Charlene was sleeping when we brought her on a cab to Baby Hyperstore to find her a new pram that could better fit her. She started cooing non-stop on the cab and trashing throughout the whole cab ride from Yishun all the way to Kaki Bukit. Her holidays are coming to an end and we had procrastinated on this matter for a few months.
Baby Hyperstore has got many baby strollers of different brands; Peg Pegro, Quinny, Maclaren, City Joggers etc... We tried a few that could fit her (Peg Pegro P3 Classic, Maclaren Techno XT) but they didn't have much room for growth (in terms of her height). Thus, we probably has to buy the EIO tomato stroller. We tried Charlene in her friend's EIO stroller before and there is plenty of space for growth. So even though it is expensive, it is a long term solution to move her around. Unfortunately, we do not have a vehicle and the Rodeo is too heavy and too cumbersome to keep. But the Rodeo remains the best in allowing her to sit properly.
Saturday, December 29, 2012
Tuesday, December 25, 2012
25 Dec 2012
Our church (Yishun Methodist Mission) held a Christmas cum baptism service at the home of a sister from Hinghwa Methodist church. The kind lady not only kindly opened her house for our usage but catered our lunch as well. She truly demonstrated the Christmas spirit of sharing. Initially, Daddy and I were quite hesitant to go as we had to take the shuttle bus (arranged by our church) and also we needed to feed her milk outside. But we felt that it is more meaningful to celebrate Christmas with our Lord (since it is Jesus's birthday) hence we went. It was a nice time of fellowship with brothers and sisters.
Monday, December 24, 2012
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.
Wednesday, December 19, 2012
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.
Saturday, December 15, 2012
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.
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.
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| Charlene wearing her santarina costume |
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| Charlene with her "christmas hat" |
Saturday, December 1, 2012
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.
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.
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