Angelmum
Moderator
The other supplier is Rehab mart.
This is what the children r using in YP special school after swimming in the pool.
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Introduction + child's Medical condition
This is what the children r using in YP special school after swimming in the pool.
KJ mummy
Member
Hi Angelmum
Thanks for posting the pic.
Sigh..my boy has been hospitalised since last Tues due to bronchities. Dont know how and when he caught the virus except that I could think of was probably he caught a flu on one of the physiotherapy sessions at Kandang Kerbau Hospital. After that day, he was down with fever, running nose and cough.
He is much better now although he is still in the High Dependency ward for closer observations. He is already off the cepax (for air pressure) and oxygen tube to help him breath better cos he was very breathless when he was first warded in the hospital. Fever is more or less under controlled except with a few occasional spikes. For the first time, he has to befed through tube becos the docs do not want him to be bottled feed yet until his secretions and breathlessness are much better. Although the nurses have been doing suctioning every 3 hours to suck out his phlegms, he still has alot of phlegms.:embarrassed:
Daddy has been spending the nights in the hospital with him and I in the days. We feel rather guilty towards our elder daughter as we have been spending lesser time with her for the past 1 week although we have told her her little brother is not well and mummy and daddy have to go to the hospital to visit him. Really hopes she can understand.
Thanks for posting the pic.
Sigh..my boy has been hospitalised since last Tues due to bronchities. Dont know how and when he caught the virus except that I could think of was probably he caught a flu on one of the physiotherapy sessions at Kandang Kerbau Hospital. After that day, he was down with fever, running nose and cough.
He is much better now although he is still in the High Dependency ward for closer observations. He is already off the cepax (for air pressure) and oxygen tube to help him breath better cos he was very breathless when he was first warded in the hospital. Fever is more or less under controlled except with a few occasional spikes. For the first time, he has to befed through tube becos the docs do not want him to be bottled feed yet until his secretions and breathlessness are much better. Although the nurses have been doing suctioning every 3 hours to suck out his phlegms, he still has alot of phlegms.:embarrassed:
Daddy has been spending the nights in the hospital with him and I in the days. We feel rather guilty towards our elder daughter as we have been spending lesser time with her for the past 1 week although we have told her her little brother is not well and mummy and daddy have to go to the hospital to visit him. Really hopes she can understand.
epicurean
Member
Hi KJ mummy,
I'm so sorry to hear that your boy has been in the hospital battling bronchitis and having a tough time with his secretions. The thing with some viruses is that they're air-borne so it's hard to completely avoid them. The phlegm situation is frustrating and worrying ... whenever Seb falls sick, his phlegm increases exponentially and it takes time for him to clear it and for the phlegm to be regulated back into the usual amount.
Praying that your boy recovers well and that you'll be able to bring him home soon. Take good care of yourself in the meanwhile ... keeping watching at the hospital can be very exhausting on the body & on the spirits.
I'm so sorry to hear that your boy has been in the hospital battling bronchitis and having a tough time with his secretions. The thing with some viruses is that they're air-borne so it's hard to completely avoid them. The phlegm situation is frustrating and worrying ... whenever Seb falls sick, his phlegm increases exponentially and it takes time for him to clear it and for the phlegm to be regulated back into the usual amount.
Praying that your boy recovers well and that you'll be able to bring him home soon. Take good care of yourself in the meanwhile ... keeping watching at the hospital can be very exhausting on the body & on the spirits.
Hi all,
It is touching to read how strong you mommies are.:red:
Last week, my baby girl admitted into Eastshore due to high fever. Tests show Urine Tract Infection. She has loose stools, vomit, shivering and on-off fever. :embarrassed:
Went for Ultrasound scan of the kidneys and MCU for the bladder. The MCU was normal but the scan shows a cyst on right kidney. She is just born with this condition.
Discharged yesterday but will be seeing Senior Consultant A/Prof Jacobsen Anette at KK Hospital, Children Surgery Ctr, Paediatric Urology next week.
Our pediatrician suspect that the infection is caused by the buildup of urine in the cyst and the liquid cannot be expelled properly. If not treated, she may frequently have infections. There may be a need to remove the cyst on the right kidney that means part of her right kidney will be gone...omg.
This really sound very serious but nothing is conclusive yet until we see the specialist. My wife was very sad and broke down last night, I can only console her and tell her not to blame herself. In the bathroom, I broke down with the shower gushing at my face...
It pains me to think of the treatments, tests, medication she will be gg thru. Th past 4 days at the hospital is heart-wrenching enough. baby is so innocent and does not know a needle is approaching. Sometimes in her sleep, she will suddenly wake up crying, maybe it is from the nightmares of the injections. Poor thing!:embarrassed:
Hopefully we can draw something conclusive from the specialist and then be able to decide the next step. Is it gg to be as serious as the pediatrician puts it? or is it something that she can grow up with and grow out of? I am not sure.
As I lie on my bed beside my baby last night, I ask:
"Why me?"
"Why must our little girl be different from the other kids??"
"Will we be able to cope mentally and financially?"
Life will never be the same again I guess.
As I read from someone's signature if I remember correctly: "What does not break me makes me stronger"
This is my intro and my case may be peanuts compared to what mommies here undergo, thank you for hearing my rant.:tlaugh:
It is touching to read how strong you mommies are.:red:
Last week, my baby girl admitted into Eastshore due to high fever. Tests show Urine Tract Infection. She has loose stools, vomit, shivering and on-off fever. :embarrassed:
Went for Ultrasound scan of the kidneys and MCU for the bladder. The MCU was normal but the scan shows a cyst on right kidney. She is just born with this condition.
Discharged yesterday but will be seeing Senior Consultant A/Prof Jacobsen Anette at KK Hospital, Children Surgery Ctr, Paediatric Urology next week.
Our pediatrician suspect that the infection is caused by the buildup of urine in the cyst and the liquid cannot be expelled properly. If not treated, she may frequently have infections. There may be a need to remove the cyst on the right kidney that means part of her right kidney will be gone...omg.
This really sound very serious but nothing is conclusive yet until we see the specialist. My wife was very sad and broke down last night, I can only console her and tell her not to blame herself. In the bathroom, I broke down with the shower gushing at my face...
It pains me to think of the treatments, tests, medication she will be gg thru. Th past 4 days at the hospital is heart-wrenching enough. baby is so innocent and does not know a needle is approaching. Sometimes in her sleep, she will suddenly wake up crying, maybe it is from the nightmares of the injections. Poor thing!:embarrassed:
Hopefully we can draw something conclusive from the specialist and then be able to decide the next step. Is it gg to be as serious as the pediatrician puts it? or is it something that she can grow up with and grow out of? I am not sure.
As I lie on my bed beside my baby last night, I ask:
"Why me?"
"Why must our little girl be different from the other kids??"
"Will we be able to cope mentally and financially?"
Life will never be the same again I guess.
As I read from someone's signature if I remember correctly: "What does not break me makes me stronger"
This is my intro and my case may be peanuts compared to what mommies here undergo, thank you for hearing my rant.:tlaugh:
Angelmum
Moderator
u r welcome to rant ....:001_302:
the infection is caused by the buildup of urine in the cyst and the liquid cannot be expelled properly .... have u surf net to read up more? Is it going to be permanant or will go off as child older?
part of her right kidney will be gone ... need dialysis if that happens?
hey kohym... sorrie to hear abt your ger's condition. if it is of any consolation, AP jacobsen is a very senior and experienced surgeon. she may come across as quite strict, but do bear heart tat it means she will treat your case with total seriousness.
i understand how you feel abt now knowing how to console your wife and not crying in front of her. but sometimes, it does help the couple when you open your heart and tots to each other and this give each other strength. my husband also tried hard not to cry in front of me, but in the end, we realised it is thru this breaking down that gives us the strength to stand up and face the battle together. the support between the two of you is the most impt now, and you need to bear your heart to her as well if you want to achieve that.
Tyon
New Member
My hubby found this forum and asked me to have a look. I did and I was hocked. Like many of the parents here, I am a mother of a unique child.
My 3rd child Taeyon was born premature at 35 weeks. He was born in Dubai UAE as our family has been living here for the past 4.5 years.
Taeyon spend his first month in the ICU as he weighs only 1.48kg at birth. Not only does he has upper limbs abnormalities (max. 2 fingers on each arm and the left arm cannot be straighten), he also has bilateral cleft palate and gaps in his heart. He was eventually diagnosed with Cornelia de Lange Syndrome (CdLS) which is rare affecting approx. 1 in 10,000 - 50,000 live births. My heart breaks when I see him for the first time especially when he first open his swollen eyes and look at me. Our lives were never the same then.
I remember one of the worst thing was to tell our families back home about him. Seeing their grief on the webcam was really heart wrenching.
Now Taeyon is 4 months, coming to 5 months soon. He has to be tube fed as he cannot swallow. There were many questions in our minds. Why didn’t the amnio test indicate this? Why didn’t the gynae detect his deformed hands during the numerous detailed scans? So many ‘Why?’ but there were no good answers. There were few useful resources we found on the internet and we learned that CdLS happens due to a mutation of genes and it could happen to anyone.
Recently he was hospitalized due to pneumonia. He stayed 4 long weeks. Now he’s home and slowly recovering. He is still weak from the infection and requires constant oxygen supply to maintain good saturation. His blood test still shows high level of CO2. He requires frequent suctioning which we both hate so much. But there was no other choice.
Life has to go on, we have to move on forward; I still have 2 other kids to take care of. Our initial grief has become more like an acceptance and we are more or less back on track. I guess what matters most is that Taeyon is happy. I really hope he is.
My 3rd child Taeyon was born premature at 35 weeks. He was born in Dubai UAE as our family has been living here for the past 4.5 years.
Taeyon spend his first month in the ICU as he weighs only 1.48kg at birth. Not only does he has upper limbs abnormalities (max. 2 fingers on each arm and the left arm cannot be straighten), he also has bilateral cleft palate and gaps in his heart. He was eventually diagnosed with Cornelia de Lange Syndrome (CdLS) which is rare affecting approx. 1 in 10,000 - 50,000 live births. My heart breaks when I see him for the first time especially when he first open his swollen eyes and look at me. Our lives were never the same then.
I remember one of the worst thing was to tell our families back home about him. Seeing their grief on the webcam was really heart wrenching.
Now Taeyon is 4 months, coming to 5 months soon. He has to be tube fed as he cannot swallow. There were many questions in our minds. Why didn’t the amnio test indicate this? Why didn’t the gynae detect his deformed hands during the numerous detailed scans? So many ‘Why?’ but there were no good answers. There were few useful resources we found on the internet and we learned that CdLS happens due to a mutation of genes and it could happen to anyone.
Recently he was hospitalized due to pneumonia. He stayed 4 long weeks. Now he’s home and slowly recovering. He is still weak from the infection and requires constant oxygen supply to maintain good saturation. His blood test still shows high level of CO2. He requires frequent suctioning which we both hate so much. But there was no other choice.
Life has to go on, we have to move on forward; I still have 2 other kids to take care of. Our initial grief has become more like an acceptance and we are more or less back on track. I guess what matters most is that Taeyon is happy. I really hope he is.
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Angelmum
Moderator
How old are yr older kids? Schooling in govt or Intl sch?
Tyon
New Member
You are right Angelmum. Even with normal amnio test results, it does not guarantee a normal baby. The specialist who did the detailed scans for me just didnt get to see the baby's hands. If I'd knew that my baby was born with multiple abnomalities I would have terminate the pregnancy. It would be cruel and sad but at least he wouldnt have to suffer.
I've given up asking why because there is simply no point. Now the only questions I want to ask is how I can help my son. On the recent trip back to Singapore, we made so many appointments with the doctors at KK hospital. We were rushing up down left right the entire 2 days because our numerous appointments were one after the other. We dont even have time to eat! So many doctors to see because he has so many problems.
My 1st son is turning 6 years old (he's the boy riding bicycle in my avator) and he studies in an international school here in Dubai. My 2nd daughter is going to be 2 years next month. They are the sunshine of my life.
I'm glad I found this forum because I tried looking for other parents with CdLS kids in Singapore but couldnt find. At least I can relate to the special parents in this forum, whom are a source of inspiration and encouragement for me.
I've given up asking why because there is simply no point. Now the only questions I want to ask is how I can help my son. On the recent trip back to Singapore, we made so many appointments with the doctors at KK hospital. We were rushing up down left right the entire 2 days because our numerous appointments were one after the other. We dont even have time to eat! So many doctors to see because he has so many problems.
My 1st son is turning 6 years old (he's the boy riding bicycle in my avator) and he studies in an international school here in Dubai. My 2nd daughter is going to be 2 years next month. They are the sunshine of my life.
I'm glad I found this forum because I tried looking for other parents with CdLS kids in Singapore but couldnt find. At least I can relate to the special parents in this forum, whom are a source of inspiration and encouragement for me.
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Angelmum
Moderator
When my girl smiles and giggling away, I really feel happier!
R u a Sporean based overseas?
Hope this forum would act as a source of inspiration and encouragement for U and me ..... so much to learn as a special needs parent. :001_302:
Tyon
New Member
Yup! We are a Singaporean family staying in Dubai for the past 4.5 years. My hubby and I came here when my 1st son was only a year old. After that I went on to have my 2nd and 3rd child in Dubai. Quit my job when I was pregnant with my 3rd child as I wanted to spend more time with my children at this point of time. Expect myself to be busy with my 3 kids but never expect my last one to be a special needs child which means busy busy round the clock as I have to tend to each child's needs. I had a full time maid at home but even so I'm tired all the time. Not easy since my 2 years old daughter is still clingy to me; my 6 years old needs supervision on his homework (Im tutoring him on Chinese daily) and not forgetting my 3rd child who needs feeding every 3 hours round the clock as well as other things.
Do you meet up with other special needs parents as well Angelmum? Does your child goes to any special classes now?
Do you meet up with other special needs parents as well Angelmum? Does your child goes to any special classes now?
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Angelmum
Moderator
forgotten to reply this post ...... hehehe
I have met 2, both currently at Rainbow Centre, a govt special school. We chat thru forum and then met face to face.
Will u be back to Spore for home visit? Is it tough to be in Dubai? Very hot? The city u stay allows female to move around freely?
Tyon
New Member
We'll be coming back for home visit in July. Thats when my first son has his long school holidays (he's attending international school now) and my 3rd son Taeyon has his numerous appointments at KK hospital all line up. We try to have at least 2 home visits every year.
Dubai is made up of 85% expats from all over the world. Even though it is a Muslim country, it is still a very modern country. There is also the tallest tower in the world which was open recently. My first year here was tough as we are not used to the food and place here; but over the years we have made some good friends and have settled down comfortably. The weather here is scorching hot in summer months up to 45 degs, and cool in the winter months around 12 degs. Hardly experience any rain here maybe around 4 times in a year. Expats women here travel freely and many would even wear bikinis in the beach and tank tops, mini skirts in shopping malls. It is not as conservative as many people would think.
Wish I can meet other parents with special needs children as well.
Dubai is made up of 85% expats from all over the world. Even though it is a Muslim country, it is still a very modern country. There is also the tallest tower in the world which was open recently. My first year here was tough as we are not used to the food and place here; but over the years we have made some good friends and have settled down comfortably. The weather here is scorching hot in summer months up to 45 degs, and cool in the winter months around 12 degs. Hardly experience any rain here maybe around 4 times in a year. Expats women here travel freely and many would even wear bikinis in the beach and tank tops, mini skirts in shopping malls. It is not as conservative as many people would think.
Wish I can meet other parents with special needs children as well.
Angelmum
Moderator
Dubai has no gd medical? Yr home visits r company funded .... otherwise, it would be so costly just to go KKH.:err: Can imagine u will be busy running around to meet the Drs n catching up with yr relatives and friends in Jul.
Hi all wonderful and great mom out there...
I'm new.. i found this formun when i'm doing some research for my special needs girl. When i read the above thread, i really stalut all mommies for the patience and all things done for your child. Making me feeling ashame of myself as not doing as much as what you have done.
my girl now is 21mths, had diagnosed with epilepsy since she was 7mths. till now she has yet to stand on her own, walk nor talk. Her seizures has also yet to be control.. on average, she is having seizure every 2to3 days which according to doctor from KKH that seizure had been doing harm to her. We have switch 7 types of drugs but still no improvement. i'm feeling distress and helpless to her.
Nice to meet you.
I'm new.. i found this formun when i'm doing some research for my special needs girl. When i read the above thread, i really stalut all mommies for the patience and all things done for your child. Making me feeling ashame of myself as not doing as much as what you have done.
my girl now is 21mths, had diagnosed with epilepsy since she was 7mths. till now she has yet to stand on her own, walk nor talk. Her seizures has also yet to be control.. on average, she is having seizure every 2to3 days which according to doctor from KKH that seizure had been doing harm to her. We have switch 7 types of drugs but still no improvement. i'm feeling distress and helpless to her.
Nice to meet you.
Angelmum
Moderator
Nice to meet you too!
Notice yr child is 21mths old, attending any school or receiving therapies?
Is it close to infantile spasm? Epilepsy was triggered due to fever?
How long did yr yr child try on a drug before switching to another? Any obvious side effect? Ya, frequent seizure will somehow do some damage. Once I knew my girl's seizure under control, I told KKH I want to reduce dosage. I also make sure my girl gets enough rest to avoid any sudden fits.
Hi Angelmum,
Thanks for your warm welcome.
Yes, my girl is with rainbow EIPIC now and also with KKH's OT/PT/SP.
Seizure was trigger not due to fever. till now I cant gets what's trigger her, but just know that tireness is one of them. So have been keeping her life simple, as the result thrapist says she had not enough of explorersive to improve on her development.
she is had been on 3 types of AED, doctors will increase or replace one of them when he see there is not effective. on average we monitored for abt 3 to 6 months on one drugs before we change. but for increase of dosage is like doing it very often when the next seizure hits, or when the seizures frequency gets nearer.
today i seeking for a second opion from NUH... let's see what they have to says.
Thanks for your warm welcome.
Yes, my girl is with rainbow EIPIC now and also with KKH's OT/PT/SP.
Seizure was trigger not due to fever. till now I cant gets what's trigger her, but just know that tireness is one of them. So have been keeping her life simple, as the result thrapist says she had not enough of explorersive to improve on her development.
she is had been on 3 types of AED, doctors will increase or replace one of them when he see there is not effective. on average we monitored for abt 3 to 6 months on one drugs before we change. but for increase of dosage is like doing it very often when the next seizure hits, or when the seizures frequency gets nearer.
today i seeking for a second opion from NUH... let's see what they have to says.