30th May 2010, Sunday
One of the Parent's Nightmare is when child fall sick. After discharged, janelle was down with fever, running nose, throat infection and had some rashes on her limp. passed one week was hub and my nightmare.. Saturday she had rashes on her limp, i guessed was due to the dust at home as noone clears it. but sunday she was down with fever, hub is kind of reluctant to sent jx to hospital, but to calm me down, we went to kkh.. and it was confirmed not due to the new drugs we given to janelle and it was viral fever. and kkh diagnosed her as H1N1 .. yes, hub and me looked and each other puzzlingly.. according to the doctors at emergency dept, as now there are more than 50% chance of a child with flu, they will be treated as H1N1 and given timaflu. we took turns to wake up in the night to check her fever, feed her fever medicine to ensure her temp does not hit high. I didnt gave janelle timaflu as i dont think she had H1N1, and also because i worried the side effects of timaflu, furthermore janelle already on so many drugs why must add on more which we dont have a confirmed diagnosed that she had H1N1.
And after one week of leave accompaning Janelle in hospital, i have hundreds of emails at work to clear.. and a couple of UAT to work on that has tight timeline. haiz... to take care of sick janelle and work at the same time, it is really kind of hard. lucky i have a couple of good colleagues who helped me to cover my work.. helper who helps to look after janelle during day time.. hub to accompany janelle to fall asleep while i took a few hours each night to complete on the pending issues. so still manageable with a few hours lesser in sleep and it was a tough and long week for me.
MIL returned from her holiday from china on wednesday, and she called us at 1am telling us that she is coming over to sleep over... haiz... no choice, i need to wake my helper up at 1am to clear the bed for MIL, and woke hub up to pick her up from downstairs with all her bags.. she brought back some 拜拜 thingy for Janelle, and she asked me to do it for jx for 3 days... on friday when hub found out + cranky janelle due to her running nose, hub throw a big fuss over it.. and blamed MIL for bringing such things into the house. she was scolded by hub.. since then, MIL had not called to chat with jx. i was in a dilemma whether to continue the 拜拜 for the next 2 days.. after a deep thought, i did it when hub went out jogging... to me is, as long as it can bring good sign to jx, no matter how stupid it is, i will do it... giving a hope. silly me right??
Sunday, May 30, 2010
Saturday, May 22, 2010
22nd may 2010, Saturday
Feeling so gulity, we slept thru Janelle fits previous night. The system n video caught her having a couple of fits previous night and neither hub nor myself realised it. Omg. Lucky wasn't those super long one... There is no miracle in this world, Janelle is put in anti fits drugs again.
After further analyst by doctor, he managed to classific the type of seizure and new drug is introduced to Janelle. One side effects is prompt to develop kidney.stone but according to him it works better on this type of seizure which comes with jerking.
One good news is we are discharging today.
-- Post From My iPhone
Feeling so gulity, we slept thru Janelle fits previous night. The system n video caught her having a couple of fits previous night and neither hub nor myself realised it. Omg. Lucky wasn't those super long one... There is no miracle in this world, Janelle is put in anti fits drugs again.
After further analyst by doctor, he managed to classific the type of seizure and new drug is introduced to Janelle. One side effects is prompt to develop kidney.stone but according to him it works better on this type of seizure which comes with jerking.
One good news is we are discharging today.
-- Post From My iPhone
Friday, May 21, 2010
Janelle's Photos - 21 Months
Saw this swim pool from E-Ling's blog, thinking that it must be very fun... Last week i saw it from toy "r" us, and i got it it immediately for Janelle.. see, how much fun they are having:
4th day in KKH
21st May 2010, Friday
4th day in KKH and we are going to 0 drugs... yes.. doctor had gave the instruction to drop all medicine from Janelle starting from this morning... Till now, she is doing well, no more 5min fits but a couple of 1 sec fits which i think is due to the drug withdrawal which we had been thru it before. that time was even worst.. throughout the nights for 2 days.
I was expecting more fits to happen yesterday night, but she didnt have it. :) miracle coming back?? but doctors thinks otherwise, according to him might be the drugs level is still with Janelle, hence we see less fits than expected. but i have a strong feeling she will be alright after this.... however, the doctor wants to get a few more seizure sample to have a clearer picture on her seizure type, we still can't discharge. guess might need to wait till sunday.
had been with janelle for 4days... enjoying her accompany.. early morning i will feed her breakfast usually is my maid does that while i wash up myself, omg... i see all her patterns.. when she see the foods she likes (example: cakes/bread) she will smile when having breakfast which really can make my day... if she dont like the food, all things will just come out of her mouth and to the floor.. no way she will take it..
when you carry her, she will be very sayang and lie her head on your shoulder.. but when you didnt notice it, she will gives you a bite... when she is good mood, she will laugh and play with the nurses, but when she is bad mood, she scream and shout at the nurses or totally ignore them.. haha... this is how naughty my girl is... but i gald she knows how to "cheat" and buy ppl's hearts.. haha.. and one big headache she has is when she heard someone cries, she will cries too... my goodness..
4th day in KKH and we are going to 0 drugs... yes.. doctor had gave the instruction to drop all medicine from Janelle starting from this morning... Till now, she is doing well, no more 5min fits but a couple of 1 sec fits which i think is due to the drug withdrawal which we had been thru it before. that time was even worst.. throughout the nights for 2 days.
I was expecting more fits to happen yesterday night, but she didnt have it. :) miracle coming back?? but doctors thinks otherwise, according to him might be the drugs level is still with Janelle, hence we see less fits than expected. but i have a strong feeling she will be alright after this.... however, the doctor wants to get a few more seizure sample to have a clearer picture on her seizure type, we still can't discharge. guess might need to wait till sunday.
had been with janelle for 4days... enjoying her accompany.. early morning i will feed her breakfast usually is my maid does that while i wash up myself, omg... i see all her patterns.. when she see the foods she likes (example: cakes/bread) she will smile when having breakfast which really can make my day... if she dont like the food, all things will just come out of her mouth and to the floor.. no way she will take it..
when you carry her, she will be very sayang and lie her head on your shoulder.. but when you didnt notice it, she will gives you a bite... when she is good mood, she will laugh and play with the nurses, but when she is bad mood, she scream and shout at the nurses or totally ignore them.. haha... this is how naughty my girl is... but i gald she knows how to "cheat" and buy ppl's hearts.. haha.. and one big headache she has is when she heard someone cries, she will cries too... my goodness..
Thursday, May 20, 2010
No more miracle?
20th may 2010, Thursday.
3rd day in kkh with half of her prescribed daily dosage, Janelle had a fit in the middle of night that lasted 5min. Does that consisted as improvement??
God, please let Janelle had the miracle. Please.
-- Post From My iPhone
3rd day in kkh with half of her prescribed daily dosage, Janelle had a fit in the middle of night that lasted 5min. Does that consisted as improvement??
God, please let Janelle had the miracle. Please.
-- Post From My iPhone
Wednesday, May 19, 2010
Under Video EEG
19 May 2010, Wednesday
We had admitted Janelle to KKH for Video EEG Monitoring. Dr wants to caught her seizure on video and EEG to see if we can pinpoints the seizure impacted parts in the brain.
We had reduced the drugs, and today is day 2 with seizure free. The plans given from the doctor is to drop her drugs each time and wait for her fits. And once she had 2 fits sample, we can discharge. I'm praying very hard that Janelle can be seizure free when we reduce the medicine further and can come to a complete stop from all drugs with no seizure. bingo!!! Please reader, please let your prayer be with Janelle. Many many thanks. Taiwan's got liuqian's miracle... and singapore will has janelle's miracle.. this is what my hub told me this morning. :) keeping both of us positive and praying for janelle.
I always had the concern on the drugs that given to child.. so small and not sure if her little tummy can take it anot... when we admitted, EEG tech wanted to gives janelle sleeping pills so that it is easy for them to do their work... draw the points, and put on the electros and bangle her head... as usually, mummy rejected and ask the maid to pat her to sleep.. thanks god, she managed to fall asleep within 15 min... and she managed to sleep thru the 3/4 of the process... :) yes, 3/4 she woke up when the tech wants to bangle her head.. had a little hard time to hold her while bangle the head... but one thing gald was not additional drugs is given to her. :P
and now we are in the ward, having our "holidays"... this is how i spent my one week AL... 80% of my time are given to janelle... i see all her silly partterns that makes me smile. my cuite little pie.
We had admitted Janelle to KKH for Video EEG Monitoring. Dr wants to caught her seizure on video and EEG to see if we can pinpoints the seizure impacted parts in the brain.
We had reduced the drugs, and today is day 2 with seizure free. The plans given from the doctor is to drop her drugs each time and wait for her fits. And once she had 2 fits sample, we can discharge. I'm praying very hard that Janelle can be seizure free when we reduce the medicine further and can come to a complete stop from all drugs with no seizure. bingo!!! Please reader, please let your prayer be with Janelle. Many many thanks. Taiwan's got liuqian's miracle... and singapore will has janelle's miracle.. this is what my hub told me this morning. :) keeping both of us positive and praying for janelle.
I always had the concern on the drugs that given to child.. so small and not sure if her little tummy can take it anot... when we admitted, EEG tech wanted to gives janelle sleeping pills so that it is easy for them to do their work... draw the points, and put on the electros and bangle her head... as usually, mummy rejected and ask the maid to pat her to sleep.. thanks god, she managed to fall asleep within 15 min... and she managed to sleep thru the 3/4 of the process... :) yes, 3/4 she woke up when the tech wants to bangle her head.. had a little hard time to hold her while bangle the head... but one thing gald was not additional drugs is given to her. :P
and now we are in the ward, having our "holidays"... this is how i spent my one week AL... 80% of my time are given to janelle... i see all her silly partterns that makes me smile. my cuite little pie.
Saturday, May 15, 2010
New Neighbor
15 May 2010, Saturday
Early in the morning, my opp neighbor moved in. this level no longer belong to us only.. need to lower our noise... :)
The mistress of family dropped me a note on forum couple weeks ago, informing me that they are moving in today.. and will be having house warming party tmr.
I walked over to say hi to the family. their girl is very smart.. just 1 yr old and she is able to walk very well... and she can speak... i heard her saying "what's that".. smart little girl.
Tuesday, May 11, 2010
More test required
10th May 2010, Monday
Was with Janelle in her class today. OT dropped by and requested to have a chat with me, he likes to understand Janelle's condition more.
He strongly recommended me to bring Janelle for her eye test. He suspect jx has some issues with her eye sight as jx doesn't seem to response to ppl/things that is far away. She will reached out for things only within her reached out area by hands.
Will request eye sight test and also hearing test next week from doctors.
-- Post From My iPhone
Was with Janelle in her class today. OT dropped by and requested to have a chat with me, he likes to understand Janelle's condition more.
He strongly recommended me to bring Janelle for her eye test. He suspect jx has some issues with her eye sight as jx doesn't seem to response to ppl/things that is far away. She will reached out for things only within her reached out area by hands.
Will request eye sight test and also hearing test next week from doctors.
-- Post From My iPhone
Sunday, May 9, 2010
Happy Mother's Day
09 May 2010, Sunday
Today is mother's day.. You had make this day special to me. without you, this will be just another day. Thank You my sweetie.. Mummy always love you.
My Mother's Day wish is you to be healthy and faster controlled the seizure and able to goes to the normal school..
Today is mother's day.. You had make this day special to me. without you, this will be just another day. Thank You my sweetie.. Mummy always love you.
My Mother's Day wish is you to be healthy and faster controlled the seizure and able to goes to the normal school..
janelle's new hair style
08 May 2010, Saturday
while mummy not around, daddy took jx for have a hair cut. here's her new hair style:
while mummy not around, daddy took jx for have a hair cut. here's her new hair style:
What a day!!
08 May 2010, Saturday
When i wake up in the morning, i found my eye was swollen.. very pain.. thinking to go and visit the doctor to get antibiotics.
In the morning, i received a call from my sis saying they are on the way to send mummy into hospital. Her feet has a wound and was badly infected. Doctor wants her to go into hospital immediately.
After settled jx and hub's lunch, i took a MRT to the hospital. At the moment i saw mummy feet, it really scare me. My sis, her bf and myself accompanied mummy in the hospital.. My mummy scared to be alone in hospital, she also scare anything will happened to the patient beside her etc.. while waiting for her turn for x-ray, she asked my sis what if doctor need to chop off her toes.. haha.. yes, that's my mummy.. and she told my sis what can be worse than hospitalize on mother's day... Thanks god, after the drip, her feet swell starts to subside. but she need to stay in overnight for monitoring.
When daddy came to hospital visit mummy in the evening, he saw my uncle. and what's a luck, my maturity's grandma also admitted to hospital cos she had a fall and has a crack on her bone. both mother and daughter are in the same hospital, same level on a same day..
dont know what's wrong with today...
When i wake up in the morning, i found my eye was swollen.. very pain.. thinking to go and visit the doctor to get antibiotics.
In the morning, i received a call from my sis saying they are on the way to send mummy into hospital. Her feet has a wound and was badly infected. Doctor wants her to go into hospital immediately.
After settled jx and hub's lunch, i took a MRT to the hospital. At the moment i saw mummy feet, it really scare me. My sis, her bf and myself accompanied mummy in the hospital.. My mummy scared to be alone in hospital, she also scare anything will happened to the patient beside her etc.. while waiting for her turn for x-ray, she asked my sis what if doctor need to chop off her toes.. haha.. yes, that's my mummy.. and she told my sis what can be worse than hospitalize on mother's day... Thanks god, after the drip, her feet swell starts to subside. but she need to stay in overnight for monitoring.
When daddy came to hospital visit mummy in the evening, he saw my uncle. and what's a luck, my maturity's grandma also admitted to hospital cos she had a fall and has a crack on her bone. both mother and daughter are in the same hospital, same level on a same day..
dont know what's wrong with today...
Saturday, May 8, 2010
My first handmade mother's day card from janelle
8th may 2010, Saturday
I received my first handmade mother's day from janelle.
The process of making the card:
-- Post From My iPhone
I received my first handmade mother's day from janelle.
The process of making the card:
-- Post From My iPhone
Friday, May 7, 2010
Updates of janelle
07 May 2010, Friday
It had been a while for me to update about Janelle's milestone..
Now she is 20 months old, and she can
- cruise. She will walk along the sofa.
- pull herself to stand when she is sitting on the floor
- having more eye contracts with us
- take things out from a box.
But her words seems to be lost.. didnt heard her saying papa and mama anymore.
now we are training her more on her fine motor skill like give and put..
Thursday, May 6, 2010
normal is far reach???
06 May 2010, Thur
Today is quite a emotional day for me..
Afternoon, we went to talk to Janelle's doctor.. here's the questions we asked:
1. is janelle fits into the condition for epilepsy surgery
Ans: we need further tests of MRI, EEG for a couple of months before we can pinpoint the impacted area and decide whether if janelle fits into the condition.
2. what is the successful rate of this surgery
Ans: we will only be able to tell more if we managed to pinpoint any impacted area
3. how many children had undergo this surgery
Ans: not many
4. if janelle undergoes the surgery, is normal we are expecting.. can janelle goes back to normal school..
Ans: for janelle, normal is far reach.. now she is old enough that she uses both side of brian for functional. hence if part of the brian removed, she will be weak in one side. and as of now, her fits are not controlled and we see obvious delayed in her developmental and if she wants to go to normal school, the chances is very slim.
after this question.. my tears already running down.. and my mind is not working anymore.. the words "normal is far reach".. "chances for normal school is very slim" are running in my mind... i just cant continue...
5. so what's the plan for janelle now?
Ans: we will need to change drugs again since the drugs are not working for her... meanwhile will arrange her to admit to hospital to undergo video EEG to determine what type of seizure she is having.
I'm lost now.. dont know what i can do.. i asked hub whether should we consider to change a doctor.. he rejected, he scare the history of NNI will repeated again...
I really lost, hence went to temple and ask god... asked for direction..
"the best is stay present"
i believe what i need now is to stay positive and continue to work hard for Janelle.. and hope should be always stays.. my goal is to put her into normal school..
加油加油加油！！！
Wednesday, May 5, 2010
Swim class
05 may 2010, Wednesday
She went to the big pool today. Tr ema says for her to learn kicking. Jx enjoyed it, she kicked, she played and she floated in the big pool:
But later in the day she had a seizure that lasted 5 min. Hope she gets used to swimming n stop having seizure after swim.
-- Post From My iPhone
She went to the big pool today. Tr ema says for her to learn kicking. Jx enjoyed it, she kicked, she played and she floated in the big pool:
But later in the day she had a seizure that lasted 5 min. Hope she gets used to swimming n stop having seizure after swim.
-- Post From My iPhone
Monday, May 3, 2010
Dinner
3 may 2010, Monday
Hub got his long service award and took us for a dinner at ivin @ upper thomson road.
Food - good
Price - resonable
But controlling Janelle is our big headache. We ended up take turns to take care of her. Started off with maid feed her dinner. when daddy done, daddy took over bringing her walking around. When mummy done, mummy took over and daddy returned to finish up his desert. Alamak... She is kind of hyper, cannot quiet down. But she is our joy too.
-- Post From My iPhone
Hub got his long service award and took us for a dinner at ivin @ upper thomson road.
Food - good
Price - resonable
But controlling Janelle is our big headache. We ended up take turns to take care of her. Started off with maid feed her dinner. when daddy done, daddy took over bringing her walking around. When mummy done, mummy took over and daddy returned to finish up his desert. Alamak... She is kind of hyper, cannot quiet down. But she is our joy too.
-- Post From My iPhone
Learning from pop
3 may 2010, Monday
Today, is a replacement holidays, no work n jx also no school, but daddy need to go to work so we returned to mummy house. At least with my nieces around to play with jx.
Early morning, pop came to me and talked for a long hours. Suddenly from pop, i found his love to his children n grandchildren is endless. He don't expect any returns from any one of us, yet he is doing his best to give us the best. Not only towards us but also to our partner, our children and in law.
I saw his worried, his 无奈, his helpless and his hope. Yet I can't help him. Feeling useless. I guess the most I can do is to take care of my family well and not to give his more worries.
We talked alot. His biz, my bro, my sis, my nieces n nephew and Janelle. We analyst about Janelle condition and he told me what's his thinking n his friends girl who dead because of fits years ago due to lack of oxygen. Pop encouaged me to go ahead with surgery when she is young before she goes to school when she will have more difficulities to cope with studies. Which I agreed but I will have to talk to hub before any commitment.
-- Post From My iPhone
Today, is a replacement holidays, no work n jx also no school, but daddy need to go to work so we returned to mummy house. At least with my nieces around to play with jx.
Early morning, pop came to me and talked for a long hours. Suddenly from pop, i found his love to his children n grandchildren is endless. He don't expect any returns from any one of us, yet he is doing his best to give us the best. Not only towards us but also to our partner, our children and in law.
I saw his worried, his 无奈, his helpless and his hope. Yet I can't help him. Feeling useless. I guess the most I can do is to take care of my family well and not to give his more worries.
We talked alot. His biz, my bro, my sis, my nieces n nephew and Janelle. We analyst about Janelle condition and he told me what's his thinking n his friends girl who dead because of fits years ago due to lack of oxygen. Pop encouaged me to go ahead with surgery when she is young before she goes to school when she will have more difficulities to cope with studies. Which I agreed but I will have to talk to hub before any commitment.
-- Post From My iPhone
Sunday, May 2, 2010
Dalian and Hong Kong Trip
02 May 2010, Sunday
Company wants me to go dalian in June, i have tried to negotiate till for a week instead of two. kogan had also agreed accommodate his travel and take leave to stay home and take care of Jx when i'm away.
Mummy had not been traveling for the past 3 years.. am very excited but on the other hand very worried of jx. had been thinking if i should go... think i need some recharge and a break from work and jx, i took up the travel. Now waiting for my boss to finalized the dates.
My plans is to transit in Hong Kong, so jio-ed my mom and sis to meet me there and i will extend my stay for another 2 days in hong kong for shopping. heee.. my sis jio-ed her bf, and my dad wants mom to bring along my eldest niece... errr... so now we have a group of 5 to hong kong.. and from a 2 days shopping trip to a family trip. but is good.. looking forward to it.
Need to go back to lockdown the dates with my boss and lead, once everything confirmed will go ahead and book for their tickets and hotels.
Saturday, May 1, 2010
List of Questions
01 May 2010, Saturday
More or less, i have decided to go for the the operation. weighting between the risk factors vs long run.. long run with the uncontrolled seizures and medicines might have more harm to her.. so i think is worth to try. I hope Janelle will be able to wean off all the medicines, stop the seizure and back on the growing path with the normal kidz.
Preparing my list of Questions to Doctor on the operation
1. What is the risk on epilepsy op?
2. What is the best case we are looking forward to?
3. What is the worst case that we need to be prepared?
4. If the operation is successful, what are we expecting?
5. Will there be any side effects?
6. Will the operation impacts her development, growth, functional, etc?
7. In KKH, how many children had went through such operational?
8. And how many successful cases? failed cases? status qua cases?
9. What's the plan like if we opn for the operation?
10. What's the cost will be?
11. Any idea if we can claim from insurance?
12. is there anything else we need to know before we commit?
13. does janelle needs to continue with the anti-seizure drugs after the operation?
14. is the operational is to be done one time only?
15. other than operational, is there other choice available?
dear readers, if you think there any questions i need to check if the doctors before commit, please comment... seeing the doctor on coming thursday. thanks.
More or less, i have decided to go for the the operation. weighting between the risk factors vs long run.. long run with the uncontrolled seizures and medicines might have more harm to her.. so i think is worth to try. I hope Janelle will be able to wean off all the medicines, stop the seizure and back on the growing path with the normal kidz.
Preparing my list of Questions to Doctor on the operation
1. What is the risk on epilepsy op?
2. What is the best case we are looking forward to?
3. What is the worst case that we need to be prepared?
4. If the operation is successful, what are we expecting?
5. Will there be any side effects?
6. Will the operation impacts her development, growth, functional, etc?
7. In KKH, how many children had went through such operational?
8. And how many successful cases? failed cases? status qua cases?
9. What's the plan like if we opn for the operation?
10. What's the cost will be?
11. Any idea if we can claim from insurance?
12. is there anything else we need to know before we commit?
13. does janelle needs to continue with the anti-seizure drugs after the operation?
14. is the operational is to be done one time only?
15. other than operational, is there other choice available?
dear readers, if you think there any questions i need to check if the doctors before commit, please comment... seeing the doctor on coming thursday. thanks.
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