Hydrocephalus can live a healthy normal life just like you and me

Hydrocephalus can live a normal life just like you and me.
Many people who doesnt know get so scared and they may decide to do abortion instead of giving him/her a chance to live

I have made this blog for a very long time, and tend to write about this for a very long time, but I am scared to tell the world and what effect would it have on my family
However I realise by doing that I am being such a selfish person
If what I experience can help out many others, why I dont share my story?

First of all, many said that hydrocephalus cant be cured and will always need a shunt to fix this
My kid is shunted when he is 5 days old, hydrocephalus detected on pregnancy H-1 before giving birth. The diagnose was hemorrage due to bump, so when your obgyn said that your water can protect the baby inside your tummy, its true but also not 100% true
Specially if you are in your late trimester, just be extra careful
I didnt fell or anything, but only one event in the car where there is a big hole on the road and the car was quite bumped, normal bump not that kind of scary bump, I think this is what caused this eventhough we cannot be 100% sure

We asked a neuro in Singapore Dr Phuah and he said to wait until the baby 3 months old and it will still be okay and see how it goes
However we talked a neuro surgeon and of course because he is a surgeon he suggest to operate straight away, because if we wait too long he is afraid that all the excess water in the brain will cause more damage

Back then we didnt know sinshe (accupuncture), I wish I knew this option before we undergo the surgery. If we know this maybe we can try this 3 months and see how it goes before doing the surgery
I already know 2 sinshe who both claim can cure hydrocephalus if the hydrocephalus is due to hemorrage, not an abnormal brain structure

Anyway, Normal Pressure VP Shunt is planted, and this works fine until he is 6 years old
From time to time he will get headache, and this headache will go away if he sleeps
But one day this headache stays and suddenly he got strabismus and double vision
We do an MRI and found no hydrocephalus, so they rule out any shunt problem

However, after a very long and careful study, they neuro surgeon in Indonesia decide that he got a slit ventricle syndrome, this happened because the shunt drain more water than it should. Maybe this also because the hemorrhage in his brain is gone so his brain is normal but with shunt planted, then the water drainage become more than it should
Slit ventricle syndrome also can cause headache just like hydrocephalus and also can raise brain pressure which cause the strabismus
Slit ventricle syndrome can happen, maybe because of the siphon effect, read on google what is siphon effect
So if you need to plant a shunt, please ask more about this siphon effect to your neuro and ask them how to prevent this
If you know the answer please kindly let me know to so I can know more

The neuro surgeon in Indonesia see slit ventricle syndrome, and they also see there are no more blockage
So they decide to try to block and clamp the shunt, so the water cannot drain anymore from the shunt
Hoping that the ventricle will go back to its normal size and eliminate all symptoms of the shunt problem

This is where all get worse and scary
Yes its true that his brain is not blocked anymore
Yes its true that he might not need a shunt anymore
BUT what they are failed to put into consideration is, he has live like this for 6 years, with this kind of condition where his brain is okay but he got shunted, so his brain adapt, his brain texture adapt, so when they make a sudden change such as blocking the shunt, it makes his brain pressure rocket up

This high brain pressure cause an extremely scary symptom such as losing sight and weak limb
That was the lowest point of my life, where I have no control and only God and prayer can help my kid, this is the turning point of my faith from me who has gone astray to me who prayed to God again and coming home to seek for His help

The neurosurgeon want to do the next step which is to give him Mannitol via IV to put the brain pressure down, however we just cant trust them anymore and we want to change hospital

So we change hospital, we flew from Indonesia to Singapore for a better medical service
In Singapore they scheduled an operation on the next day, they give him Diamox pill, which is also to reduce the pressure. I wish the have given this to him in Indonesia, but they suggested mannitol via IV instead
After the Diamox was taken, his condition seems better, less headache, and his eye sort of can see again. So I realise this is a temporary blindness and I was praying so hard to God to be kind to us and give him back the light to his eye, and God was so good to him and my prayer is answered.

In Singapore they decide to add a shunt, not change it but add another one in the same line.
After operation he goes to ICU for monitoring, and an ICP monitor was attached to his head, this is to see what is his brain pressure after operation

I was hoping he can see straight away after operation, but he cant, my heart broke, I was so scared beyond reasoable measure
However when we shine a light, his pupil react, even it is very very very little
The next day when we shine a light, his pupil react even better but still little
His eye can see after operation day + 3, he can see the clock on the wall, he can play and pressing the hospital bed, and I am so thankful to God because he is so good to us and let a miracle come to my kid

We went home, and now Operation day + 3 months and he is doing well
No more headache where before the added shunt he will get headache maybe once or twice every 2 weeks which can be solved by sleeping
He still got strabismus but we can see the progress that it get better everyday and his eye is better after he wakes up.
We know that healing is done during deep sleep
What I do to treat his strabismus is accupunture, essential oil for nerve healing, a lot of prayer, and balance diet

If you just undergo a shunt placement, get yourself an MRI 1 month after operation, and then maybe 3 months after operation, and after that every year or every 3 year just to make sure everything is okay.
MRI is not harmful because it doesnt use any radiation, instead they are using magnetic resonance. So if your shunt is programmable, make sure you have a neuro surgeon on spot to adjust your shunt after MRI.

My kid didnt get a follow up MRI after his first placement when he was 5 days old
I wish my neuro surgeon asked me too, but instead he said no need to do an MRI if there are no problem
Actually it is a good idea to do an MRI when you are good so you know the brain condition which you are feeling okay, this is what I read online on shunted patient in USA

MRI cost almost 5x of CT Scan, but due to the safety I prefer to choose MRI everytime over CT Scan

My kid will turn 7 this March
So far he has good grades, he has a good personality and his friends love him, he is on track on any motoric and physical development, he is the light of my life

What used to be my problem while raising him is he was a picky eater, he got nosebleed sometimes, and before his added shunt he often get headache when he is stressed, under pressure, and hearing loud noises.
However after this new shunt placement, his appetite is very good, he gained 3 kg, his head is good eventhough hearing loud noises or feeling unhappy, nosebleed still happen sometime but we checked to a doctor and she said this is because of a thin layer inside the nose.

That is my story, please help me pray for my kid so that he can be good and keep being in a good health
I really hope he can live a good life, helping others, and keep spreading hope for people who are in need

If you happen to come across a hydrocephalus or a baby's parent who may benefit from my story, please share this to them
I am willing to be contacted via whatsapp 081703106094 if you need more information about anything that I could provide

If you need any donation I am also willing to help to raise it for you, just wa me and I will see what I can do to help you

Good Review for DR. Dr. Benny Abdullah, SpKK (Dokter Spesialis Kulit)

The patient for today episode is Me. Cut it short and simple, I thought one of my lymph nodes in classified area is swollen and bleed which causes pain when the rash is rubbing other part of skin areas. I already use Gentamicine to contain this but it doesnt seem to work, the rash cannot get dry. It is wet and hurt like hell for almost 5 days now.

Turns out...it is only a mild bacterial infection which is caused by the growth of an unwanted hair. After all this infection is ended I swear to get laser on www.zap.co.id to remove all unwanted hair all over my hairy body sigh.

Well the review on Dr. Benny which name is similar to my husband :), when I am at the admin and I see a long queue I was quite freaked out because Thor is sleeping in the car with my maid being my substitute to carry him while he is asleep. I asked the admin how long should I wait because I have a baby waiting in the car for me, then the lady said I am number 16 wow...but she said that even the queue is long but the patient usually inside for a very short while because they are there only for consultation. And she was such a nice lady, she moved my number up because I give her the baby waiting in the car reason.

While waiting my husband is taking picture of his name card just in case we need to use him again next time or just for his reference.

Now my name is called, we came in to see a very nice good lovely person. He is funny and very easy to talk with. He provides many information which related to what the question asked, also provide free quick look consultation for my husband which happen to only ask for his itchy feet. He give me a prescription that can also be used by my husband.

The reason Gentamicine doesnt work is because the bacteria is just too persistent so that only rubbing on the outer skin with Gentamicine doesnt seem to work well. Also because Gentamicine texture is sticky non cream which cant be absorbed as fast as when it is in a cream substance. Garamicine is a better cream for this rash that used to eliminate bacterial infected wounds.

The interesting part is after he writes the prescription, he keeps the prescription and giving it straight away to his assistant so that assistant can make the medicine in their own farmacy. All the medicine that is given to me is on a unbranded bottle. Thats okay as long as it does its job.

 Waiting for the prescription. Doctor's practice is upstairs.

Another fun facts :) after we take the medicine, assistant will give us a paper to get a FREE spaghetti which is also owned by the doctor. He called himself Papa Ben's hahaha. He is a really funny guy. He has such a good customer service and also giving a spaghetti as an added bonus, I guess apart for being a doctor he is also such a good businessman.

The consultation price for Dr. Benny is IDR 125.000 and the antibiotics + 2 creams that he gave me is 235.000. I personally recommend this doctor :) Me and husband was saying like, "Where can we find a pediatrician with this kind of a doctor personality?"

My Great Spiritual Teachers - Arif RH, Gobind Vashdev, Ari*sand*, Dedy Susanto

Curhat hari ini:

Terlihat jelas bahwa orang yang bisa disebut guru adalah orang yang bijak dan jelas menggangap semua murid nya adalah penting. Saya pernah berguru ke 3 orang hebat, tapi hanya dua dari guru saya yang bisa lulus diberi kehormatan:)

Arif Rh adalah guru yang luar biasa, beliau suka post di fb tentang kehidupan, inspirasi, dan bahkan memberikan free pengajaran by audio. Beliau tidak pernah sibuk broadcast untuk jualan apapun, beliau hanya broadcast apa yang ada di dalam pikirannya saat itu mostly pencerahan2 yang baru. Beliau fokus mengajar dan tidak fokus kepada uang yang akan beliau dapatkan. Bahkan jika anda sudah pernah mengambil pengajarannya maka selanjutnya bisa FREE seumur hidup. Beliau pun dengan sabar dan telaten akan membalas semua comment ataupun pertanyaan2 murid2nya. Thank you for your time Pak ARIF RH PAGE

Gobind Vashdev juga seorang guru spiritual yang sangat saya hormati, beliau mengajarkan tentang kebahagiaan. Berhubung Pak Gobind juga memiliki putra yang kurang lebih seumuran sama Thor (Batita) maka posting beliau mengenai pengajaran anak2 dsb sangat menginspirasi saya dan teman2 sekitar saya yang sama2 memiliki baby. Sama dengan Pak Arif, beliau sama sekali tidak pernah broadcast tentang pelatihan2 berbayar apapun. Beliau justru dicari2 orang dan diundang sana sini. Menariknya, fee dari Pak Gobind yang dibayarkan oleh murid2nya semua disumbangkan, hanya 10 percent beliau ambil untuk kehidupan sehari2 nya. The rest is giving it back to the world. Beliau juga dengan sangat sabar menjawab pertanyaan2 muridnya baik by FB, SMS, ataupun telephone.

Nah yang terakhir ini mending saya sensor namanya, guru yang ilmunya sudah saya serap, tapi tidak ada follow up nya. Ari*sand*
Beliau menurut saya sangatlah materialistic, sembarang2 duit dulu. Pelatihanya pun juga mahalnya luar biasa dibandingkan dengan guru2 saya yang lain dan uang tersebut tidak tau deh diapakan.
Saat pelatihan saya, ada episode "pura2 membakar uang" lalu karena uang tersebut tidak jadi dibakar maka kita begitu lega dan memutuskan untuk menyumbangkan saja uang itu. Kalau saya tidak salah ingat jumlah pas nya 28.500.000 dikumpulkan dari semua peserta. Kami diberi tahu bahwa akan diinfo kelanjutannya kemana uang itu disumbangkan, tetapi sudah hampir 2 tahun tidak ada tuh infonya...yah ku tak tahu deh gimana nasib uang itu, kalo memang masuk kantong sendiri ya sudah deh karma back to you.
 Beliau juga sangat sibuk jualan di BB broadcast2 pelatihan, tapi jika saya BB nanya sesuatu di read dan tidak dibalas. Dibalas dengan broadcast an material. Ada sih teman saya yang dibalas sama dia bahkan bisa sampai becanda2, waktu pelatihan teman saya cenderung memang dekat dengan beliau bisa ngobrol2 bahkan di hypno biar bisa tidur. Yah guru pilih2 gini cape deh.
Sebenarnya saya tidak ingin ikut pelatihan Core Transformation ini karena sebelumnya suami sudah pernah ikut dan mempunyai pertanyaan ke beliau, dan sama...tidak dijawab bb nya. Setelah kira2 3x bb dalam selang waktu bbrp hari itu, maka dijawablah pertanyaan dengan satu baris aja padahal pertanyaannya panjang.
Saya sudah ga sreg tuh sama guru sombong begitu, tapi dipaksa ikut pada saat hamil pula, ya sudah lah...but thanks to him juga deh gara2 ikut pelatihan dia saya menjadi manusia yang lebih positif dari sebelumnya.

Oh, pernah juga saya ke seminar Bapak Dedy Susanto, bagus juga si bapak ini, nge jelasinnya enak dan harga seminarnya pun terjangkau tapi ya seminar massal begitu. Tapi tetap cocok dan enak kok suasanya. Beliau juga memberikan no hp dan email pribadi jika anda ada pertanyaan. Pernah saya coba email, beliau menjawab kurang dari 1x24 jam tetapi jawabnya juga ga panjang lebar seperti 2 guru saya lainnya.

Kalau Pak Arif RH dan Pak Gobind Vashdev memang top banget deh, beliau selain guru juga memperlakukan kita seperti teman dekatnya :) Mau peduli dengan masalah2 kita dan mau mendengarkan muridnya walaupun pastinya beliau2 ini sibuk sekali terbang ke seluruh indonesia untuk memberikan pengajaran2 kepada murid2nya yang baru.

That is my story for today, if you have any other spiritual teacher please let me know :) I like to seek for a good enlightment

Thordeus Gabagen when he is 16 months, Review on Dr. Gede practices in Total Life Clinic, Medicine and Consulting References

This is the link for complete information about Rubella / German Measles / Gabagen in Javanese

http://kidshealth.org/parent/infections/skin/german_measles.html#

Today is the 3rd day Thordeus caught a fever. When he wakes up this morning, there are a bunch of small red dots migrating to his face (since yesterday it was on his back and a few on his stomach). I freaked up straight away and decide to bring him to see a doctor. Actually I want to go yesterday but since it was Sunday so no doctor that I recognize will want to see a patient. I called Dr Gede and he sounds very friendly, funny, and supporting on the phone, he said to give Thordeus paracetamol first to control his fever and comes back to see him on Monday and saying that Thordeus might need a blood test because I was telling him that there are red rash in his body.

Went to Dr Gede at Total Life Clinic at 10.00 AM and got number 34 already...I was like WHATTT!!! but when I confirm to the nurse I actually are on the 3rd queue. Maybe because Dr Gede is so high tech thats why people are registering online which cause the massive queues.

The clinic itself I've been there to see Dr. Amang when I was pregnant. It was the most beautiful clinic in Surabaya with its own Hi Tech waiting room. They have an APPLE computer there where you can surf the internet, if I'm not wrong there are 3 of them, FREE Wifi of course, and they also give you cups when you pay for your administration fee so you can get FREE drinks such as MILO or Coffee there.

Now the price...this is a bit expensive in my opinion, the administration fee itself is IDR 40.000 where you have to pay everytime you see a doctor there. The doctor fee itself is IDR 200.000. My own pediatric which located in Pakuwon City near my house named Tony Chandra only cost IDR 125.000 but this time I want to try and search for other pediatric so that I have more experiences with pediatric. So far...Tony Chandra wins :) I will tell you why soon.

As I said before I was only in the 3rd queue, but the wait is more than 30 minutes, well after I came in I know why...the doctor is very talkative and sometimes he talks about something that has nothing to do with why you comes in to see him, well in my case he mentioned about how nowadays Air Conditioning doesn't even have a manual for exhaust system.

While waiting, Thordeus is very happy to play in the playground area. They seems like to change the toys every now and then, I see that they have partnership with www.toys4rent.biz. Today's toys is showed below in the picture. He surely loves to climb up and slide also to hide in the area under the slide. It has a small door and window, good activity to keep him busy while waiting. The playground area also showed below, picture taken from Google, so just imagine to put the swing in the playground area hehehe.

Okay now move on to the consultation material. First within registration, the nurse measure the weight and the head circumference. And then stepping into the doctor's room., at first I thought that the doctor is very friendly, he doesn't checking on Thor and do his normal doctor job first, instead he plays with Thor...I was like...wow niceee. And then he sees what the fuss is all about. Thor's fever is diagnosed due to what we call in Javanese: Gabagen. He caught this due to virus contamination via air so this is very hard to be avoided. The only way to avoid is not to go out to public places where there are minimum air circulation (guess this is where the air conditioner with no exhaust topic comes on and takes up quite sometimes just to explain this to us). When the red dots come all out then the fever will cease to exist. The medicine that the doctor prescribes is only to control the fever and to lighten any body pain. Gabagen patient should feel discomfort, feeling sore in their joints or parts of their body, and in a baby are expected to be restless at night.

Myths vs Facts:

- Old people said that Gabagen children should not shower and not to be taken out exposed to wind.
Doctor said...this disease has nothing to do with air or water so please just shower your child and its okay to expose them to the wind but I guess...why would you?

- Old people said that when a child is teething, child may caught a fever.
Doctor said, when a child caught a fever there are other problems thats going on, fever is unrelated to teething. But in my opinion, everytime Thor's tooth emerge...he always caught a slight fever and his poop become watery so I guess I dont know about this, which to believe?

- Old people said if Gabagen we have to make sure that all the red dots is coming out, do not let is stop otherwise it will be dangerous for the baby.
Doctor said, even if you shower or let your baby exposed to wind, the red dots will keep coming out. It is not because you shower or exposed to wind that the red dots become more or less, if it is going to come out, it will come out no matter what.

He gives Thor a prescription, I will take a picture and put in here later so maybe if your child get Gabagen you can just copy my prescription since now that I know all this, I don't think that going to doctor is necessary. I force my husband to drive me to this doctor and he said that I am just buying a peace of mind hahaha, well that is actually what counts, otherwise today all day I will be worry why my son got this reddish dots all over his body, now at this very moment at this night it has travelled to his arms and leg but his fever is stable at 37.5 - 37.9 not hitting 38 Celcius yet and that is taken temperature from his ear.

Now why I will not come back to this doctor. I do not really like the way he talks, seems like he is provoking and the way he jokes is not funny. Just like when my husband asks about medicine dose which is prescribed as puyer (drug powder). My husband asks if we give one sachet or just a half. Dr Gede answered like this, "Why would the apoteker make one sachet for several time, it is troublesome, have you never take a drug powder? Do you really drink one a tenth of a drug powder?" (bahasa sebenarnya: lho ngapain kok satu puyer diminum bbrp kali, malah ngerepoti lak an kalo porsine satu dibagi2, km ini ga pernah minum puyer ta? masa ya satu sachet dibagi 10x). I was giving my husband a wry smile. I knew that he doesnt like the doctor to react that way since he was only asking very nicely and my husband is a very soft and humble man even though he is a big daddy hehehe.

Moreover, in the back of Thordeus's head there are like a little marbles, it is a lymph node. I asked the doctor is this because of the fever or teething or any infection? He touched Thor's head thoroughly and said that if the lymph node is swelling means there are infection maybe somewhere on the top, but when he checked there are none. And he answered me more like this, "Please just dont connect one case to another, such as this lymph node and the fever, you should see the timeline which one comes first". Now with my question hasnt been answered in the way that makes me satisfied, I asked again..."so is the lymph node is okay?" He answered, "if it doesnt get bigger then its okay." And I go, "But it has gotten bigger since this red rash, is it okay?" Dr Gede answered again, "As long as the swelling comes down its okay, it has swollen so you cant expect it to dissapear just like that, overtime it will be gone." Finally I get the answer that I need to hear and I am satisfied with it, but the way he answered is just haiz...seems like he is joking because his voice is not serious, even with my husband also his way of speaking is like joking but the content of the joke itself is offensive.

Finish with the consultation, he gave us the prescription which I will post the picture later in the end of this story, we were waiting for the medicine for quite a while again. I took Thor to go to level 3 where Lineage baby and spa is, I have an appointment for this morning but when I go there they said that they cannot massage a fever baby. Well massage for another time then Thor :)

While waiting for our medicine, I dont go back to level 1, in this level they also have toys yayyy, keeping Thor busy again. So if your kids are bored in level 1 just take them to level 3, there are a small playground :) Here is the picture courtesy by Mr Google again. It is not possible for me to takes pictures while busy attending Thor here and there.

Finally my husband came with the medicine. Everything costs only IDR 29.000. With Dr Gede the consultation fee is expensive but the medicine is cheap. With Dr Tony Chandra the consultation is cheap but medicine always variate and expensive hehehe

Thats all for today :) If you have any question or more just email me, I will try to answer you within my knowledge.

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Note: Thordeus do get better in day 4, fever comes down permanently and the red rash slowly starting to fade away. Here is the prescription as I promised. Also Thor's medicine end up not being consumed at all so if any of you in Surabaya area just let me know by sms to 085931155518 and I will give it to you for FREE.

Review on Skiphop Zoo Straw Bottle REAL vs FAKE

The price of this bottle is IDR 80.000 if you buy it online, and in mothercare priced IDR 89.000 the real bottle look exactly the same as the picture, what I feel when I see the real bottle, it feels pretty small but I guess it should fit your kid's little hands perfectly (just buy the real one...fake is not good)

In my opinion the orange one is the cutest since the color is bright and also it can be used for both boys and girls. The size is small and easy to put in your diaper bag. When the lid is closed, it is non leak so feel free to just toss it in your diaper bag.

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Now move on to the look of the FAKE one...it is nowhere near as good as the real one. It actually ruins the whole concept of Skiphop Cuteness.

I bought this out of curiosity and because it is cheap too. Only IDR 39.000 bought at Arinday Atha from www.bukalapak.com
When the product arrive just today, I call the seller straight away and asked for a refund...no way Im gonna let my boy used this so sad look bottle.

The cap color is different, the hanging rope handle color is different too. For the owl the printing and bottle color is different too.

Look at how they got big in the bottom, it can't fit to a regular cup holder if you want to place this in your car. The real one is slim and the bottle is kinda shiny.

The straw hole is very small and looked like not sturdy. Yes they made out from silicon but I also do have another silicon straw bottle which look a lot better than this one.

I even bought 2 bottle because one of my friend also want a skiphop bottle, now Im gonna have to return both of them since my friend also very keen to her baby.

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Well that is my review for Skiphop Straw Bottle Real vs Fake
Hope it can help you to not buy the fake one or if you are quite satisfied with the fake one well go ahead buy it since it is cheaper anyway only half the price of the real one. But with the much much different in the outlook, people will know that your bottle is fake.

Usually people buy fake stuff because at least they look a bit like real so they can also can bring to use it outside with no shame hahaha.

Before I bought this fake one, I look for review here and there on Skiphop straw bottle real vs fake but I cant find any, so here it is :)

Restaurant Dewa Rasa @Kertajaya

Indonesian Food Lover, you will have to try this new resto.

The good news is ALL FOOD discounted 50 percent when dine in, 20 percent for take away.
Drinks are all normal price but it still very cheap for me.
Promo lasts until 22 December for all payment. Then it will be continued with BNI Syariah fod 50% discount on food ononly.

Try their nasi goreng, OMG I love it. Really2 dewanya rasa. The herb is very thick, I love it. My hubby also ordered Kari Kepala Ikan Kakap, normal price its 140rb so now ONLY 70rb. The thick soup sauce is nice but I dont eat fish head so I cant give much comment but my hubby said its nice.

Their duck is ordinary, but their meat is decent portion, the texture also okay...its not hard or anything. But not much special on the taste itself.

Tomorrow I will go there again to have lunch since they are still on promo. Would like to try their other menu. I will post photos tomorrow, since today I wasnt ready so I left my mobile phone in the car with no battery.

See ya and see more on my review tomorrow about this resto.