Charlene went for her OT (occupational therapist) appointment. She was quite well behaved. Though she was reluctant, she did all her exercises without much whining. At times, she had her happy face and looks like she was smiling. Jo was really pleased and happy with Charlene. She told me to get a toy with a light to help Charlene in fixation and tracking objects.
The dietician is also pleased with Charlene's growth. Praise the Lord! Charlene's weight is in the 75th percentile (If you read our blog entry a year ago, her weight was only in the 3rd percentile). Her height is in the 50th percentile. Apparently, Charlene is still not having enough water so some adjustment has to be done. We can also expose Charlene to different fruits and hence taste; besides apple, we can expose her to prune, pear, peach and red cherry which would help in constipation .
Monday, January 31, 2011
Sunday, January 30, 2011
30 Jan 10
Would like to share this song with everyone - the lyrics are so encouraging to us. May it encourage all who are in times of trouble and trials.
Everlasting God
Strength will rise as we wait upon the Lord
We will wait upon the Lord
We will wait upon the Lord (repeat)
Our God, You reign forever
Our hope, our Strong Deliverer
You are the everlasting God
The everlasting God
You do not faint You won't grow weary
You're the defender of the weak
You comfort those in need
You lift us up on wings like eagles
Everlasting God
Strength will rise as we wait upon the Lord
We will wait upon the Lord
We will wait upon the Lord (repeat)
Our God, You reign forever
Our hope, our Strong Deliverer
You are the everlasting God
The everlasting God
You do not faint You won't grow weary
You're the defender of the weak
You comfort those in need
You lift us up on wings like eagles
Saturday, January 29, 2011
29 Jan 10
Thank God that Charlene is better today. Though she still sleeps a lot, she is better than yesterday.
Charlene's dry cracked lips also looked better (after Teacher Adeline from Rainbow School told me that frequent wetting may made it worse and my research confirmed it).
Charlene's skin around the button is improving and is less dry due to the application of moisturer (it just suddenly struck me to do so).
However, Charlene continued to have a lot of eye discharges. Her tear duct is definitely blocked. We have been massaging to no avail. We are praying that the tear duct be unblocked so that Charlene does not need a more invasive way (surgical) to unblock the duct.
Charlene continued to have seizures everyday (about 10). We are still praying for potassium bromide to work.
When Charlene is more awake, she is happier and smiling more frequently. She is also making more strange sounds. That day (27 Jan), she uttered new sounds during bathing, something that sounds like "po chu". And it is apparent that she is upset whenever we say bad things about her. E.g. Charlene is smelly and she will start to 'eh eh'. Charlene also moved her arms in greater range and shift herself more in her sleeping positions.
The fact remains that she still doesn't achieve her developmental milestones like sitting up by herself, rolling. And yes, thinking of it makes me depressed. But, I am still thankful for all the little things that Charlene can do and will continue to hope in the Lord!
Charlene's dry cracked lips also looked better (after Teacher Adeline from Rainbow School told me that frequent wetting may made it worse and my research confirmed it).
Charlene's skin around the button is improving and is less dry due to the application of moisturer (it just suddenly struck me to do so).
However, Charlene continued to have a lot of eye discharges. Her tear duct is definitely blocked. We have been massaging to no avail. We are praying that the tear duct be unblocked so that Charlene does not need a more invasive way (surgical) to unblock the duct.
Charlene continued to have seizures everyday (about 10). We are still praying for potassium bromide to work.
When Charlene is more awake, she is happier and smiling more frequently. She is also making more strange sounds. That day (27 Jan), she uttered new sounds during bathing, something that sounds like "po chu". And it is apparent that she is upset whenever we say bad things about her. E.g. Charlene is smelly and she will start to 'eh eh'. Charlene also moved her arms in greater range and shift herself more in her sleeping positions.
The fact remains that she still doesn't achieve her developmental milestones like sitting up by herself, rolling. And yes, thinking of it makes me depressed. But, I am still thankful for all the little things that Charlene can do and will continue to hope in the Lord!
Friday, January 28, 2011
28 Jan 10
Charlene is down with flu. She is quite sick and keeps sleeping through the day. She is so tired that she doesn't even cry to complain of her wet gauze.
At 7pm, Charlene's temperature was a little low; 36.0. We were concerned. So we prayed and brought her down to the GP. Thank God that later in the night, her temperature went back to normal.
At 7pm, Charlene's temperature was a little low; 36.0. We were concerned. So we prayed and brought her down to the GP. Thank God that later in the night, her temperature went back to normal.
Thursday, January 27, 2011
27 Jan 10
While Charlene sleeps, I have been surfing the net with my iTouch. Sometimes on useful things like medical stuff, toys, clothes, medical supplies. Sometimes on useless things like football news etc.
While searching for 3M durapore tape, I found a medical supply shop near Dez's workplace. We didn't manage to get the tape as it is out of stocks. The sterile gauze there is the cheapest that we have bought so far; 60 cents per packet. Though the brand is different, it doesn't really make a difference. Saves us a lot of money. We bought it at Polyclinic at 90 cents each. KKH sells it at $1.05. So for 100 packets of gauze, we saved $30. That's a lot.
Then, while surfing for whether cereal can be fed through the feeding tube, I stumbled upon a forum thread with the term 'granulation tissue'. It was an all too familiar term and I decided to just clicked and read it. From there, I found 'My button buddies', a washable pad that can be worn around buttons to absorb the leakage. One selling at $5. In the long run, it would be cheaper than buying the gauze. Also, it saves the hassle of cutting the gauze. Most importantly, I hope it will absorb better than the gauze so that Charlene's skin (the area around the button) can be better. Have placed an order for some of them, waiting for them to be shipped over.
While searching for 3M durapore tape, I found a medical supply shop near Dez's workplace. We didn't manage to get the tape as it is out of stocks. The sterile gauze there is the cheapest that we have bought so far; 60 cents per packet. Though the brand is different, it doesn't really make a difference. Saves us a lot of money. We bought it at Polyclinic at 90 cents each. KKH sells it at $1.05. So for 100 packets of gauze, we saved $30. That's a lot.
Then, while surfing for whether cereal can be fed through the feeding tube, I stumbled upon a forum thread with the term 'granulation tissue'. It was an all too familiar term and I decided to just clicked and read it. From there, I found 'My button buddies', a washable pad that can be worn around buttons to absorb the leakage. One selling at $5. In the long run, it would be cheaper than buying the gauze. Also, it saves the hassle of cutting the gauze. Most importantly, I hope it will absorb better than the gauze so that Charlene's skin (the area around the button) can be better. Have placed an order for some of them, waiting for them to be shipped over.
Tuesday, January 25, 2011
25 Jan 2011
Charlene visited the cardiologist today. The doctor felt that there was no need for ultrasound so only did an ECG. Results normal. During ECG, something amusing happened. Charlene was crying when the electrodes were placed on her. Bec she keeps crying , the ECG can't be done. While i was cradling her to pacify her, the lab tech held her hands. Once she did that, charlene stopped crying immediately. The lab tech was so amused and ask whether charlene always liked to be held.
Charlene was awake throughout the hospital visit and was whining in her pram. When my mil and I were having lunch, Charlene suddenly coughed and vomited. Luckily, I was fast enough to tilt her to her side.
The moment Charlene reached school, she started to sleep. No matter what we did to her, she continued to sleep. She slept through the physio session, slept in the pool of colorful balls, slept in the multi-sensory room. The teacher said that Charlene is clever, using this tactic to 'skip' class.
Charlene was awake throughout the hospital visit and was whining in her pram. When my mil and I were having lunch, Charlene suddenly coughed and vomited. Luckily, I was fast enough to tilt her to her side.
The moment Charlene reached school, she started to sleep. No matter what we did to her, she continued to sleep. She slept through the physio session, slept in the pool of colorful balls, slept in the multi-sensory room. The teacher said that Charlene is clever, using this tactic to 'skip' class.
Monday, January 24, 2011
24 Jan 2011
Charlene woke up at 550am whining. I picked her up and sat her with her back leaning on my tummy. After some time, I put her on the bed and wanted to roll her. She cried. I carried her but she continued crying. I sat her again, she stopped. Later on, my mil came in to carry her. She cried. So she sat Charlene and Charlene stopped. Amazing, the Charlene who wants to be carried all the time now wants to be seated! Thank God!
Sunday, January 23, 2011
23 Jan 2011
We brought Charlene to church today. Our cell mate Alicia volunteered to carry Charlene while we worshipped God and listened to he sermon. Charlene was v contented in Auntie Alicia's arms. She sat there quietly throughout worship and sermon. We are so glad and happy. The moment Charlene reached home, she cried.
Saturday, January 15, 2011
Recent photos
 |
| Charlene doing her sitting exercise |
  |
| "Mummy, I'm tired... can we stop exercising?" |
 |
| A brooding Charlene in the dark. |
 |
| Charlene is crawling... not yet, though it looks like so. |
 |
| "Stare what stare, punch you ah!" - Charlene angry look |
Friday, January 14, 2011
13 Jan 2011
Charlene had an appointment with her neurologist today. Before we saw the doc, Charlene shit all over her Barney suit and then vomit and leak and cry. When we saw the doc, Charlene had a happy face throughout. She is really a good girl. I told her many times at home to smile at the doc as it will probably be the last time she is seeing him. The doc is going to study and the next time Charlene will see a senior doctor.
Actually, I wanted to request for the doc's help to get the senior doc. But I didn't even need to as he has
already done that. Thank God. We pray that the senior doc will be able to do more for Charlene in seizure management.
There are some changes to Charlene's medication to cope with the increasing seizures. Dosage of potassium bromide is doubled while topiramate is halved. We pray towards full seizure control.
Actually, I wanted to request for the doc's help to get the senior doc. But I didn't even need to as he has
already done that. Thank God. We pray that the senior doc will be able to do more for Charlene in seizure management.
There are some changes to Charlene's medication to cope with the increasing seizures. Dosage of potassium bromide is doubled while topiramate is halved. We pray towards full seizure control.
12 Jan 2011
Thank God for an extremely fruitful day. Charlene woke up at 530am smiling happily. I did some stretching exercises and sang songs with her. She went back to sleep at 830am and the fits came punctually every hour. I managed to do 5 min of rolling in between when she awakened after her fits. Foe the first time, Charlene was carried the least and sat the longest on her own. I also played toys with her and played her new songs.
It is good to hear her make so much sounds and expressing her preferences.
It is good to hear her make so much sounds and expressing her preferences.
11 Jan 2011
Charlene went to school today. Thank God for that it was cloudy and not raining so that my mil and I could push her in the pram to school. Charlene was generally cooperative in doing the exercises.
Our friend Alicia brought Pastor Francis to us. Pastor Francis spoke God's Word into his son's life for 4 years and God changed his son's life dramatically. When his son was 4, his hearing was severely impaired and that affected his speech. His son could only scream and not speak. The therapists gave up on him. But after 4 years, his son could speak and even came in top of the English Oral. Afterwhich, his son continued to excel exceptionally in school and could speak very well.
Pastor Francis encouraged us to speak God's Word into Charlene's life daily.
Our friend Alicia brought Pastor Francis to us. Pastor Francis spoke God's Word into his son's life for 4 years and God changed his son's life dramatically. When his son was 4, his hearing was severely impaired and that affected his speech. His son could only scream and not speak. The therapists gave up on him. But after 4 years, his son could speak and even came in top of the English Oral. Afterwhich, his son continued to excel exceptionally in school and could speak very well.
Pastor Francis encouraged us to speak God's Word into Charlene's life daily.
Sunday, January 9, 2011
9 Jan 11
9 Jan 11
Charlene was a very good girl to her Mummy and Daddy during worship. She was very awake, alert and attentive throughout the songs and worships and (surprise) during Pastor Timothy sermon too. She whined a little when the songs stopped, which is her typical self.
She was also surprisingly alert throughout the day. She only slept at 7plus. Seems that she had settled into this new cycle; wake up at abt 5-6am, whine a little & demand to be carried, nap for abt an hour in the afternoon, sleep in the evening and throughout the night. Its much easier to care for her in this routine cycle as we don't have to wake up in the middle of the night.
We are counting our blessings for her new routine cycle. We are not taking it for granted bec we know how things can change quickly. I found a MPEI online support group and been reading a lot of stories. From the stories, Charlene could have turn out to be much more difficult to handle. We know that God is with us throughout this difficult period of affliction.
However, her seizures frequency is a cause of concern. Whenever she sleeps, her freq will go up to once a hour. That's very scary as the timing is very accurate i.e 8pm, 9pm, 1005pm,1115pm. Lord, we prayed that You extend Your healing hands upon Charlene and cure her of the seizures. By your stripes, let Charlene be healed! Amen.
Charlene was a very good girl to her Mummy and Daddy during worship. She was very awake, alert and attentive throughout the songs and worships and (surprise) during Pastor Timothy sermon too. She whined a little when the songs stopped, which is her typical self.
She was also surprisingly alert throughout the day. She only slept at 7plus. Seems that she had settled into this new cycle; wake up at abt 5-6am, whine a little & demand to be carried, nap for abt an hour in the afternoon, sleep in the evening and throughout the night. Its much easier to care for her in this routine cycle as we don't have to wake up in the middle of the night.
We are counting our blessings for her new routine cycle. We are not taking it for granted bec we know how things can change quickly. I found a MPEI online support group and been reading a lot of stories. From the stories, Charlene could have turn out to be much more difficult to handle. We know that God is with us throughout this difficult period of affliction.
However, her seizures frequency is a cause of concern. Whenever she sleeps, her freq will go up to once a hour. That's very scary as the timing is very accurate i.e 8pm, 9pm, 1005pm,1115pm. Lord, we prayed that You extend Your healing hands upon Charlene and cure her of the seizures. By your stripes, let Charlene be healed! Amen.
8 Jan 11
8 Jan 11
Charlene was a good girl today. Despite her typical fussiness, she was in a good mood. We were able to play with her.
We finally found a toy that Charlene likes, her squeaky hammer! You know, those sound that baby shoes make. We have been able to elicit responses from her consistently for the past week. Everytime we hit the hammer, Charlene will give the excited and happy face. In fact, Charlene maintained the expression for more than 5 minutes! This has been the longest time that we have seen her having her expression. Praise the Lord!
Charlene was a good girl today. Despite her typical fussiness, she was in a good mood. We were able to play with her.
We finally found a toy that Charlene likes, her squeaky hammer! You know, those sound that baby shoes make. We have been able to elicit responses from her consistently for the past week. Everytime we hit the hammer, Charlene will give the excited and happy face. In fact, Charlene maintained the expression for more than 5 minutes! This has been the longest time that we have seen her having her expression. Praise the Lord!
Tuesday, January 4, 2011
4 Jan 2011
Charlene's daily frequency of fits has been increasing. It is to be expected if she is really suffering from MPEI (migratory partial seizures). It is just bad that potassium bromide seems to be losing its effect already. We will continue to commit and wait upon the Lord for His deliverance.
Something nice happened today. During our 3 hr visit to KKH, Charlene did not cry. She was totally nice and cooperative. She did not cry during the taxi rides and sat quietly in her pram during the hospital visit. My mil and I were pleasantly surprised. It is the first time that Charlene was so good outside and for such a long period of time. Perhaps, we might have a chance to dine outside with Charlene...
We saw the ENT doctor. I wanted to find a cause and possible treatment for Charlene's phlegm problem. The doctor said that she has a lot of phlegm due to the accumulation of saliva at the back of her throat since Charlene is unable to swallow consistently (because of her brain damage). The only 'treatment' is to train Charlene to swallow more consistently (spoon-feeding exercises as recommended by the speech therapist).
The doctor also said that Charlene has a high risk of getting pneumonia as the saliva could just trickle down the wrong tract into her lungs. After hearing that, I was grateful to the Lord for blessing and protecting Charlene till now. Indeed, I thank the Lord each day that Charlene is alive. Many of the children with MPEI died due to pneumonia.
Something nice happened today. During our 3 hr visit to KKH, Charlene did not cry. She was totally nice and cooperative. She did not cry during the taxi rides and sat quietly in her pram during the hospital visit. My mil and I were pleasantly surprised. It is the first time that Charlene was so good outside and for such a long period of time. Perhaps, we might have a chance to dine outside with Charlene...
We saw the ENT doctor. I wanted to find a cause and possible treatment for Charlene's phlegm problem. The doctor said that she has a lot of phlegm due to the accumulation of saliva at the back of her throat since Charlene is unable to swallow consistently (because of her brain damage). The only 'treatment' is to train Charlene to swallow more consistently (spoon-feeding exercises as recommended by the speech therapist).
The doctor also said that Charlene has a high risk of getting pneumonia as the saliva could just trickle down the wrong tract into her lungs. After hearing that, I was grateful to the Lord for blessing and protecting Charlene till now. Indeed, I thank the Lord each day that Charlene is alive. Many of the children with MPEI died due to pneumonia.
Sunday, January 2, 2011
2 Jan 2011
Charlene slept through worship today and woke up in the middle of the sermon. Surprisingly, she did not cry and was listening attentively till the end of service. It is one of those rare times that she is awake and not crying.
Charlene slept through the afternoon and We decided to wake her up in the evening so that she would not wake up in the middle of the night. At 8pm, we put her in her pram and went to Northpoint. Charlene looks overwhelmed as she listens to the new voices, see the lights and smell new scents. She has the 'what's this' look but she did not cry. When we were in Cold Storage, I took some fruits for Charlene to touch. I took her hand to touch the avocado and she was furious. Haha, she didn't like the rough skin. Some customers were looking at me, probably thinking that I am crazy.
Yeah! Our first time going shopping as a family! Thank you Lord Jesus!
Charlene slept through the afternoon and We decided to wake her up in the evening so that she would not wake up in the middle of the night. At 8pm, we put her in her pram and went to Northpoint. Charlene looks overwhelmed as she listens to the new voices, see the lights and smell new scents. She has the 'what's this' look but she did not cry. When we were in Cold Storage, I took some fruits for Charlene to touch. I took her hand to touch the avocado and she was furious. Haha, she didn't like the rough skin. Some customers were looking at me, probably thinking that I am crazy.
Yeah! Our first time going shopping as a family! Thank you Lord Jesus!
Saturday, January 1, 2011
Reflections for 2010
As we entered 2011, we spent some time reflecting upon the events of 2010.
God has been good to Charlene and us. We like to highlight 12 things in 2010 that we are grateful to God for:-
1) Strength in adversity (2009-2010). Doctors gave her very little chance of survival but Charlene consistently exceeded their expectations. The registrar and consultants did not think that Charlene was able to breath without machine support; God sent us signs telling us to go ahead without worries and sure enough, Charlene is able to breathe without the need for support. God also protected Charlene from harm and helped her to survive 4 incidences of choking.
2) Successful operation (28 Jan). Due to Charlene's extremely bad reflux, she had to go through a operation to put a feeding 'button' into her stomach. The preferred operation is the key-hole operation because its less invasive. The surgeon said that it was a difficult operation for a small baby, and they might had to adopt a simpler but more invasive surgery. We prayed to the Lord before and during the 4-hr operation. The key-hole operation was a success.
3) Healing of hernia (15 Apr). Because of Charlene's constant crying, a hernia was formed around Charlene's button. The worst case scenario necessitate a surgical operation. We and our fellow brothers and sisters in Christ prayed that the hernia will healed by itself, and God answered our prayers!
4) Decision on usage of steroids (13 May). Due to the large increase in seizures, the doctors recommended us to use steroids for Charlene. The side effects include the suppression of the immune system. We were very troubled and we prayed and asked for signs. God responded; her seizures dropped dramatically and we decided not to use steroids. This decision was proven correct 3 months later; the doctors found that Charlene's heart muscles is slightly thicker. The current condition is ok, but if we had used steroids, it would impact her negatively.
5) Incredible weight gain (31 Aug). Charlene's weight was initially at the 3 percentile. Because of the constant vomiting, the doctors instructed us to give her small amount of milk (about 3 times less than normal babies). Amazingly, with the low amount of milk she consumed, her weight slowly and steadily increase to the 50 percentile. To the extent that we have to watch her weight now and control the milk amount. Even the doctors were surprised by her weight gain! Praise the Lord, He must be providing subsistence to Charlene!
6) Stopping of clustering fits (3 Oct). When Charlene was admitted to the hospital for clustering fits throughout the whole day, we had to admit her into the hospital. We sms out prayer requests to a few brothers and sisters and to Pastor Timothy. Pastor Timothy in turn forwarded the sms to all cell group leaders to get everyone to pray. Amazingly, Charlene fits stopped soon after our smses. The Lord must have answered the prayers of our brothers and sisters in YMM.
7) Surprise entry to Rainbow Centre (16 Sep), Charlene only waited for 3 months to get a place in Rainbow Centre. That was really surprising for us bec Rainbow Centre typically had a waiting time of 6 months - 1 year. God must have plans for Charlene in the school. The physio and teachers had been very helpful and provided us with lotsa practical advice.
8) First year Birthday Party (17 Oct).
What is required for a successful first year birthday party? Families, friends, decoration, birthday cakes... For Charlene, it also requires a lot of divine intervention.
- Charlene was only discharged 4 days before the planned date; we were already making plans to cancel it bec the buffet catering needed 3 days notice for cancellation.
- In the early morning before the birthday party, Charlene was crying non-stop from 230am to 645am and from 9am to 12pm. We were so worried that she would continue crying at the top of her voice during the party and the celebration would be meaningless. We prayed to God that He bless Charlene with peace and calm during the party. Miraculously, Charlene stopped crying the moment we brought her into the party. She didn't cry nor throw tantrum. We were even able to chit-chat with our friends during the party.
9) Recovery from reflux (22 Nov). Charlene's reflux condition is a constant worry for us because of the danger of choking and the constant vomiting. We were very happy when the doctor declared that Charlene's reflux condition has become very minimal. We were even able to switch into a milder and cheaper reflux medication.
10) A stroll as a family (3 Dec). We were able to push Charlene in the stroller and took a stroll to Bernard's house. That was our 1st time taking a leisurely stroll as a family, without need to worry about our arms breaking =)
11) Celebration of Christmas outside the hospital (24 Dec). Charlene was admitted to the hospital on 21 Dec due to vomiting of bile. The typical length of Charlene's hospitalisation is about 2 weeks, and that would mean that we would spend Christmas in the hospital again. We prayed to God that we are able to celebrate Christmas outside the hospital. True enough, we were able to sing Christmas carols to her in the comfort of our home.
12) Watch-night service (31 Dec). This is a first for us as individuals and as a family. The 2 of us have never attended watch-night service before. And to be able to do that with Charlene, its great joy! Charlene was crying intermittently but we were able to be there for the whole night. We also received help from Alica Chang, Christine and Phe Mie. So we as a family spent the first moments of 2011 in Lord's abode and we hope to continue doing that for the rest of 2011!
We are also thankful and grateful to all church-mates and friends for your spiritual, emotional, financial and physical support throughout the past year.
Though at times, things can be difficult and tough, God always provide us with people who would lighten our load. The little smses, visits, thoughtful gifts... are all very important to us. Even though we can't be as active as before, and cannot participate in activities and keep in touch as often, we hope that our friendships can still remain.
May God bless you all with an abundance of peace and health for 2011!
Subscribe to:
Posts (Atom)