19 Sept 2012

Charlene made purposeful actions in school today!

As usual during circle time, Charlene is to raise her hand to count to three. She normally would just smile happily at her teachers. But Charlene tried super hard today and managed to lift her wrist! She still lacks the strength and muscle to lift her arm but it is progress! So she did that a few times...

Then at the start of her combined music therapy and physio session, Charlene turned her head from left to right in respond to the drum that her music teacher was playing. And she tried super hard to turn her head to from the right to the left too. So her physiotherapist worked with her head control while the music teacher used different instruments to motivate her. Charlene was so happy when the music teacher played the guitar and sang song, encouraging her to shake the bells tied to her wrist. There were a few times where she jerked her arm in response (She lacks control but she really knows and she wants to move!)

Her teachers are really pleased with her progress. Thank God for His blessings upon Charlene! 

12 Sept 2012

Charlene did her eeg at Nuh this morning. We thank God that we managed to capture data of her sleeping (with and without cpap) and awake. She had a few strained faces and turning of head. The Nuh eeg technologist is a really nice lady. She would answer the questions that we asked. When we voiced out that we aren't sure if those are fits, she said that it doesn't seem like it.

Her interpretation is confirmed by the neurologist. Prof Ong explained to us that those are not real fits. Basically, Charlene's brain is full of activity even when she is sleeping. Her brain is overworked so much so that it has to force shut-down. An analogy would be when we open too many programs on the computer, causing the computer to hang and force shutdown. This explains why Charlene is so tired all the time as she is not truly resting even when she is sleeping. Even though they are not real fits, but because they happened all the time, it is damaging to the brain.   

Though this may not seem like good news, but we are thankful that for the first time, we finally have some knowledge of what is happening to her. The plan is to increase the dosage of epilim (one of the anti-epilectic med that she is currently on) to an effective dosage and then do another eeg to see if there is any improvement. We are going to increase the dosage very slowly; 0.5ml every two weeks so it will take months. Please pray for Charlene that the effective dosage of epilim will be effective in controlling her fits. 

In the event that the effective dosage of epilim proved to be ineffective, Prof Ong suggested adding a new medication that Charlene has not tried before (he said to try those that are less drowsy first). 

For the past few days, Charlene has been more responsive and the increase in muscle tone has been obvious. She is better able to hold her head when sitting and even when in prone. We thank God that we could remove phenobarbitone from her life forever.

Charlene sitting on her own for 20 mins

1-8 Sept 2012

After 3 weeks of cutting phenobarbitone, we finally weaned it off completely. Some changes that we observed in Charlene; she became more awake and aware. Her eyes opened so big that she look more like me than her Daddy now. She also suddenly realised her rights as a kid. She will whine until she gets what she wants (Argh, but because she can't talk, we don't know what she wants).

However, becoming more aware probably also throw her sensory system into chaos. She is easily startled by sudden loud sounds and touch (something that we thought she has gotten over with) We think she needs some time to adjust to the absence of the medicine.

And for don't know what reason, her biological clock went crazy again. She has been awake through the night and asleep through the day. That is taking a toil on us really...