frowns.

Dez said that this Liang Po Po style of control is the strongest evidence that the super-frown is not seizures. There’s no way that Charlene can control her seizures if it happens. So whatever the cause of super-frowns, Charlene can control her response to it so it’s definitely not seizures. Hallelujah! Praise God!

23 Jan 10

23 Jan 10

The doctors attributed the super-frowns mainly to reflux and didn’t say anything much. We formed a few hypotheses ourselves; feeding tube is bigger which caused more throat irritation or reflux is causing more damage or Charlene’s swallowing has regressed, she cannot swallow her salivia, causing more phlegm to accumulate or she’s irritated.

In the hospital, Dez prayed to the Lord that the Holy Spirit be with Charlene and to chase away the evil spirits inside her. For a few moments, she seems to be responding well and could control her super frown. But after that, she has another episode and the nurse suctioned her. All of a sudden during the suction, Charlene coughed out 2 large mass of gooey milky-white phlegm. That shocked us because the nurse has been doing suction the whole day and couldn’t get the phlegm out. Dez felt that the Holy Spirit is chasing away the evil spirit residing in Charlene and hence she coughed out the phlegm.

The nurse also taught us how to do hands and legs exercises for Charlene. She seemed to enjoy the exercise and is alert. But she tires out after 30 mins of simulation and falls into a deep sleep.

21 Jan 10

21 Jan 10

The frequency of Charlene’s super-frowns is scary. Though the duration has shortened and her recovery is very fast, it’s still a concern to us. The doctors were notified. Nothing much they could do, they attribute it largely to her response towards the pain caused by the reflux and said it should go away after the op. We pray that with the op, the reflux and the super-frowns would be eliminated from Charlene’s life forever.

19 Jan 10

19 Jan 10

To prepare for the op and ensure that Charlene would not have those choking episodes, she was transferred back to NICU. It was obvious that Charlene is really unhappy. She was sulking.

The surgeon spoke to me regarding the op; the risks involved the procedure and the complications. She said that they will try the keyhole procedure first as it is less invasive. However, as Charlene is so small, technically it would be difficult. In the event that the doctors think it would endanger Charlene’s life, they would switch to do an open op instead. We sent sms to our friends to get them to pray that the keyhole procedure of the op can be done successfully.

18 Jan 10

18 Jan 10

Charlene had another bad choking episode. This is the 4^th time God saved her. We decided without hesitation that we should send Charlene for the op.  

15 Jan 10

15 Jan 10

Charlene performed a ¼ turn. We were really amazed. She was super determined and tried very hard for 20 mins before she did it. Once again, we thank God as it is evident that Charlene has the capacity to learn!

13 Jan 10

13 Jan 10

The consultant in charge of the month, Dr Gomez came to speak to me. He said that he will speak to senior surgeon to review operation procedure, risk and success rate. He re-emphasized that operation would reduce reflux, reduce chances of choking greatly. Leaving Charlene as she is now exposed her to the risk of choking and aspiration, pneumonia and chest infections.

He also said that he is monitoring the super-frown (which started on 11 Dec and will happen on average twice a day, the pattern is also evolving). He explained to me that the super-frowns are related to reflux and not seizures (but I am too stupid to understand what he is saying).

Then he said he was one of the first who noticed Charlene’s jitteriness on that first morning. He said he was not sure it’s seizures and thus put Charlene on the EEG. The EEG results showed the worst seizures he had ever seen in his 30 years of doctor career. It was so bad that they called the previous head of neurology back to discuss the case. Praise God that the seizures are kept under control with one medication!  

Charlene is really a strong kid. We saw the nurse doing suction on her. Though she flinched a little, she was quite calm and did not cry. At the end, we saw tears in her eyes. Other babies would have wailed throughout the suction.