Friday, January 27, 2012

27 Jan 2012

Charlene woke up as the bus was 2 lanes away from school. The reckless driver suddenly braked and Charlene smiled happily at the sudden jerk.

Charlene's classmates were not around and we went to the class next door for Circle Time. Charlene love crowds and were smiling happily. It was the first time the teachers next door have seen her smile and they were very happy.

Charlene chose her spider as usual. During playtime, I chose a turtle that has techno sounds and bright lights beaming. Charlene is supposed to raise her hand to touch the turtle when the music and lights stop. She did raise her hand twice.

During sensory time, Charlene was made to feel the rough skin of the mandarin orange, smell the orange. She then played with the pulp; meshing and squashing it with her hands. Teacher Adeline did a great job guiding Charlene. Charlene was smiling happily throughout. Teacher Adeline put her fingers into her mouth and her tongue as well as jaws had movement and she was tasting and swallowing. It was great! The teachers were very pleased with her.

Charlene smelling the mandarin orange
Charlene tasting the mandarin orange

And once again, when it was time to sing goodbye song, Charlene began to 'protest' and doesn't want to go home.


Wednesday, January 25, 2012

25 Jan 2012

Charlene woke up when Circle Time was going to start. She was happy and smiled throughout. She chose all the toys she wanted by moving her hand away from the toys she did not want. Teacher Dhila took a windmill toy and played with Charlene. Charlene smiled happily as the windmill starts to turn and stop smiling almost immediately as the windmill stops turning.

Charlene's classmate's parents were amused to watch a smiling Charlene. When it was time to say goodbye, Charlene whined and kicked (throw tantrums) as she didn't want to go home.

Everyone is glad to see a smiling and awake Charlene!
Thank God!!!!

Tuesday, January 24, 2012

CNY

Charlene was awake during our visits; first day to her maternal grandparents and second day to her paternal grandparents house. She seemed to like her maternal grandfather who played with her making strange sounds. And always pretend to sleep with her maternal grandmother who always want to make her do exercise. My mum woke her from her sleep and made Charlene so 'furious' that she kept making noise.

She liked her paternal grandmother cos she get cuddled and did not do anything at all.

Tuesday, January 17, 2012

First day of CPAP machine

Charlene was put on the CPAP machine today. Bec she was sleeping in the afternoon, I put her on the CPAP during the day.

The CPAP seems to work well! Charlene slept at about 9am, and she woke up at about 8pm. That's considerably shorter than her usual sleep durations. Also, she was much more alert during her wakefulness, and was awake till 4am.

Praise God for the CPAP machine!

Feeding exercise

For the past 2 weeks, Charlene was awake in the evening. That gives me and Dez opportunities to do feeding exercises for Charlene.

Doing feeding exercise for Charlene is tough. Bec Charlene head control is poor, we need to hold her head up by ourselves. It's very difficult for me to do the feeding exercise by myself. With the 2 of us, Dez will sit her up while I feed her with the spoon. We feed her cold water and sometimes even blend punpkin. And she loves it and keep drinking.

We noticed an improvement in her mouth control after the few days of exercise. Praise God, and we pray that God will continue to help her in improving her oral control.

Thursday, January 12, 2012

Cpap trial

Charlene went for a cpap trial today to test out her suitability for a CPAD study. The study allows the sleep technician to determine the type of mask for Charlene.

The mask has to fit in snugly on Charlene. At the same time, Charlene must feel comfortable enough to go to sleep. Charlene was sleeping during the study so it was easy to put the mask on her.

The Sleepnet Mini-me mask was tested and it fitted just fine. The sleep technician recommended 3 brands of CPAP machine. In the end, we chose the Philips machine bec it's more compact and easier to handle. If we travel, it will be easier to bring the machine out with us.

Guess how much is the CPAP machine? The whole machine will costs us above $2000. Looks like all the equipment associated with special needs kids are above $2000....

Thursday, January 5, 2012

5 Jan 2012

My parents came to visit. Charlene and I went downstairs to meet them cos my mum wanted to look at the morning market. Charlene was initially interested in the buzz and sounds in the market. However, after an hour, she was bored (I guess) and the final straw was when we settled down in a coffeeshop for lunch. She was totally glum. She likes a moving pram and more so in the park then a supermarket or coffeeshop.

Wednesday, January 4, 2012

4 Jan 2012

After I told Charlene that her school is going to start on Wed, she somehow managed to adjust her biological clock such that she wakes up at 6am and sleeps at 1 noon. Charlene was half awake in class. Around 230pm when it was time for play (her favourite slides), she was so tired and cranky and began to cry. She is either cold or the lights in the playroom are too bright. I left her in a dark tunnel (less cold and dark) which I named it "the oven" and she calmed down. Her teachers were amused.

New school term

Charlene has started her new school term in rainbow centre (YPS). The class composition has changed, with her good friend (Humairah) graduating to a higher level. So Charlene has new classmates, 2 boys Zhenxi and Jerell. Charlene wasn't interested in young boys, it seems as she sleeps through her class. She only like boys that are older and more mature. :)

Her routine is still the same, song time in the beginning followed by playroom, followed by therapy or hydro.

This year there's a lot of public holiday on monday so she will be missing a lot of classes. Thank God that her physiotherapy session is on Wed so she won't miss too much of her physiotherapy classes!


Tuesday, January 3, 2012

3 Jan 2012

Obstructive Sleep Apnea

Charlene saw the Sleep Dr today and got her first ever diagnosis - Obstructive Sleep Apnea. She was sleeping when I pushed her in. The doctor was interested and started observing her. His clinical observation of Charlene's breathing and chest movements is that of obstructive sleep apnea which fits in with the simple 3-day sleep oximeter data that we had previously collected. He also witnessed one of those strange episodes (that we record as atypical fits) and said that it is not fits. Most likely, Charlene was aroused from her sleep due to a lack of oxygen from her closed airway. He said operation of tonsils and adenoids are unlikely. He proposed two solutions. The best is for Charlene to wear a mask when she is sleeping (known as the Cpap). This will ensure her airway remains open when she sleeps. However, the doctor thinks that Charlene is unlikely to tolerate it. The second best solution is to give her oxygen. This does not keep the airway open and merely helps to ensure the organs have sufficient oxygen.

This diagnosis did not come as a surprise to us. Rather, we thank God that now with the expert confirming it, we can take measures to help Charlene. We have long suspected that Charlene has sleeping disorder. However, when I told the neurologist that I want Charlene to do a sleep study, he brushed it off by saying that children with neurological issues will have problems with sleep. Thank God for opening the way. Charlene was blessed with Dr John Choo, cardiologist, who was keen to find the cause of her mildly thick heart muscle. After sending us to the geneticist and getting nothing, he suspect that it might have something to do with sleep and referred us to the Sleep Dr. We thank God for Dr John Choo (basically doctors who go the extra mile). We are going to try Charlene on the Cpap for a month to see whether she can tolerate it while we wait to do a more detailed and comprehensive sleep study in April.




Sunday, January 1, 2012

1 Jan 2012

We started the year praising God and partaking the Holy Communion in morning service. Then we went to our favourite mall (Sembawang Shopping Centre) to shop. We had ice-cream at Mof and went to our favourite Daiso. Charlene slept throughout.

Review of 2011 - God's blessings

Review of 2011

2011 has passed. The year has been a period of transition for our family, and indeed God is with us whenever we need Him. It's important for us to count our blessings because it cultivates a heart of thanksgiving, and gives us strength and hope for the year ahead. We thank God for the 8 important events in 2011.

1) Baptism (6 Jun 11). This was the most important event for our family... Baptism is an important ritual for all Christians as it signifies our re-birth with Jesus Christ working in us and through us. Though the event was a simple affair in a private swimming pool, the process wasn't easy as we have to brave through the storms, flood & nausea (Charlene's vomitting) to get to the place. But with God's blessings and with the help of our YMM brothers and sisters, we were able to get there on time. It was a joy to be singing with joy at the baptism ceremony, and with our parents and sibling (1 side of the family at least) to be supporting us for this event. Praise be to God!

2) Our New Home (16 Jun 11). From the renovation, purchasing of furniture, cleaning, shifting, unpacking and cleaning (again) the 2 of us did it mostly by ourselves. There is a huge change in lifestyle as we juggle between caring for Charlene (hospital therapy, going to rainbow school) and doing daily household chores. But thank God for giving us strength to continue this independence...!

3) Charlene's increasing awareness. We have noticed that Charlene is more aware of her surroundings now, which was shared by some of our cell-members who have been observing Charlene. Charlene makes a lot of coo-ing sounds now when she's upset or excited. We actually can check how awake she is from the intensity of her 'complains' after a bath; if she doesn't complain, it means that she's totally asleep and if she's making a lot of noise with flaying arms and legs, it means that she's fully awake! Charlene is also making some progress in her responsiveness. In 2010, she was able to smile when prompted. In 2011, she is able to make coo-ing sounds and raise her hands when prompted. Though all her responses are usually delayed and inconsistent, it still cheers us when she raise her hands to say hi to her daddy.

4) Therapy and more therapy. We thank God for opening up pathways to new therapy techniques. Frankly speaking, we don't have much energy to seek out new therapies for Charlene.... but God works through other ppl to help us in finding new therapists and techniques, like private physiotherapy (from the TV program 'I see you - A caregiver story') and Neurosuit training.

5) Family Bali Trip (4 Nov 11)! Our family went for an overseas trip in Bali! This would have seem impossible a year back... but God prompted us to give it a shot, and we managed it! The trip was smooth, with some minor inconsequential hiccups. Me and Des enjoyed the little walks and restaurants meals in Bali. With God, all things are possible!

6) Charlene's good health.  Charlene has managed to stay healthy throughout the year. We only have to go to the hospital once, which is a huge reduction as compared to 2010.  Sure, there are minor ailments throughout the year, but that's natural for normal babies. Charlene is now at a healthy weight of 12.1kg and 85cm. For the paltry amount of milk that she's drinking, she must have been sustained by God :)

7) Care and Concern. God has blessed us through the people around us. We have been receiving a lot of care and concern from our friends - church cell-group and friends. Our cell-group organised a house-warming gathering,  Charlene's 2nd birthday party and various small social activities. Our friends came to visit us regularly, giving us a break from our normal routine. These visits are important to us as its not easy for us to bring Charlene out to other social functions.

8) Support from Friends. Besides TLC, many friends have supported us in more concrete manners. This include 'baby-sitting' Charlene when we are busy, providing free hair-cuts for Charlene, giving Charlene a life-time supply of birthday cakes, helping us buy overseas medical supplies, giving Charlene pretty clothes and toys, bringing Charlene and us out for a night ride... thank you all for your help! We are still trying to get a balance in our life... we promised to be better friends for all of you in 2012.