31 Aug 10
Charlene is in a bad mood. She has a couple of fits, some silent ones. Many people came to disturb Charlene; doctors, therapists and dietician.
The geneticist came and said that perhaps a more detailed choromosome test could be done. But it would cost US$1500. Alternatively, we could take part in a research study conducted in Singapore but must wait for months for the results. She left saying that "Charlene is a mystery and Charlene surprises us".
The surgeon was shocked to see Charlene so chubby and said that her weight gain is sufficient and she shouldn't be drinking more milk cos she is not using up so much energy. The dietician also said that Charlene's growth is on target and she is growing well. Praise the Lord!
Charlene's cough is still phlegmy. I went after the ward consultant and got some new information on why Charlene had so much phlegm. One possible reason was that Charlene was on the respirator for a long time (one month) and hence her lungs her more easily inflammed.
I read something good from the Daily Remembrance that Ah Sang gave us.
"God delivered David from horrible pit; Jeremiah from dungeon, Daniel from lions, Peter from waves and Paul from the forty Jews."
The Lord is good, a stronghold in the day of trouble and He knoweth them that trust in HIM.
He will renew our strength, illumine our path.
Let us wait for HIM in faith, look for HIM in hope and plead with HIM to work in us all the good pleasure of HIS will.
Tuesday, August 31, 2010
Monday, August 30, 2010
30 Aug 10
30 Aug 10
The senior doctor in the ward suddenly saw Charlene's chest X-ray (after a few days) and thought that her heart looked bigger than normal. Charlene was sent for a 2-D heart scan. It was dejavu for me. Not too long ago, they sent her for kidneys ultrasound. I prayed a silent prayer for Charlene as the radiologist went about doing the scan. The expression on the radiologist tells me that something is not too good.
The cardiologist came into the room and took over the procedure. He looked at me and said "Oh, Charlene has grown so big, I recognised her heart!" He disagreed with the radiologist and said that Charlene's heart size is normal. Praise the Lord! And the little hole in Charlene's heart (which most premature babies have) has closed!
However, there's something that might be of concern. Charlene's heart muscle (the one in the middle) is mildly thick. Normal size is 55mm but hers is 56mm. The cardiologist said it's not a big deal but to be safe, they will continue to monitor Charlene. I asked for the cause and he said most likely genetics. I told him the geneticist found nothing that could account for Charlene's fits and gave us open date. The cardio doctor then said he will get the geneticist to relook. He even hypothesized that perhaps some deposits is causing Charlene's heart muscle to thicken and perhaps the same deposits in the brain caused seizures.
Haha, Dez and I have given up on finding the cause for Charlene's condition but if this may shed some light and hence helped in Charlene's treatment, we will gladly accept it.
Lord Jesus, everything is in your hands!
The senior doctor in the ward suddenly saw Charlene's chest X-ray (after a few days) and thought that her heart looked bigger than normal. Charlene was sent for a 2-D heart scan. It was dejavu for me. Not too long ago, they sent her for kidneys ultrasound. I prayed a silent prayer for Charlene as the radiologist went about doing the scan. The expression on the radiologist tells me that something is not too good.
The cardiologist came into the room and took over the procedure. He looked at me and said "Oh, Charlene has grown so big, I recognised her heart!" He disagreed with the radiologist and said that Charlene's heart size is normal. Praise the Lord! And the little hole in Charlene's heart (which most premature babies have) has closed!
However, there's something that might be of concern. Charlene's heart muscle (the one in the middle) is mildly thick. Normal size is 55mm but hers is 56mm. The cardiologist said it's not a big deal but to be safe, they will continue to monitor Charlene. I asked for the cause and he said most likely genetics. I told him the geneticist found nothing that could account for Charlene's fits and gave us open date. The cardio doctor then said he will get the geneticist to relook. He even hypothesized that perhaps some deposits is causing Charlene's heart muscle to thicken and perhaps the same deposits in the brain caused seizures.
Haha, Dez and I have given up on finding the cause for Charlene's condition but if this may shed some light and hence helped in Charlene's treatment, we will gladly accept it.
Lord Jesus, everything is in your hands!
Sunday, August 29, 2010
28 Aug 10
28 Aug 10
After crying the whole day yesterday, Charlene slept through today. She was not awake but she coughed and cried at times.
Her left foot with the IV plug was slightly swollen and the doctor has to remove it and re-insert another plug. However, after 2 doctors tried 3 times, they gave up. They said that Charlene is too chubby and it was too difficult to find her veins. Since no IV plug, they couldn't drip her and have to resume her milk intake to full feeds.
Thank God that Charlene was able to retain her milk and did not vomit.
Lord, we pray that Charlene's cough will go away. Thank you Lord Jesus for the amazing things you have done for Charlene.
After crying the whole day yesterday, Charlene slept through today. She was not awake but she coughed and cried at times.
Her left foot with the IV plug was slightly swollen and the doctor has to remove it and re-insert another plug. However, after 2 doctors tried 3 times, they gave up. They said that Charlene is too chubby and it was too difficult to find her veins. Since no IV plug, they couldn't drip her and have to resume her milk intake to full feeds.
Thank God that Charlene was able to retain her milk and did not vomit.
Lord, we pray that Charlene's cough will go away. Thank you Lord Jesus for the amazing things you have done for Charlene.
27 Aug 10
27 Aug 10
Praise the Lord! Though Charlene is sick, her fits did not increase. Conversely, they were reduced significantly. From double digit (12-15) to now single digit (5-7) daily.
Charlene's fever has come down but she is still coughing very badly. She coughed so forcefully that she puke out her milk and her button starts leaking horrendously. She kept crying pitifully the whole day. She was either upset cos she is unwell and couldn't cough out the phlegm or she wants to be carried.
The doctor halved her milk intake as they were worried that she would keep vomiting and may aspirate.
Praise the Lord! Though Charlene is sick, her fits did not increase. Conversely, they were reduced significantly. From double digit (12-15) to now single digit (5-7) daily.
Charlene's fever has come down but she is still coughing very badly. She coughed so forcefully that she puke out her milk and her button starts leaking horrendously. She kept crying pitifully the whole day. She was either upset cos she is unwell and couldn't cough out the phlegm or she wants to be carried.
The doctor halved her milk intake as they were worried that she would keep vomiting and may aspirate.
Thursday, August 26, 2010
26 Aug 10
26 Aug 10
Charlene is running a fever and cough. On the advice of the pediatrician, we decided to send Charlene into A&E. Our main concern is pneumonia and dehydration.
The doctor at A&E thinks that she is a little dehydrated and she was admitted (we already expected that due to her complex medical condition). At the ward, her fever went up to 39 degrees. I kept sponging her throughout the night.
What was amazing was that despite her fever going up, the fits were not increasing or clustering (which should be the case). On the converse, it was reducing. Thank God for His grace!
Charlene is running a fever and cough. On the advice of the pediatrician, we decided to send Charlene into A&E. Our main concern is pneumonia and dehydration.
The doctor at A&E thinks that she is a little dehydrated and she was admitted (we already expected that due to her complex medical condition). At the ward, her fever went up to 39 degrees. I kept sponging her throughout the night.
What was amazing was that despite her fever going up, the fits were not increasing or clustering (which should be the case). On the converse, it was reducing. Thank God for His grace!
Tuesday, August 24, 2010
24 Aug 10
24 Aug 10
The fussy Charlene is back. She wants to be carried the whole day whenever shes' awake. Dez and I are not sure whether we should be happy or sad that the fusspot Charlene is back. On one hand, she's more awake and is interacting with us through her fusspot cries. On the other, I will be more tired.
The seizures pattern have changed again... Now the seizures happened when she wakes up. At least she's able to fall asleep. The neurologist called back and suggest us to reverse the dosage of Topomax to 4+3 (4ml in morning, 3ml at night).
The fussy Charlene is back. She wants to be carried the whole day whenever shes' awake. Dez and I are not sure whether we should be happy or sad that the fusspot Charlene is back. On one hand, she's more awake and is interacting with us through her fusspot cries. On the other, I will be more tired.
The seizures pattern have changed again... Now the seizures happened when she wakes up. At least she's able to fall asleep. The neurologist called back and suggest us to reverse the dosage of Topomax to 4+3 (4ml in morning, 3ml at night).
Monday, August 23, 2010
23 Aug 10
23 Aug 10
Today is a good day. Charlene slept well in the afternoon and she was awake to play with us in the evening. It's great to see her expressing her emotions - she had some reactions when we made her smell different food (samba sotong, chicken rice, chicken cutlet) and touch different things. She got upset when her Daddy waved Magnum Ice-cream in front of her, as if in protest; she stopped when her Daddy left the room. We hope these actions will stimulate her development.
Bible verse for Charlene today:-
Hebrews 10:23.
Let us hold unswervingly to the hope we profess, for He who promised is faithful.
Today is a good day. Charlene slept well in the afternoon and she was awake to play with us in the evening. It's great to see her expressing her emotions - she had some reactions when we made her smell different food (samba sotong, chicken rice, chicken cutlet) and touch different things. She got upset when her Daddy waved Magnum Ice-cream in front of her, as if in protest; she stopped when her Daddy left the room. We hope these actions will stimulate her development.
Bible verse for Charlene today:-
Hebrews 10:23.
Let us hold unswervingly to the hope we profess, for He who promised is faithful.
Sunday, August 22, 2010
22 Aug 10
22 Aug 10
Was having breakfast when somehow this verse came into my mind.
Daniel 3:17-18, which spoke about Daniel's friends faithful response to Nebuchadnezzar the King (who ordered them to worship his image of gold)
If we are thrown into the blazing furnace, the God we serve is able to save us from it, and He will rescue us from your hand, O King. But even if He does not, we want you to know, O King, that we will not serve your gods or worship the image of gold you have set up.
We decided to separate Topomax and Phenobarbitone because we suspect that there's may be drug interactions. It seems to work as Charlene was able to fall asleep more easily.
Was having breakfast when somehow this verse came into my mind.
Daniel 3:17-18, which spoke about Daniel's friends faithful response to Nebuchadnezzar the King (who ordered them to worship his image of gold)
If we are thrown into the blazing furnace, the God we serve is able to save us from it, and He will rescue us from your hand, O King. But even if He does not, we want you to know, O King, that we will not serve your gods or worship the image of gold you have set up.
We decided to separate Topomax and Phenobarbitone because we suspect that there's may be drug interactions. It seems to work as Charlene was able to fall asleep more easily.
Saturday, August 21, 2010
21 Aug 10
21 Aug 10
The day went badly, with Charlene having >20 seizures. We didn't know what to do. Sending her to the hospital is not useful at all, cos they will only pump in more medications to knock her out. We have been updating the neurologist through his staff nurse, and so far, they told us to keep monitoring.
Oh merciful Lord, please lay your healing hands upon Charlene.
We decided to read a different Bible verse to Charlene everyday. We hope that through that Charlene will hear God's word and be strengthened by it.
Today's verse is from Joshua 1:9.
"Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go".
The day went badly, with Charlene having >20 seizures. We didn't know what to do. Sending her to the hospital is not useful at all, cos they will only pump in more medications to knock her out. We have been updating the neurologist through his staff nurse, and so far, they told us to keep monitoring.
Oh merciful Lord, please lay your healing hands upon Charlene.
We decided to read a different Bible verse to Charlene everyday. We hope that through that Charlene will hear God's word and be strengthened by it.
Today's verse is from Joshua 1:9.
"Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go".
Friday, August 20, 2010
20 Aug 10
20 Aug 10
Thank God that Charlene slept soundly throughout the night and only had seizures at 5am.
I smsed the pediatrician with regards to Charlene's choking. It must be God's grace for me to bump into her at KKH Macdonald and her giving us her hp no. It was really nice and she replied to all my sms queries even after office hours.
Thank God that Charlene slept soundly throughout the night and only had seizures at 5am.
I smsed the pediatrician with regards to Charlene's choking. It must be God's grace for me to bump into her at KKH Macdonald and her giving us her hp no. It was really nice and she replied to all my sms queries even after office hours.
Thursday, August 19, 2010
19 Aug 10
19 Aug 10
Charlene's condition was not too good today. She had clustering - 3 seizures within an hour. But thank God that after I prayed earnestly, she fell asleep at 430pm.
One scary thing happened after she fell asleep. She choked in her sleep and turned purplish. I immediately put her down and patted her back. Some saliva came out from her mouth, and I heard those blockage sound coming from her throat. I immediately did a suction and more phlegmy stuff came out. Charlene looked better after that.
Charlene's condition was not too good today. She had clustering - 3 seizures within an hour. But thank God that after I prayed earnestly, she fell asleep at 430pm.
One scary thing happened after she fell asleep. She choked in her sleep and turned purplish. I immediately put her down and patted her back. Some saliva came out from her mouth, and I heard those blockage sound coming from her throat. I immediately did a suction and more phlegmy stuff came out. Charlene looked better after that.
Wednesday, August 18, 2010
18 Aug 10
18 Aug 10
I received a sms from a friend early in the morning to know about the proposal & engagement. Was really, really happy that I'm one of the first few to know about the engagement. It goes to show that someone still remember me. =)
Charlene's seizures patterns had changed... now, she almost certainly go into it after she fell asleep. Consequently, she had very little sleep and looked very tired.
Charlene had seizures every hour during 5 - 8 am. I prayed to the Lord to break the trend, and my prayer was answered immediately. Charlene was awake from 8+ - 12pm with no seizures. Thank You Lord Jesus!
Read something in the Daily Bread that I want to remember:-
"When we claim one of God's promises in the Bible, we place ourselves in His hands and on His schedule. As we wait, it may at times seem as if the Lord has forgotten us. But trust embraces the reality that when we stand on a promise of God, He remains faithful.
The assurance is in our hearts, and the timing is in His hands."
I received a sms from a friend early in the morning to know about the proposal & engagement. Was really, really happy that I'm one of the first few to know about the engagement. It goes to show that someone still remember me. =)
Charlene's seizures patterns had changed... now, she almost certainly go into it after she fell asleep. Consequently, she had very little sleep and looked very tired.
Charlene had seizures every hour during 5 - 8 am. I prayed to the Lord to break the trend, and my prayer was answered immediately. Charlene was awake from 8+ - 12pm with no seizures. Thank You Lord Jesus!
Read something in the Daily Bread that I want to remember:-
"When we claim one of God's promises in the Bible, we place ourselves in His hands and on His schedule. As we wait, it may at times seem as if the Lord has forgotten us. But trust embraces the reality that when we stand on a promise of God, He remains faithful.
The assurance is in our hearts, and the timing is in His hands."
Monday, August 16, 2010
16 Aug 2010
Charlene was able to puke out 2 clumps of phlegm soon in the middle of milk feeding. This is a significant improvement because it shows that she was able to control her sphincter muscles to prevent from vomiting the milk. Just a few months back, we were worried about the reflux and constant vomiting, but its obvious that Charlene has already went past that stage.
The Lord is good! He has answered our initial prayers (see our prayer list on blog right)! His way is above our ways and though we might not see instant changes, His grace is certain and sure.
Though Charlene's seizures have been creeping upwards, from once per 2 hours to once per hour, we will keep faith in the Lord.
Friends, please help us in praying that Charlene's seizures be kept under control and return to the previous baseline (avg 2 per day) with the current level of medication.
(Charlene in her new sleeveless T-shirt, courtesy of Auntie Wanfen, Audrey and Jiayu)
Saturday, August 14, 2010
14 Aug 10
Our SWAPS friends came over to visit Charlene and bought lots of new clothes for Charlene. Now Charlene has lotsa new clothes.
In fact, she has more clothes than toys now. Which is just as well, since Charlene don't really play around with toys. But she changed her clothes a lot, cos of vomitting.
In fact, she has more clothes than toys now. Which is just as well, since Charlene don't really play around with toys. But she changed her clothes a lot, cos of vomitting.
Monday, August 9, 2010
9 Aug 10
We brought Charlene to a brother-in-Christ, Ah Sang's (refer to 4 Nov 09 post) home on National Day.
We chit-chatted and updated them on Charlene's condition. Ah Sang's wife shared some stories about her difficulties in taking care of Wei Yang during his rehab and we can tell how much she went through. She was able to go through the tough time by drawing strength from the Lord.
Though we were only there for an hour and a half, it was very good sharing. Bec Ah Sang's family went through a similar ordeal, they could understand our difficulties much better than others.
Lord, may You bless Ah Sang and his family with health and recovery. May You bless Wei Yang and protect him from the seizures. They are a Christian family which we would like to model ourselves to; strong in faith despite the difficulties and exemplifying God's Word in 2 Corinthians 12:9.
"My grace is sufficient for you, for My power is make perfect in weakness" - 2 Corinthians 12:9.
We chit-chatted and updated them on Charlene's condition. Ah Sang's wife shared some stories about her difficulties in taking care of Wei Yang during his rehab and we can tell how much she went through. She was able to go through the tough time by drawing strength from the Lord.
Though we were only there for an hour and a half, it was very good sharing. Bec Ah Sang's family went through a similar ordeal, they could understand our difficulties much better than others.
Lord, may You bless Ah Sang and his family with health and recovery. May You bless Wei Yang and protect him from the seizures. They are a Christian family which we would like to model ourselves to; strong in faith despite the difficulties and exemplifying God's Word in 2 Corinthians 12:9.
"My grace is sufficient for you, for My power is make perfect in weakness" - 2 Corinthians 12:9.
Sunday, August 8, 2010
8 Aug 10
We thank God for answering our prayers!
Charlene's biological clock reverted back. She wakes up in the day and sleeps at night.
The number of seizures she has is still around 12 daily. However, the statistics for this week might totally not be useful as Charlene has continuously puked out her morning medicine 6 days in a row. The very first time it happened, Dez said that she is doing it on purpose cos she knows what it is and don't like it. For the 1st few days, I thought it could be that she was having some digestion problems. Then yesterday morning, I split the medicine up, only fed 4 instead of 6 thus reducing the volume from 19ml to 11 ml. Yet, an hour after the medicine, Charlene puked it out and the force she exerted while vomiting also caused the medicine to leak out of her button. I am sure that she did it on purpose. Anyway, cos I split up the medicine, at least the new anti-convulsant medicine is not being puked out.
I saw Charlene smile (on 6 Aug))! She was in good mood as she sat in the car seat happily and smiled at her maternal grandma who was playing with her. I am also thankful to God that she drank water from the spoon and had infant brown cereal.
We also thanked our friends who came to visit Charlene and for their generosity. We also thanked God for sending brothers and sisters to teach us how to better pray for Charlene's healing.
Charlene's biological clock reverted back. She wakes up in the day and sleeps at night.
The number of seizures she has is still around 12 daily. However, the statistics for this week might totally not be useful as Charlene has continuously puked out her morning medicine 6 days in a row. The very first time it happened, Dez said that she is doing it on purpose cos she knows what it is and don't like it. For the 1st few days, I thought it could be that she was having some digestion problems. Then yesterday morning, I split the medicine up, only fed 4 instead of 6 thus reducing the volume from 19ml to 11 ml. Yet, an hour after the medicine, Charlene puked it out and the force she exerted while vomiting also caused the medicine to leak out of her button. I am sure that she did it on purpose. Anyway, cos I split up the medicine, at least the new anti-convulsant medicine is not being puked out.
I saw Charlene smile (on 6 Aug))! She was in good mood as she sat in the car seat happily and smiled at her maternal grandma who was playing with her. I am also thankful to God that she drank water from the spoon and had infant brown cereal.
We also thanked our friends who came to visit Charlene and for their generosity. We also thanked God for sending brothers and sisters to teach us how to better pray for Charlene's healing.
(charlene pouting)
(charlene smiling to grandma. the best picture i could get for her blink-&-you-miss smile)
Tuesday, August 3, 2010
3 Aug 10
Since Topomax was added last Friday (30 July) till now, the number of seizures has reduced but it is still at double digit (11-13). We will probably wait another 2 days to decide if we want to increase the dosage.
Sunday, August 1, 2010
1 Aug 10
From today till Nov, Yishun 10 cinema is undergoing renovation and our church has to shift to Econ Building (in Yio Chu Kang) for the interim period.
As the air-con was not strong enough, Charlene started crying half-way through the worship session and we had to carry her out. Feeding her was also another challenge as we tried to minimize the probability of her vomiting by breaking up the feeding into 2 parts.
Lord, despite the obstacles, we pray that You will provide and that we can continue to praise and worship You and move together with our church.
As the air-con was not strong enough, Charlene started crying half-way through the worship session and we had to carry her out. Feeding her was also another challenge as we tried to minimize the probability of her vomiting by breaking up the feeding into 2 parts.
Lord, despite the obstacles, we pray that You will provide and that we can continue to praise and worship You and move together with our church.
30 July 10
Charlene's neurologist called me in the morning and advised me on the next course of action. Basically, the long term plan is still to take Kappra off for good (since she is only on it once a day for 0.6 ml). For now, to keep the seizures under control and back to the baseline (equilibrium), increase dosage of Topomax (which is the 4th medication that was recently added in June).
So, I increased the dosage of Topomax by 1ml at night.
Tonight, we went to Charlene's friend 1 year old birthday party. The girl and Charlene used to be neighbours in NICU. Am glad to have contact with parents who have children of other chronic conditions. Cos only they truly understand the difficulties and the heart pain of seeing your own child suffer.
So, I increased the dosage of Topomax by 1ml at night.
Tonight, we went to Charlene's friend 1 year old birthday party. The girl and Charlene used to be neighbours in NICU. Am glad to have contact with parents who have children of other chronic conditions. Cos only they truly understand the difficulties and the heart pain of seeing your own child suffer.
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