Introduction + child's Medical condition

[chloe.lim]

hi everyone! Thanks for the warm welcome.
Hi Epi! Is that sebastian in your profile picture???
Chloe looks very similar too! Smaller head, full head of hair, small chin and an addictive smile!
Well chloe was diagnosed with a very general term microcephaly from the bunch of uncompassionate cold blooded commercialised doctors (sorry i got no respect for them- but since early days we found at least doctors who aren't like that and are good)

what we know about chloe from her ct & mri scans initially is she has a smooth brain without the 'curves & valleys' on the surface and her brain size is smaller than usual. Shes overall gdd and need complete assistance and care, but being a small sized girl (7kg @ 4 yr old) she resembles a 6 mth old child, only taller. We got to deal with her seizures fr 3 months old and poor chloe has already been hospitalized 3 times including once in picu. But after picu we met a good doctor at NuH whom managed to control chloe's seizures successfully with epilim (sodium volproate), clobazam (diazepam family) and phenobarbitone. other than the occassional seizure and grumpiness which we resolve it with anal diazepam, everything else is fine. (we just want good health and peace for chloe, nothing else), oh in case you all want to know the doc, shes Professor Low Poh sim of NUH Clinic A.

There isn't an accurate diagnosis for chloe as we didn't want her to go thru anymore tests. & to be frank what purpose would it serve other than getting answers, we prefer to leave it to god.

Truth is, it really is a terrible financial burden looking after our kids and the lak of support is horrendous. I can imagine that these problems are commonplace.

But no matter what problems, she still our girl and our angel and we believe she fully understands the situation and can feel our love for her, so please never give up! We should be proud to be parents of a special child, cos only special parents will get a chance to have a special child...

 

[epicurean]

hi everyone! Thanks for the warm welcome.
Hi Epi! Is that sebastian in your profile picture???
Chloe looks very similar too! Smaller head, full head of hair, small chin and an addictive smile!
Well chloe was diagnosed with a very general term microcephaly from the bunch of uncompassionate cold blooded commercialised doctors (sorry i got no respect for them- but since early days we found at least doctors who aren't like that and are good)

what we know about chloe from her ct & mri scans initially is she has a smooth brain without the 'curves & valleys' on the surface and her brain size is smaller than usual. Shes overall gdd and need complete assistance and care, but being a small sized girl (7kg @ 4 your old) she resembles a 6 month old child, only taller. We got to deal with her seizures fr 3 months old and poor chloe has already been hospitalized 3 times including once in picu. But after picu we met a good doctor at NuH whom managed to control chloe's seizures successfully with epilim (sodium volproate), clobazam (diazepam family) and phenobarbitone. other than the occassional seizure and grumpiness which we resolve it with anal diazepam, everything else is fine. (we just want good health and peace for chloe, nothing else), oh in case you all want to know the doc, shes Professor Low Poh sim of NUH Clinic A.

There isn't an accurate diagnosis for chloe as we didn't want her to go thru anymore tests. & to be frank what purpose would it serve other than getting answers, we prefer to leave it to god.

Truth is, it really is a terrible financial burden looking after our kids and the lak of support is horrendous. I can imagine that these problems are commonplace.

But no matter what problems, she still our girl and our angel and we believe she fully understands the situation and can feel our love for her, so please never give up! We should be proud to be parents of a special child, cos only special parents will get a chance to have a special child...

Hi Chloe's daddy,

Yep, that's Sebastien with his cheeky smile :001_302: He has so much hair that every cab driver feels compelled to comment about it ... he also has soft fine hair along the back of his shoulders! If you look closely at his pic, you'll see the sunken part around his temples (contributing to his smaller head)... receded as brain cells died from the trauma.

I'm with you about the good docs at PICU NUH ... the PICU team saved Seb's life during his first 72 hours. Since then, he's been seeing Dr Stacey Tay also of Clinic A. We met Prof Low before ... she covered for Dr Tay when Seb was hospitalised for suspected UTI. Seb was on phenobarb from his PICU days until he was 3 months old when his doc switched him to epilim. Phenobarb made him irritable ... he was already very cranky from his brain injury, stiff muscles ... those were the terrible days. Plus he was having breakthrough seizures which epilim has since managed to contain. He's also on diazepam and baclofen as well as zantac.

Our kids may not be able to express themselves in conventional ways but yes, I do believe they are aware of the people who love them ... they know who's a pushover for them, who they manja with :001_302:

 

[chloe.lim]

Hi Chloe's daddy,

Yep, that's Sebastien with his cheeky smile :001_302: He has so much hair that every cab driver feels compelled to comment about it ... he also has soft fine hair along the back of his shoulders! If you look closely at his pic, you'll see the sunken part around his temples (contributing to his smaller head)... receded as brain cells died from the trauma.

I'm with you about the good docs at PICU NUH ... the PICU team saved Seb's life during his first 72 hours. Since then, he's been seeing Dr Stacey Tay also of Clinic A. We met Prof Low before ... she covered for Dr Tay when Seb was hospitalised for suspected UTI. Seb was on phenobarb from his PICU days until he was 3 months old when his doc switched him to epilim. Phenobarb made him irritable ... he was already very cranky from his brain injury, stiff muscles ... those were the terrible days. Plus he was having breakthrough seizures which epilim has since managed to contain. He's also on diazepam and baclofen as well as zantac.

Our kids may not be able to express themselves in conventional ways but yes, I do believe they are aware of the people who love them ... they know who's a pushover for them, who they manja with :001_302:

Hi Hi..
Yup yup seizures are more or less contained for chloe with medication and she's the jovial cheeky girl everyday for us. However, we noticed that every once in awhile; say 2 - 3 weeks, she'll get grumpy and that'll be a precursor to having an attack. it constitutes a pattern and we usually give her anal diazepam, she'll have a solid sleep and wake up totally refreshed.. i would take it like her brain is getting exhausted and needs to be reset (hence the long sleep).. but other than that it's all good....this also happens if she has an exhausting session at OT or PT..thats why we try not to get her too excited...mild happiness is fine..

 

[epicurean]

Hi Hi..
Yup yup seizures are more or less contained for chloe with medication and she's the jovial cheeky girl everyday for us. However, we noticed that every once in awhile; say 2 - 3 weeks, she'll get grumpy and that'll be a precursor to having an attack. it constitutes a pattern and we usually give her anal diazepam, she'll have a solid sleep and wake up totally refreshed.. i would take it like her brain is getting exhausted and needs to be reset (hence the long sleep).. but other than that it's all good....this also happens if she has an exhausting session at OT or PT..thats why we try not to get her too excited...mild happiness is fine..

Hi chloe's dad,

She sounds like a gem It's really good that you guys have detected her triggers and patterns that signal the onset of a seizure and pre-empt it. For Seb, coz he has sub-clinical seizures (his last EEG still showed that), his seizure threshold is always lowered when he's having a fever or when his weight goes up and lowers the epilim level in his bloodstream. We stock-pile on epilim during each visit to NUH for med review! I've also noticed split-second moments of eye deviation which his physio confirms to be due to his brain misfiring as it tries to form connections. We too are given anal diazepam as emergency med, parked in the fridge in case he has a full-blown seizure.

Hey, when it comes to our kids with all things they have to go thru, happiness in any form or degree is welcomed and cherished! ancing_wub:

 

[chloe.lim]

Hi chloe's dad,

She sounds like a gem It's really good that you guys have detected her triggers and patterns that signal the onset of a seizure and pre-empt it. For Seb, coz he has sub-clinical seizures (his last EEG still showed that), his seizure threshold is always lowered when he's having a fever or when his weight goes up and lowers the epilim level in his bloodstream. We stock-pile on epilim during each visit to NUH for med review! I've also noticed split-second moments of eye deviation which his physio confirms to be due to his brain misfiring as it tries to form connections. We too are given anal diazepam as emergency med, parked in the fridge in case he has a full-blown seizure.

Hey, when it comes to our kids with all things they have to go thru, happiness in any form or degree is welcomed and cherished! ancing_wub:

Hi Epi & Seb,
yah it's important to observe their seizure patterns, but also because our kids are developing still albeit small in milestones; everytime chloe is able to do something new that we observe, it'll be followed by irritatable days..but it calms down after awhile.. so i will associate that with new developments in her brain..and of course the eipic (early intervention programme) at awwa has contributed alot to her improvements..of course we know that there will be a limit to her abilities, we will just have to work harder to improve her quality of life and to ensure that she'll be taken care of when we're no longer around in future.
She's just too cute and beautiful after a long day at work all i want to do is come back to her, see her at peace and her smile and all the worries in the world goes away :tlaugh:.

 

[epicurean]

Hi chloe's dad,

Thanks for sharing about chloe's seizure patterns ... I need to observe Seb for that coz there're some days when he's super irritable and I've eliminated the usual causes like GERD, gas etc.

Have you ever observed this with chloe? That after an episode, she learns better and is more focused, attentive etc? It happened once with Seb in a cab on our way to physio and during that physio session, it was as if his brain lit up and he was "on", focused.

I totally agree with you about early intervention making a big difference. Before he started his weekly physio and osteopathy sessions at 5 months, he was in such a bad, painful state with his hypertonia, migraines etc that he was super cranky and angry almost all the time except when he was sleeping. He has come a long way since those days.

Your end comments echo what my hubby always tell me We have to stay apart coz of housing issues ... whenever he sees Seb on the weekend, that's what he says and he hogs Seb like anything!

 

[xiaochuan]

Someone fwd this to me, and i would like dedicated to great mummies (epicurean/ yummymummy/ angelmum) out there whose been a great support to me...

====================
Celebrating Holland- I'm Home
By Cathy Anthony

(follow-up to the original \Welcome to Holland\ by Emily Perl Kingsley)

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. Inthose first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as
rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new
appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

 

[Angelmum]

Someone fwd this to me, and i would like dedicated to great mummies (epicurean/ yummymummy/ angelmum) out there whose been a great support to me...

====================
Celebrating Holland- I'm Home
By Cathy Anthony

Tks! Read b4, posted in my old forum. It is a destination we've never expected. Hope our pathways will grow flowers n be well lit!

 

[epicurean]

Thanks, xiaochuan It has been a turbulent journey to Holland for my family but we've grown so much and grown stronger for it.

 

[yummymummy]

Read that Holland thing from Epicurean...yes it sure helped frame my mindset towards Vera. Hope it helps you too, xiaochuan.

In case no one has told you, you are doing great so far...keep posting and talking with us!

 

[xiaochuan]

yummymummy,

thanks. I didnt think i am doing well at all.
negative feelings and thots revisit time to time, esp during weekends. When i go to the malls and see pretty little gals with parents, tears of envy well up in my eyes. The next thing i want to do is to go home.
Maybe the 1 good thing that i did, i dun cry as often as in my earlier days.
I juz arrived in this Holland .. and keep trying to think of ways to get out. I know there isnt any way..

 

[yummymummy]

Trust me, the envy will never go away. But in time you learn to live with it, that's all. Like you know it's there, but it becomes at the periphery of your mind. Vera is 2 and I still sometimes can't bear to look at kids running around in the playground.

Just remember you are not alone in this - the feelings you feel are all part of the journey. The more you fight, the more difficult the journey...the more you go with the flow, the easier it will be.

 

[chloe.lim]

Hi chloe's dad,

Thanks for sharing about chloe's seizure patterns ... I need to observe Seb for that coz there're some days when he's super irritable and I've eliminated the usual causes like GERD, gas etc.

Have you ever observed this with chloe? That after an episode, she learns better and is more focused, attentive etc? It happened once with Seb in a cab on our way to physio and during that physio session, it was as if his brain lit up and he was "on", focused.

I totally agree with you about early intervention making a big difference. Before he started his weekly physio and osteopathy sessions at 5 months, he was in such a bad, painful state with his hypertonia, migraines etc that he was super cranky and angry almost all the time except when he was sleeping. He has come a long way since those days.

Your end comments echo what my hubby always tell me We have to stay apart coz of housing issues ... whenever he sees Seb on the weekend, that's what he says and he hogs Seb like anything!

Hi Epi,

YES! That's what i am always talking about with my wife..their seizure patterns..it seems to be different sorts after awhile, i keep telling her to have faith..some part of her brain is being switched on and it's malfunctioning for awhile initially but when they snap out of it, that part of the brain becomes useful!
Let's put it this way, the brain is the least understood of all organs in the human body. It's just taking one small step at a time to restructure and reorganize itself!

God Bless

 

[epicurean]

xiaochuan,

yummymummy is right ... the more you fight against being in Holland, the harder the journey becomes. It's like what the article said ... that you're now in Holland and in Holland you must stay. This fundamental premise won't change no matter how much you want to wake up tomorrow and find all of it to be a nightmare. Fighting it makes all the harder for yourself.

That sense of envy will always linger tho it does get diluted with time. Recently, a good friend gave birth to her third child. I was happy for her but suddenly that sharp stab of envy overwhelmed me and I cried in another friend's arms. I cried that she's blessed with 3 healthy children while I only have one who's grappling with so many medical, physical and mental issues. My friend just held me and cried with me. After I was done crying that out of my system, I went home to Seb. I cuddled him, smelled him ... all I could think of is that he's mine and we'll make it thru together and I started feeling better.

 

[epicurean]

Hi Epi,

YES! That's what i am always talking about with my wife..their seizure patterns..it seems to be different sorts after awhile, i keep telling her to have faith..some part of her brain is being switched on and it's malfunctioning for awhile initially but when they snap out of it, that part of the brain becomes useful!
Let's put it this way, the brain is the least understood of all organs in the human body. It's just taking one small step at a time to restructure and reorganize itself!

God Bless

Hi Chloe's dad,

Yep, I also think that the damaged brain will misfire as it tries to form and reform connections. Hubby & I believe in the neuroplasticity of the brain ... its ability to rewire with the help of early intervention. I've seen small, small examples of that with Seb and every bit is such a thrill

Please encourage your wifey to keep faith ... our kids will continue to surprise us

 

[xiaochuan]

Hi epi/ yummymummy
U both are right. I really should learn to go with the flow.
I have an elder child who keeps asking me about bb's condition. I can only tell him mei mei is ill. She is not able to swallow, hence the tube. Each time i say this to him, my heart bleeds.
He will go on and on asking if mei mei can run and play catching when she recovers. Of late, he's even picked up the word "cerebral palsy". He doesnt know the true meaning of the word... but he knows mei mei got this "illness".
He keeps telling everyone about his play plans with mei mei when she "recovers".
Each nite, as we read to mei mei, and sing to her, he does it with the most innocent love for his sister. He kisses his princess gd nite each day.
I think all these makes it tougher for me to recover...

 

[chloe.lim]

yummymummy,

thanks. I didnt think i am doing well at all.
negative feelings and thots revisit time to time, esp during weekends. When i go to the malls and see pretty little gals with parents, tears of envy well up in my eyes. The next thing i want to do is to go home.
Maybe the 1 good thing that i did, i dont cry as often as in my earlier days.
I just arrived in this Holland .. and keep trying to think of ways to get out. I know there isnt any way..

Hi xiao chuan,
our hearts go out to u..lemme share my own personal experience after getting hit with the reality that our only child may never fulfill our basic expectations. Life was a blur..I could be driving on the road and nearly blackout from grief,the immense pain cuts my heart when I thought about it. & yet I could not cry in front of my wife, I had to be her rock. I couldn't focus on work, sitting in front of the pc at work I only wanted to find out more about these medical words that were thrown at me. But the more I read the more life had no meaning, until the day we attended church for the first time in our lives, my whole family has converted and being the cynical aetheist myself, I'm now a Christian who has left everything in his hands..
Stay strong for your child needs u to be strong

 

[jojoki]

"His ways are higher than ours.." "Be still and know that I am God"

 

[xiaochuan]

Hi xiao chuan,
our hearts go out to you..lemme share my own personal experience after getting hit with the reality that our only child may never fulfill our basic expectations. Life was a blur..I could be driving on the road and nearly blackout from grief,the immense pain cuts my heart when I thought about it. & yet I could not cry in front of my wife, I had to be her rock. I couldn't focus on work, sitting in front of the pc at work I only wanted to find out more about these medical words that were thrown at me. But the more I read the more life had no meaning, until the day we attended church for the first time in our lives, my whole family has converted and being the cynical aetheist myself, I'm now a Christian who has left everything in his hands..
Stay strong for your child needs you to be strong

Hi Chloe's dad

Thanks for sharing. I am sure all the mummies here also been thru the same agony. Everyone seems to take it well in their stead. I find myself whining and keep fighting to get out of the situation be it thru adoption/ putting her in a home etc.

I totally empathise.. and still am finding out more abt the medical terms given to me. I know it's a total waste of time for it does not change anything. She is still impaired. It's so painful that i feel like flying back to work and forget about this whole saga altogether.

I sorta decided on what to do... but there seems to be no "supporter" for my choice (i,e provide basic care and that's about it cos her case is very severe). Of cos, the decision is mine eventually. But this choice seems to be most "unapproved" as bb is still young. How would one feel to see a child with no response each day?

As i read thru the webby/ forumers' emails, the definition of "severe" cant get clearer. I am truly aware. All my little bits on hope that i survive on are but acts of self-deceit on my part

 

[epicurean]

xiaochuan,
Nobody takes being given a disabled child well in his or her stead. Those of us who started on the journey earlier have had more time and resources to come to terms with our children's conditions.

Likewise our children have had more time, help and resources to make incremental improvements. I think most of us have shared that in the early days, our children were also unresponsive and that we appreciate how far they have come by seeing how badly they started in life.

Please don't take what I'm going to say next as judging what you do or not do. It's your life, your child, so you've every right to decide what to do and not to do. Every parent has hopes for his or her child (both special and normal) and takes a parenting stance. I believe for all parents, those hopes are realised thru loving their children. Then for some parents, to actualise their hopes is thru enrichment classes, tuition, music lessons, Sunday school, sports etc. For other parents (like some of us here), we actualise our hopes thru different types of therapy (mainstream & alternative), med procedures, prayers, adaptive equipment etc. And severe doesn't necessarily mean no hope or hopeless.

If you cherish certain hopes for your gal, I hope whatever decisions you make are those you're at peace with and those that can realise those hopes for you and her *hugs*