#vpshunt

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Tepat 3 bulan yg lalu kita sama2 brjuang di meja oprasi ya nak, krn km trlalu endut, letak sungsang dan trlilit tali pusat 4x dileher maka saran dokter Arief memang hrus sc demi kslmtan km, 17- 03- 17 pukul 09. 45 km lahir dgn selamat, bakatmu nangis kenceng bgt udh trlihat sejak km prtma lahir, stlh km kluar dr rahim, km lgsg nangis heboh kenceng dan g diem2, pun ibumu juga ikutan nangis heboh smpe sesenggukan n diketawain orang se ruangan, entahlah baru prtma itu mrskan deg2an n bahagia yg luar biasa. Km lahir sempurna, tp kata dokter anak km hrus dirwat trpisah krn km kkurangan oksigen efek dr trlilit tali pusat dileher.
Km tumbuh sehat n smkin pinter, smpai pd umur 1. 5 bln ada ssuatu yg aneh mulai trlihat. Kepala km smkin mmbesar, stiap hari naik 1cm.. Dan trnyta skecil itu km sdh mndpt cobaan yg berat nak, ada kista tumbuh dikepala anak semungil km, drainase dkepala pun trsumbat. Hancur sehancur2nha hati ibumu nak, knp hrs km, knp bkn bunda sja yg dberi cobaan sberat itu. Tepatnya tgl 22. 04. 17 pukul 10. 00 km kembali brjuang dimeja oprasi untuk pmsangan selang #vpshunt , dan yg mnyedihkan km brjuang sndri nak, bunda tdk ada dsbelahmu saat itu. Tp doa bunda tdk putus sdetikpun untuk klncaran oprasimu. Alhmdlillah km anak yg hebat, anak yg kuat, km kuat mnjlni oprasi, mlewati msa krtis yg smpe mmbuatmu henti nafas bbrpa saat, dan mampu mlewati saat2 tegang di ruang PICU. Bunda bangga sma km nak, km bnr2 anak yg kuat.
Doa n hrpan bunda smoga km tumbuh smkin kuat n smkin sehat , jd anak sholeh n sllu mmbwa kbhgiaan utk org dskeliling km. Selamt ulang bulan yg ke 3 anakku #adhyastaDzakiandraFauziano bunda n ayah menyagangimu mlbihi apapun dinunia ini.. 💜

@Regrann from @komunitas_peduli_generasi - URGENT
#PeduliRidho #DonasiAlkes #Vpshunt #SaveHydrochepalus #rumahsinggahpeduli
Kedua orangtua bayi Ridho hampir saja putus harapan saat mendengar harga selang vp shunt yg dibutuhkan anaknya, untuk menggantikan selang vp shunt sebelumnya, dokter yg menangani Ridho di RSUDAM, menyarankan agar ridho harus segera kembali menjalani operasi dan mengganti dengan vp shunt yg memiliki kualitas yg baik serta elastisitas yg tinggi, sedangkan alat yg dimaksud oleh dokter ini tidaklah ditanggung BPJS Kesehatan
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Kondisi ridho saat ini sudah sangat mengkhawatirkan karena cairan (hydro) yg berada dirongga kepalanya terus menekan, bahkan lingkar kepala ridho sudah tidak wajar bentuknya, hal ini dikarenakan selang vp shunt yg lama tersumbat dan tidak bisa mengeluarkan cairan yg berlebih pada kepala bayi ridho
.
Bayi Ridho (usia 8 bulan) adalah anak ke 2 dari pasangan bapak sugeng (kuli) dan ibu Rustiawati (ibu rumah tangga) kondisi sakit yg dialami ridho dialami sejak lahir, tidak banyak harapan yg diminta oleh kedua orangtua Ridho saat ini, hanya berharap puteranya segera mendapatkan alkes vp shunt dan dapat menjalani operasi sesegera mungkin, sambil menunggu bantuan alkes vp shunt dan tindakan operasi, ridho saat ini berada di @rumahsinggahpeduli yg dikelola komunitas peduli generasi.

Kepedulian kita adalah harapan mereka, tanpa bosan kembali para relawan mengajak orang2 yg berjiwa dermawan untuk bersama2 meringankan kondisi bayi Ridho, Donasi Peduli Ridho dapat disalurkan melalui Rekening Komunitas Peduli Generasi, Bank Mandiri 114 0010935685 An. peduli generasi
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"we care, we do, we share"

Just had surgery to replace my shunt. It was a quick and easy surgery, less than an hour. But I'm really disappointed on how they messed my hair up lol. It's all good, im glad the surgery went well. #cedarssinai #vpshunt #nf1 #neurofibromatosis #surgeryaftersurgery

Even the toughest little girls get knocked down once in a while 😞 #LittleA has a medical condition called #hydrocephalus ....when she was 7 months old she had a tube placed in her brain called a #VPshunt it runs all the way from her head to her belly....long story short, #Avalyn has had a headache since yesterday and it was getting worse 😣 to be on the safe side she needed to visit the ER to get an MRI of her head to check her VP shunt and make sure it is draining the fluid like it's suppose to....we're still waiting on the results 🙏🏽🙏🏽

⚡️Before and FUCKING after!! ⚡️ I feel feminine, edgy, pretty, & bad ass with this revolution of hair. 💜🙌🏽 @carriemycamera #aveda #vpshunt #brainsurgery #foxfiresalonfircrest #stellagothergrooveback Watch out @joemeyertattoos, mama's comin for ya! 😉😉😉

We are driving through the Shenandoah Valley. This will always be home. I'm wearing special bracelets that give me courage... @christawells "A thousand things are happening." My life word. "Dayenu." He is enough. More then enough. My life symbol, a dragonfly. Thank you for praying. #intracranialhypertension #vpshunt #zebrawarrior #ourhoperemains

DM dari @komunitas_peduli_generasi2 .
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URGENT
#PeduliRidho #DonasiAlkes #Vpshunt #SaveHydrochepalus #rumahsinggahpeduli
Kedua orangtua bayi Ridho hampir saja putus harapan saat mendengar harga selang vp shunt yg dibutuhkan anaknya, untuk menggantikan selang vp shunt sebelumnya, dokter yg menangani Ridho di RSUDAM, menyarankan agar ridho harus segera kembali menjalani operasi dan mengganti dengan vp shunt yg memiliki kualitas yg baik serta elastisitas yg tinggi, sedangkan alat yg dimaksud oleh dokter ini tidaklah ditanggung BPJS Kesehatan
.
Kondisi ridho saat ini sudah sangat mengkhawatirkan karena cairan (hydro) yg berada dirongga kepalanya terus menekan, bahkan lingkar kepala ridho sudah tidak wajar bentuknya, hal ini dikarenakan selang vp shunt yg lama tersumbat dan tidak bisa mengeluarkan cairan yg berlebih pada kepala bayi ridho
.
Bayi Ridho (usia 8 bulan) adalah anak ke 2 dari pasangan bapak sugeng (kuli) dan ibu Rustiawati (ibu rumah tangga) kondisi sakit yg dialami ridho dialami sejak lahir, tidak banyak harapan yg diminta oleh kedua orangtua Ridho saat ini, hanya berharap puteranya segera mendapatkan alkes vp shunt dan dapat menjalani operasi sesegera mungkin, sambil menunggu bantuan alkes vp shunt dan tindakan operasi, ridho saat ini berada di @rumahsinggahpeduli yg dikelola komunitas peduli generasi.

Kepedulian kita adalah harapan mereka, tanpa bosan kembali para relawan mengajak orang2 yg berjiwa dermawan untuk bersama2 meringankan kondisi bayi Ridho, Donasi Peduli Ridho dapat disalurkan melalui Rekening Komunitas Peduli Generasi, Bank Mandiri 114 0010935685 An. peduli generasi
.
"we care, we do, we share "
@seputar_lampung @pemimpin_lampung @thenewbikingregetan @pedulisesama1@palembangbaru8@komunitas_peduli_generasi2

"My new super hero name is Super Nova Corn! No. Super Unicorn! No. Super Uninovacorn! Ugh. I don't yike eever. Just super den!" ✨🐠🦄
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Neurosurg follow up today. We went over months of hospitalization history and imaging and learned that her shunt catheter is causing tenting in her ventricle. It's not an emergency but something that should not be. Simply the result of how her body has grown with her shunt. Something that may need to be addressed as no one can say how the tension and pressure is affecting her development and function. It could be mean nothing, it could be a cause for her increase in seizures, it could mean something else entirely.
More imaging and follow up in 6 months and we'll go from there. One more item on the list of things to watch and worry about and on we go. -
#novagram #savingsupernova #vpshunt #hydrocephalus #micropreemie

Well, we've been here for a while now. Waiting on the attending ophthalmologist to come and examine her and then we'll know more. #vpshunt #spinabifidamom #raisingarrows #momlife #musccharleston

MOST RECENT

My photo therapy for dealing with my mom's surgery on yesterday
#vpshunt #surgery #mom #mommasboy #hospital #neurology #neurologist #shunt

This is one of my favorite pics of my Momma. She was tough as nails, smart, funny, and strong. She was our rock and she instilled that strength in my sister and I. I can't lie though, my diagnosis of IIH and watching me go thru surgery after surgery was incredibly hard on her. I remember calling her in the middle of the night from the ICU, just to hear her voice and when I said I was sorry for waking her she said "baby it's ok, no matter how old we get we ALWAYS want our Mommas when we're sick". I carry those words in my heart every single day of my journey! #pseudotumorcerebri #iih #chronicillness #brainsurgery #survivor #lpshunt #vpshunt #spoonie #keepingitreal #scarsdontdefineyou #blessed #bestneurosurgeon #shuntrevisions #Mom #guardianangel

4 years since my little darling's 2nd shunt operation 😓 #hydrocephalus #hydrobaby #vpshunt #shunt #specialneeds #specialneedskids #neurosurgery

Welcome to our happy, hilarious, and chaotic journey :). Here is our Olivia! She was born with 10 fingers, 10 toes, and spina bifida, hydrocephalus, and clubbed feet. Disabilities can be scary or intimidating! I know, I was there myself :). Our goal is to help make disabilities less scary. Follow us and see if it is working! Learn about our journey in the link here and in the bio. Top left photo is in the NICU the day after she was born and bottom right a few days ago ❤️ #happinessis #mycupisfull #soproudofmygirl .
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#spinabifida #disabilityawareness #spinabifidastrong #spinabifidaawareness #disability #wheelchair #wheelchairlife #afos #legbraces #kidstrong #proudmama #lovinglife #beingaparentishard #hardwork #letsdothis #lifewithagirl #life #happinessishere #kiddos #sahm #physicaltherapy #hydrocephalus #vpshunt #shuntlife #nicubaby #nicumom

https://www.gofundme.com/ewgbw-saras-medical-bills

Heyyyyy, if you could help a chive sista out, I really could use the help in the recent changes in life with my health. All I ask for is a share. I appreciate any donation from you wonderful people.

The link is in the bio. #chivecharities #SingleMom #medicallyfacinating #MedicalBills #chroniceverything #iih #pseudotumorceribri #imtooyoungforthisshit #idiopathicintracranialhypertension #fibromom #fibromom #vpshunt #BrainSurgery #10percenthappier #kcco #behappy #lifeisgood #DrowningInDebt #stillalive #spoonielife #spoonieproblems

Здравствуйте друзья!
У нас опять ЧП. Мы приехали с Дуней на плановый осмотр в госпиталь и после очередного УЗИ, ей стало плохо.
Я опять увидела всё те же симптомы, которые бывают, когда перестаёт работать шунт в головочке.
Благо, мы уже, были в госпитале, я примчалась в отделение неотложки, нас быстро приняли, сделали КТ, и вот мы опять с красным браслетом, ждём операцию.
Шунт сломался и надо срочно решать проблему. По предварительным планам- постараются вернуть всё в рабочее состояние с минимальными манипуляциями, но всё же, всё будет зависит от того, что увидят на столе.
С Богом!🙏🏻
И наверное нам вырвут шатающийся зуб😳

8 months ago, today I faced my fear and underwent brain surgery to have a VP shunt placed. I still struggle but I'm thankful for the shunt because it saved my life. 💪🙌💜
#EDS #EhlersDanlosSyndrome #HypermobilityEDS #intracranialhypertension #csfleak #ChiariMalformation #ChronicIllness #ChronicPain #toughstuff #disabledbutable #disability #vpshunt #brainsurgery #Warrior #warriorstatus

Camping neng kamar......😫
#hydrocephalus #vpshunt #supervpshuntboy

"Then, I began to breathe, and live, and every moment took me to a place of gratitude and sense of peace that I'd never experienced before...for the first time, everything was inspiring..." • Laura Lee, @uvahealth recovery intensive care unit post-brain surgery, 13th April 2017 • I cannot believe this was me three months ago waking up after 5th brain/neurosurgery. It all feels so surreal, to look back and see how close to the edge of life I've trailed along many times this past year. I can choose to let it define me, confine me, refine me, outshine me, or I can just choose to accept for what it was, what it is and what it will be, continuing on this journey called 'life'. Sometimes I have to pinch myself because, for the first time, I've never felt this 'well' before. It's time for me to get what my life deserves, to start 'living' again ✨🦋🌷#zebrastrong #healthjourney #nevergiveup

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