19 June 2012

Charlene woke up while we were waiting for the geneticist's appointment. She was in a great mood. She smiled happily at Dr Tan and even responded (by cooing) when Dr Tan spoke to her. Dr Tan had never seen Charlene respond and behave in this way. She was quite pleased with what she saw. So was I. Ever since Dr Natalie left, Charlene had not smiled at any other doctor. We have ordered for Qunol liquid coenzyme Q10 to be shipped from US. We will give this a last try (those sold in Singapore are in powder and softgels and are difficult to feed).

Charlene did v well in OT today. Jo is very satisfied with her performance. Jo sat Charlene on the swing again (this time in a more upright position - look at first video as compared to the previous appointment - 2nd video) and Charlene showed more neck control. There is slight improvement in her head and neck control. Jo likes Charlene's awareness and responsiveness towards the toy that makes loud animal sounds.

Well done Charlene!!!

9-17 June 2012

Charlene's biological clock for no reason shifted again. She started waking up at 7pm and it will slowly shift. So it took her a week to shift back to a morning clock. This morning she woke up at 7am and smiled happily throughout worship in church.

Daddy and I joked that Charlene must be waking up to watch Euros (soccer). But we don't even subscribed to it. Hahaha...

7 June 2012

Charlene had a great OT session today with Auntie Jo. She was awake, alert and responsive. Charlene enjoyed herself on the swing today. No wonder she likes Auntie Jo. I like Jo too. She is really good at using play to achieve all the learning objectives. She made Charlene so happy and yet at the same time Charlene is doing head control exercises and strengthening other muscles as well.

6 June 2012

Charlene saw the ENT doctor today who checked her nose and tonsils. There was nothing really wrong with Charlene's nose except a little sensitive and her tonsils are ok too. The Eye Dr has previously referred us to see if her persistent and excessive eye discharges have got anything to do with the structure of her nose. Also the Sleep Dr has wanted us to check if Charlene's tonsils are too big which could be a reason for her worsened sleep apnea. But the ENT Dr has ruled out both.

Charlene closed her jaws super tight when the ENT Dr wanted to put the ice-cream stick in to check. She whined and complained at the Dr who sprayed things in her nose and put a fat scope in to X-Ray her nose...

2 June 2012

After a few days of inverted biological clock, Charlene finally got it right again. She was awake at 7am this morning. Daddy and I were going to have breakfast so I sat her in rodeo and did some sensory play with her; letting her touch a slice of wholemeal bread and cheese and lettuce and telling her that Daddy and Mummy are having sandwiches for breakfast. After breakfast we brought Charlene down to Yishun Park for some sunshine in her rodeo.

We tried to let Charlene play with the slide at the playground below our house but the slide is too steep and it was difficult to let Charlene play. After bath, Charlene had milk. At the start of this hols, I brought back the electronic organ that my brother had. We had been introducing new instrument sounds to her daily. So while she is resting after milk time, I would search youtube and play her the music made by that particular instrument for the day. Afterwhich I would find an opportunity to sit her in front of the electronic organ and choose the option of the same instrument sound to play a few songs. Charlene really likes music; can tell from her face that she is listening attentively. And quite consistently, once the music stops, she will make noise.

We have listened to trumpet, harmonica, flute, harp, violin, drums, pipe organ. I never knew that music from harp is so beautiful.

Also found some educational songs singing about shapes and colors etc.

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.