Introduction + child's Medical condition

[Angelmum]

oh, she can pick alrite. even her teacher was amused by it. she likes strings ....sym can blow? wow! we actually cant teach rac to do anything. she doesnt really "acknowledge" anyone . so i always tell the teachers we have zero expectations for her , just run thru the activities with her can , cos she seems to enjoy school . our main aim is oni to make sure she lives happily each day, max happiness in her however long/short life. very easy student cos of lazy parents!

Looks like Rac is gd with her pincer... Sym still learning to pick up raisin with pincer grasp.

Sym blows/shoot her saliva out ... WET! At least she's now willing to let maid put a whistle n not hide/giggle non-stop or bite it ... a gd sign. Fm small expectations, now I hv roll-out some goals for maid to work on. Adopt the 'Can do, no harming setting goals'.


btw, any recommendation/comments on CCTV? What type cheap n gd to monitor maid alone with our special child?

 

[xiaochuan]

Yummymummy,

Doc also said that maybe my gal can see and hear but it's the brain that has trouble processing those visual and auditory inputs to the brain.

SIGH... each day is a torture and i try my best not to think about it. I tried to sleep my worries away but always awake in fright. Guess i have not really come to terms with my child's condition.

I await the day when she can swallow her secretion and sucking reflex comes back.

 

[rae]

when my ger was a few mths old, we know she can see (how well we dun noe, din bother to find out cos too busi with other things), but she's failed every hearing test since birth, so we were told she probably cant hear, or juz faint sounds. we din really bother abt hearing aids and such cos these are so minor compared to her other med conditions. since we tot she cant hear, so we nvr bother to lower TV volume or our voices even if she's asleep in the living room. one day, we saw her jump when a door slammed, and the docs we told was quite shocked, cos tat means she can hear. subsequently, we realised she respond so fast when we turn on her musical toy, so despite her poor results, she could hear! one good thing came out of this, she can absolutely sleep anywhere, with any kind of noise, cos we "trained" her since young! ha!:wong29:

 

[rae]

Looks like Rac is good with her pincer... Sym still learning to pick up raisin with pincer grasp.

Sym blows/shoot her saliva out ... WET! At least she's now willing to let maid put a whistle n not hide/giggle non-stop or bite it ... a good sign. Fm small expectations, now I have roll-out some goals for maid to work on. Adopt the 'Can do, no harming setting goals'.


btw, any recommendation/comments on CCTV? What type cheap n good to monitor maid alone with our special child?

aiya... but she dun do tat anymore. now she's master whole palm grip, she oni do tat. "downgrade of skills" man. sym is doing very well! u got your maid already? i dun noe wat CCTV is good, but i know there are some ads inthe papers specially for maids one. there is also some discussion in singaporemotherhood forum.

 

[epicurean]

Doc also said that maybe my gal can see and hear but it's the brain that has trouble processing those visual and auditory inputs to the brain.

Xiaochuan,

Seb's doc said the same thing about Seb's hearing & vision too. We did the hearing test which showed his ears are functioning but nerve pathways to his brain were in doubt. Didn't do the more intensive test which involves sedating him coz didn't want to subject him to that.

As for now, he can hear coz he reacts and cries differently when he hears my voice or hubby's voice. We think his hearing is a bit too sensitive coz he's a light sleeper and wakes up coz of noise! As for vision, I'm not sure how well he sees but he does like the colour yellow for some reason and he likes looking at faces

So be patient with yourself and your gal ... give yourselves time, ok?

 

[jojoki]

xiaochuan... you are rite. to be it cruelly, there are no exit points for any of us here either. so you either sink or swim. i guess for me, fortunately/unfortunately, my hubby was posted overseas when rac was 4mths, and he was very sad to leave cos he loved rac so much. when i was left alone, i felt that i had to keep rac in good shape cos i dont want to break his heart. there was once when rac was admitted into ICU in a bad shape, and by the time he booked a tix and took 26hours of flight bac, she was already stable. i was not able to sleep cos rac was crying round the clock, and had to be carried all the time, and iwas still working full time after my maternity leave. at her peak, she was seeing 16 doctors and therapists, and my diary was full of med appts. not to mention the many A&E episodes. we know so many docs in kk that we feel totally at home when we are there, unfortunately. but fortunately, we've built a great relationship with the docs so each admission is less unpleasant as we know we are in good hands. by the way, rac still doesnt sleep at nite, she slept at 5am "last nite", and i have permanent panda eyes.

my advise to you at this moment is to do a good confinement, eat well and rest well when you can, esp if your child is still in hospital. its going to be a tough battle, and you've gotta be strong to fight it. your child depends on you now, if you dont fight for her, she will be left all alone. you should have a good talk with your hubby and tell him how you feel. it is not wrong to feel upset or not love your child, it takes time, but you shouldnt do it alone.

you may feel that there is nothing to do rite now for your child cos she is not responding but there is actually a lot you can do. you can make sure she is sleeping comfortably, like using a water pillow, or turning her frequently. you can try out which diapers (the cheapest possible) will give her less rash, you can try stimulating her mouth with a pacifier, you can give her music to see if it makes her respond, you can give her lights, texture, rough surfaces to see if she will twitch, meaning she can feel something. you can cuddle her, give her lots of kisses, so that she gets stimulated. my ger used to cry and flinch when you touch her face cos of he use of NG tube and the painful tapes, that we kissed her all the time to make her less irritable. its a habit now that draws stares outside cos other ppl must think we crazy parents, so in love with our child, kiss her non-stop! but its taken her at least 1 year to be less defensive, and to stop crying when we bathe her! there are a lot of things you can do, CP is quite "common" so i'm sure you can find a lot of info. for us, nobody knows what's a chromosome disorder and we had to do so much research to find the little info, which most of the time doesnt help. she is still a helpless child no matter what and we need to do all we can to protect them.

Just soo encouraged by u!

 

[xiaochuan]

Hi epicurean
Yes. ..... time is the essence. bb still young and we dun know how bad/ good her disability is. She is too quiet to be true when i hear of other cp kids with complications. Sometimes, i think that's good in the sense her case may not be too bad? Sometimes, it's bad becos that would mean her suffering is a prolonged one.
Patience is what i am lacking.... at the very least, Seb response to sounds and faces. Mine is NOTHING at all!

 

[epicurean]

Hi epicurean
Yes. ..... time is the essence. baby still young and we dont know how bad/ good her disability is. She is too quiet to be true when i hear of other cp kids with complications. Sometimes, i think that's good in the sense her case may not be too bad? Sometimes, it's bad becos that would mean her suffering is a prolonged one.
Patience is what i am lacking.... at the very least, Seb response to sounds and faces. Mine is NOTHING at all!

Xiaochuan,
That's the thing ... nobody will know for sure how bad (or not) your baby's disability will be ... not you guys, not the doctors. But the heartening thing is that the neonatal brain is resilient and is not to be underestimated. What is also not to be underestimated is how well our disabled babies soak up our love, hugs, cuddles, kisses, talking to them, telling them stories, playing with them, massaging them ... and how much of a difference that can make to their conditions.

In the early months, Seb hardly responded to us. It was after months and months of us persisting in doing all those things and at the same time, letting go of the expectation that his achievements are a reflection of his value and seeing Seb as valuable and adorable no matter how little or how much he is able to do .... that we started to see Seb responding.

 

[rae]

Hi epicurean
Yes. ..... time is the essence. baby still young and we dont know how bad/ good her disability is. She is too quiet to be true when i hear of other cp kids with complications. Sometimes, i think that's good in the sense her case may not be too bad? Sometimes, it's bad becos that would mean her suffering is a prolonged one.
Patience is what i am lacking.... at the very least, Seb response to sounds and faces. Mine is NOTHING at all!

xiaochuan... do u realise "normal" kids can also hv problems? autistic, ADHD, behavioural problems... etc? they can also grow up to be gangsters, underachievers, unfilial. i'm sorrie if i sound harsh here, but if you are looking for encouragement from us, i think you need to work on encouraging yourself first, cos if not, nothing we say can get to you.

i read vera's blog and totally agree with a story yummymummy posted abt vera's hospital neighbour, a kid who had an accident, brain injured and passed on. i saw a similiar case once, and was also deeply saddened. the boy was 10, went to sch, cross the road, got knocked down, and became a veg with half a brain. his sis told us it is juz 2 mths from her wedding and she doesnt know if she shd still carry on as tis was a shock to her family, and they cant manage the bills. but still, they took turns to come visit him everyday, touch him, massage him, tok to him, and his sis even told him he's gotta wake up in time for her wedding cos he was so looking forward to it. so who is in a worse place? us or his parents? for us, from day 1 at birth, we know that we hv to give 200% love to our children cos they may be gone any day, hour, min. for that boy's parents, maybe the last words they said to him before he left tat day was "eh, naughty boy, you better behave yourself at sch today". and if tats the case, i'm sure they would regret their last words were not "we love you so much".

for me, something i'm thankful for was the chance to totally love my ger. if she leaves us one day, we hv no regrets tat we've not done our best to allow her to live her life to the fullest. but for the boy's parents, 10 years of caring for him, anticipating a bright future for him, all hopes are dashed. you are now considering giving your ger up for adoption, so if your child was that boy, will you give him up for adoption after he had his accident, because he is no longer normal?

i'm not so "angelic" either. patience nvr exists in my life till my ger came ard. i'm not ashamed to admit i've whacked her many times when she's full steam cranky when i'm already dropping dead tired, and someone has to take her away else i might kill her. i've also taken care of her alone w no maid's help, juggling housework, her med appts, and even hospital stays. staying over at the hospital kills me as my back prob gets so bad i cant walk properly for days. but i've also cried countless of times when waiting outside the operating theatre, not knowing if she's gonna make it, and i totally cant see anyone taking blood from her cos her veins are so difficult. i've told many docs off for not doing their jobs properly, and i'm very well known to the hospital staff for my endless requests and questioning on my ger's situation. up until last year, i still feel tat i'm not doing my best cos i'm still lazy to do a lot of things for her, but when i'm at the hospital, everyone tells me i've done a great job. during this last heart op, i finally acknowledge tat i am really not too bad a mum as rac is well-fed, growing well, happy, clean and has far exceeded her expected lifespan of two weeks. i'm willing to stay by her side in ICU even tho i had to wear 3 jackets as i'm not too good with cold, and its freezing there. i'm up on my feet with any whimper from her, and i'm all agressive and defensive if i'm not sure wat the docs want to do with her and will fight my way if i dun agree with anything. i'm thankful that i'm educated enuff to do my own research, sort my tots, and hv fruitful discussions with the docs for the best care of my child. i din quite felt as proud, till a senior and rather elderly doc came to tok to us and say we shd hv another child cos we are such good parents. at that moment, i felt that despite all the things i've not done right, i muz hv done some right things too, and hey, i'm not such a bad mum aft all. i hope one day you will feel tat of yourself too.

sorrie for the long post. i've seen too many cases of neglected children in the hospital, mostly cos their parents are low income, low educated, and they simply do not have the means or knowledge to care for their sick child, and the docs are always complaining tat there is no one to discuss abt the care for the child. but come late at nite, sometimes i see the dads, tired from a day's hard work, come quietly, and juz sit or sleep by the child. tat to me, is immense love, and i vow to learn from them.

 

[xiaochuan]

Hi Rae

u are not harsh at all.
It's really me... trying to catch up on reconciling with her condition.
Each day as i care for her, i cannot help but grief over her condition.
Each time i read all the encouraging posts, i get better but grief re-visit me again....
Like i said, each nite, i tell myself "all will be ok... so what if she has a condition?"
Each morning, the feeling of "why me? Why my child" visits me. Thank goodness, thots of whacking her hadnt come to me. i simply feel very sorry for her condition.

Yes, i am learning from u, yummymummy and epicurean. I dun know how things will be if i hadnt any support from u all.

 

[Angelmum]

you got your maid already? i dont know what CCTV is good, but i know there are some ads inthe papers specially for maids one. there is also some discussion in doesnotwork forum.

Hired a trf maid so need to find the right CCTV to monitor. Cant buy those webcam cos unable/inconvenient to surf net in office. O, there's a doesnotwork forum, name so odd .... tks, will search. Actually went Expo fair yday to compare price n know more about such matters, will go Sim Lim find out more cos super crowded yday.

 

[Angelmum]

for us, from day 1 at birth, we know that we have to give 200% love to our children cos they may be gone any day, hour, min. for that boy's parents, maybe the last words they said to him before he left that day was "eh, naughty boy, you better behave yourself at sch today". and if tats the case, i'm sure they would regret their last words were not "we love you so much".

for me, something i'm thankful for was the chance to totally love my ger. if she leaves us one day, we have no regrets that we've not done our best to allow her to live her life to the fullest. but for the boy's parents, 10 years of caring for him, anticipating a bright future for him, all hopes are dashed.

As a normal child's mum, I had to drill my son on his schoolwork, tell him to behave (dont tell lies etc) nag (spend lesser time on net) n make him dislike me. I was so delighted his PSLE result yday showed 'Express' ... quite good. I experienced the life of a normal mum n special needs mum. Frankly speaking, I rather turn back the clock to be childless cos I felt I failed to be a gd mum, especially a normal child's mum. :embarrassed:

 

[earthliving]

Hello mummies,
Children with CP have a different visual response system to ours because it is the visual pathways that are affected, not the eye itself. Children with CP most often have Cortical or Cerebral Visual Impairment, and there are tests for them. However, I am not sure if they are available here in Singapore. You may want to ask the doctors or ophthalmologists.
Just because the child isn't quite "seeing" the way we are, does not necessarily mean they are not seeing at all. Some CP children with CVI can only sense movements and hence, seem to be moving around all the time and not really fixating or focussing.
Incidentally, CVI children do tend to see yellow better!

 

[xiaochuan]

Hello mummies,
Children with CP have a different visual response system to ours because it is the visual pathways that are affected, not the eye itself. Children with CP most often have Cortical or Cerebral Visual Impairment, and there are tests for them. However, I am not sure if they are available here in Singapore. You may want to ask the doctors or ophthalmologists.
Just because the child isn't quite "seeing" the way we are, does not necessarily mean they are not seeing at all. Some CP children with CVI can only sense movements and hence, seem to be moving around all the time and not really fixating or focussing.
Incidentally, CVI children do tend to see yellow better!

earthliving,
thanks for the information. yes, i observed that bb can sense motion. would u know if there is any stimulation exercise we can do to help the child with CVI?

 

[earthliving]

earthliving,
thanks for the information. yes, i observed that baby can sense motion. would you know if there is any stimulation exercise we can do to help the child with CVI?

I think first you need to have your child properly assessed for the atypical visual behaviours for an individualised intervention plan. But some general suggestions here are:

1) Introduce objects for viewing in child's prefered colour, if there's one (usually yellow or red)

2) If movement needed, show objects that incoporate movement, eg. a dancing doll.

3) Present objects for viewing individually, and against a plain background.

4) Give simple objects eg. single colour.

5) Do not confuse child with other stimulus eg. a singing doll can be distracting.

6) Always allow time for visual response, and be observant to when child demonstrates visual awareness.

CVI, when properly diagnosed and with an individualised intervention plan, can be resolved, although not to the extent of normal vision. This may take months or years, so do be patient.

You may want to contact the vision teacher for more advice thetinyseed@hotmail.com

All the best!

 

[chloe.lim]

Hi to everybody!
It is definitely heart warming to find a support forum based in Singapore tucked away in cyberspace.
I couldn't sleep last night after chancing upon this forum and kept reading til fall asleep.

Anyway, i'm Chloe's father, Chloe is 4 this year and she's diagnosed with microcephaly since birth. She has recurrent seizures since 3 months of age up til now. When it first happened, we were in a daze with the hospital trips and medications etc. Life was in turmoil and we as parents were in permanent depression. Chloe has severe GDD but she is nevertheless our angel sent to us and we love her heaps. We bring her to Awwa for early intervention and suddenly the obscurity and loneliness went away.

We bring her out as much as possible but try not to let her get excited for she may not snap out of the excitement of being 'out & about'. I think it's the nature of our society to cast curious eyes on our children as this is how our society is made out. (perfection, materialism and judgement on face value)
We try our best to be positive and we live on the mantra of "Our Special Children are the perfect ones, without sin and full of innocence, wherelse everybody else is imperfect & ugly"

So, there is no point to dwell on whats not and what if, but dwell on what we can do to improve our children's quality of life. After all, life is but a few decades for normal lifespan human beings.

This adventure with Chloe has truly made us better human beings spiritually and we hope to share and exchange more information on the forum to gather more knowledge!

See you all around!

 

[yummymummy]

hi Chloe's dad,

nice to see a dad in this forum.

maybe you'd like to share more about what is microcephaly? educate the rest of us.

we've all been down the same dark road, so big welcome!

 

[xiaochuan]

Hi Chloe's dad

Perhaps u can share more info about your little angel?
I am hoping to learn more from u.
My gal was diagnosed as quad cp case since birth. Prgnosis is ultra bleak.
Yes, i agree on the permanent depression part. Much as i try to focus on other things, sad feelings re-visit from time to time.

 

[epicurean]

Anyway, i'm Chloe's father, Chloe is 4 this year and she's diagnosed with microcephaly since birth. She has recurrent seizures since 3 months of age up til now. When it first happened, we were in a daze with the hospital trips and medications etc. Life was in turmoil and we as parents were in permanent depression. Chloe has severe GDD but she is nevertheless our angel sent to us and we love her heaps. We bring her to Awwa for early intervention and suddenly the obscurity and loneliness went away.

Hello Chloe's dad!

Welcome My boy, Sebastien (19 months) is also diagnosed with microcephaly, among a whole host of other conditions. The list is so long that this appears somewhere at the bottom.

Btw is Chloe on medication to control her seizures?

 

[Angelmum]

Anyway, i'm Chloe's father.....We try our best to be positive and we live on the mantra of "Our Special Children are the perfect ones, without sin and full of innocence, wherelse everybody else is imperfect & ugly"

So, there is no point to dwell on whats not and what if, but dwell on what we can do to improve our children's quality of life. After all, life is but a few decades for normal lifespan human beings.

This adventure with Chloe has truly made us better human beings spiritually and we hope to share and exchange more information on the forum to gather more knowledge!

See you all around!

to the Group

Finally we have a daddy sharing his point of view. ancing_tongue:
Hope to see u often. :001_302:

AWWA seemed like a gd sch but it's too far for me. There are so few govt sch meant for multiple disabilities ... only 3.