24 Dec 2012

There was more Christmas spirit for us this year thanks to the caroling by Yishun Christian Church. It was a good initiative by them. They went door-to-door to give out leaflets in our estates prior to Christmas Eve but I forgot about it. At 9pm, we heard loud cheers downstairs and pop our heads out of the window to see a group of people in red on an open roof double-decker bus. They shouted in unison that they are here for the caroling and asking us (the residents) to join them downstairs. So Daddy put an awake Charlene in the baby carrier and I grabbed a blanket and we headed downstairs. They sang a few carols, gave out a Christmas gift comprising sweets, chocolates and a CD of Christian songs and went to the next destination.

18 Dec 2012

After the cutting down of potassium bromide, we noticed Charlene exhibiting more episodes of straining and sudden loud cries. In the past, we would have classified them as fits. But during the previous EEG recordings, the EEG showed that they were not fits. 

Worried about the increase in such episodes, we called the hospital last week. The EEG lab tech readily helped us to arrange for an appointment with Prof Ong. We are really thankful to the EEG technologist for so promptly arranging for us this appointment.

On the advice by the lab tech, we recorded the episodes on our camera. Prof Ong saw the videos and heard our descriptions. He said that they don't look like fits to him, as Charlene do not freeze completely. To him, it sounded like Charlene was exhibiting behavioural problems, aka unhappy and crying. When Prof Ong gave his assessment, Charlene gave a loud "ummmhhhh" as if she agrees with the assessment. We were very amused.

Prof Ong commented that Charlene is exhibiting more movements, which is a good sign as it is better than being completely unresponsive. He also commented that Charlene cognitive age is probably around 3-months old. 

That is completely within our expectations, as we know Charlene's range of movements and behaviours is inline with that of a 3-month baby. But we continue to thank God for His blessings on Charlene. Every little thing in Charlene's life are bonuses to us, as we do not have any prior expectations for her. We pray that God's plan includes her complete recovery, but even if that is not the plan, we will love her as God loves us. We pray to God to bless us the strength to continue down this journey.

15 Dec 2012

Christmas party for special needs children

Today we attended a Christmas party organised by a group of special needs mums for special needs children and their families. Our special children has been so blessed by strangers. A grandma of a special need boy offered her condo poolside as the venue, a couple kindly sponsored and catered delicious food for us and another mum made hair clips for the girls.

It was a comfortable setting and the progress of some children inspired and encouraged us on. Even looking at some other children who may be worse off, it allowed us to count our blessings of what we have in our child. Also, our children will no longer be judged according to the society's standard (milestones). Here, we celebrate every smile, every sound made, every little gesture that our little warriors can do. Our children have taught us a lot with their own strength and perserverance in their fight against all odds. They have opened our eyes to the cold reality, the selfishness of mankind. But more importantly, they taught us the meaning of true love.

It is so easy to say "I love you". But when you have to give up your job, when you have to forsake your lifestyle, when you know your efforts may not reap rewards, when your child can never care for you when you are old, when you know you might never hear your child call you mummy or daddy, eat or walk or run or do any simple thing that a normal child can do, will you still love them? Love is not just talk. My child taught me what it means to love. Now I can better relate God's love for us. "For God so loved the world that he gave his one and only Son that whoever believes in him shall not perish but have eternal life". God loves us even when we do not acknowledge him. He loves us even if we keep failing and doing wrong things. He loves us so much that he gave Jesus as a sacrifice to save us.    

Charlene wearing her santarina costume

Charlene with her "christmas hat"

1 Dec - 14 Dec 2012

The cut in potassium bromide has yielded good and bad effects. Charlene's reaction time has improved. She will cry loudly if her needs (wet diaper, hungry) are not met. The moment the diaper is changed or milk is fed, she will stop crying immediately. Also, if she has not played enough of her music toy and we stopped playing, she will protest by shouting.

The bad news is her biological clock is totally screwed. She can be awake for 16hrs and sleep for the next 1.5days. And she tends to be awake through the night. It has really been very difficult to do anything productive with her. It is truly holidays for Charlene. The worse thing is her intolerance towards the cpap only worsens her sleep apnea.

We do not know what has caused her sleep patterns to become so erratic and whether it could be the result of a reduction in potassium bromide. Her neurologist was away on leave the whole week. Please pray that God will grant Charlene good quality sleep and that she can be awake in the day and asleep at night.

28 Nov 2012

Praise God!

Charlene's eeg this morning has shown improvement. Dr Ong and his junior doctor and sleep technicians viewed the video plus the associated eeg. The many episodes that she has during sleep has been confirmed by Prof Ong that those are not fits but sleep disturbances (arousals that you and I also have). Thats a huge relief for us, as we have been counting them as seizures. Dr Ong instructed us that we will work towards cutting off potassium bromide in 2 months time so that she only has one medication (epilim).

We pray that Charlene can be weaned off potassium bromide successfully and that she will have a breakthrough in her cognitive development! Please continue to uphold her in prayers that God will heal her brain and that she will not have sleep-related problems.

I am grateful to God for such great news a day before my birthday. God is gracious and kind to me despite me being so lack in faith. Just as the Bible says in 2 Timothy 2:13 "if we are faithless, he will remain faithful..."

Also want to say a big thank you to my friends from the support group for remembering my birthday and    for treating our family to a scrumptious 9-course Hokkaido meal.

16-26 Nov 2012

It has been a very unproductive first week of school holidays for Charlene. Her sleep pattern has become so erratic and totally unpredictable. Throughout the week, she has been waking in the middle of the night (don't know whether it's due to hunger or wet diaper or whatever other reason). And she is not awake enough in the day to do anything productive.

Then there is the never-ending drilling (Open-net installation) and renovation works that arouses her from her sleep. And once she is awakened (but still tired and grouchy), she has great difficulty going back to sleep. This really sucks. I spend all the time trying to get her to sleep (so I have no time for chores and any other things) but she can't sleep. Yet I cannot do exercises nor play with her as she will either be super angry or has totally no response.

Please pray for Charlene. That she can sleep soundly through the night and be awake and alert in the day.

15 Nov 2012

Charlene had OT today. Despite having flu, Charlene did very well. She was able to hold her head up for 17 secs while in prone position on the gym ball! Well done Charlene! A new record!

Charlene also tried moving her arm to tap on the toy while lying on her side. The exercises that Jo did with Charlene were the exact same exercises that Teacher Melody has planned for Charlene for the holidays! (I didn't even ask Jo to demonstrate them). God must have a plan for Charlene.