#vpshunt

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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 🙏🏽🙏🏽

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.. 💜

#PeduliAdnan #DonasiAlkes #Vpshunt #PeduliGenerasi #GenerasiSehat
Kembali relawan menyalurkan hasil penggalangan donasi dari salah satu dermawan yg peduli dengan kondisi balita Adnan, selang yg tidak ditanggung oleh BPJS Kesehatan ini sangat dibutuhkan untuk mengganti selang yg terinfeksi, kondisi fisik balita yg masih lemah sangat membutuhkan penunjang medis yg optimal, sehingga relawan mengupayakan agar balita adnan bisa mendapatkan pengganti alat kesehatan yg dibutuhkan terlebih alat tersebut akan dipasang pada organ tubuh.
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Mewakili kedua orangtua Adnan mengucapkan terimakasih atas kemurahan hati dermawan, hanya Yang Maha Kuasa yg mampu membalasnya, serta dimohonkan doanya, mudah2an pasca operasi ada progres yg baik terhadap kesehatan balita Adnan. Amiiin
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Donasi kepedulian terhadap kebutuhan balita adnan selama menjalani perawatan masih diharapkan, salurkan kepedulian kita melalui Rek Bank Mandiri 114 00 10935685 An. peduli generasi, kepedulian kita harapan bagi para generasi penerus bangsa.
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"we care, we do, we share"

Always with me...super shuntboy...
#vpshunt #hydrocephalus

Pict by @adhamdanu

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

❤️I will always hold your hand Emma❤️Today is just another reason why I believe your the strongest lil person I know... I admire you more as each day goes by.. To My Warrior Princess Mami Loves You... Everything went well today.. surgery was a success... She's talking and acting like nothing happened!!! I'm truly blessed to have you #emma #wemma in my life 😍😍💚💚💚 #vpshunt #cp #cerebralpalsy

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

@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
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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"

Ukur-ukur rutin per bulan #cillaku 4,4 th 3,3 th post ops

BB 14,2 kg
TB 93 cm
Lika 51 cm

Lingkar kepala aman, BB naik, TB masih banyak PR

#hidrosefalus
#hidrosephalus
#hidrowarrior
#vpshunt

MOST RECENT

Still in the hospital..i believe ive been admitted for a week and a couple days. I loose track of days. My arms are all bruised theyre black and blue from multiple iv sticks..because they kept missing. I was poked 14 times in 2 hours trying to get a vein so i can get fluids and medicine. Waiting for the 3rd CSF fluid from my #vpshunt to see if bacteria is growing if so...ill be here a month to months recovering from the worst out of 8 brain surgeries i will have ever experienced. Fuck this fuck #hydrocephalus #csf #csffluid #braininfection #hospital #longbeachmemorial #longbeach #chronicallyill #ptsd #brainsurgery #hydrowarriors #420 ( i miss my weed) #pain #neurofloor #neurounit

I thought Patch was coming to greet me, but it appears I was instead getting scolded for being late to dinner. 😂 He has finally stopped giving me the cold shoulder after 4 weeks away and acting so strange around him. Usually I let Patch rub and push his head against me, but with the shunt tubing extending from my head, down my neck and in to my stomach, I'm a little cautious these days. And still paranoid about infections, so my time in the barn is short (very odd for a girl that used to AI cows, let me tell you). I won't have seen him much this summer til it's all said and done, but I keep reminding myself it will be worth it. .
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#vpshunt #pseudotumorcerebri #thislife #painthorse #horsesofinstagram #feedingtime #latefordinner #imintrouble

#iih fam I need your help thanks #vpshunt #pseudotumorcerebri

I get a lot of questions about how I got into #woodworking and #furnituremaking. The answer is my daughter Maxine. This is my big girl Maxi Grace loving on her new baby sister Poppy. Maxi is almost three but she was born super pre-mature. 1 lb 13 oz! She has #chroniclungdisease #hydrocephalus a #vpshunt in her brain, #cerebralpalsy #centralsleepapnea #dysautonomia and #corticalblindness but more importantly than all that, Maxine has a family that ADORES her and that give their lives for her everyday. A family that she is crazy about. God used Maxi and her many many needs to get me home where my wife @nikipushforplexus and our four kids needed me most. He used something crazy like YouTube and guys like @jimmydiresta @steveinmarin @iliketomakestuff @benjaminuyeda @woodwhisperer @modernbuilds and @mattcremona to give me a way to be where my family needs me most and still pay the rent. Thank you. That's why it's the Push FAMILY #woodworks and not Rick Push Woodworks. We're a team and we do everything together. #maker #artisan #woodworker but first #dad
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#specialneedsfamily #specialneedskids #medicallyfragile #medicallycomplex #corticalvisualimpairment

Living with a chronic disease means life is unpredictable - you never know how long you're good days are going to last or how sudden and quick your health can spiral down to where you end up fighting for your life. I've come to realise that there is a point after a diagnosis when you stop looking for a cure and begin to advocate being "as well as possible", for as long as possible. It stops being about delaying life until you're cured, but instead enjoying every moment for what it is and being grateful for every second of it - because, at the end of the day, you never know how long your "well" days will last for ⏳💫🌸 • Laura Lee • #twins #sisters #nevergiveup #zebrastrong #believeinyourself @rochelle_sly

Ukur-ukur rutin per bulan #cillaku 4,4 th 3,3 th post ops

BB 14,2 kg
TB 93 cm
Lika 51 cm

Lingkar kepala aman, BB naik, TB masih banyak PR

#hidrosefalus
#hidrosephalus
#hidrowarrior
#vpshunt

This time last year my precious buddy was going through multiple brain ops to tackle a nasty bastard of a brain cyst and subsequently caught bacterial meningitis from his surgery wound. In this picture he had just had an op under ketamine to put a central line into his heart to deliver his super strong antibiotics. He had an external drain from his brain which would collect brain juice that he couldn't process himself and a feeding tube. Our lives were turned upside down and I literally lived one minute to the next as everything that happened just dumbfounded me, in a strange sense my brain seemed to revert to mindful thinking as I had no idea what twist and turn would be coming next (turns out it was more surgery and divorce 🙈) Today he's VP shunt reliant and are awaiting the results of an MRI but no news on the results is bloody awesome as it means there's nothing scary on the scans. This week this total dude has started cruising (walking sideways like a crab holding furniture for you non toddler owners) and saying "Uh Oh" and can go and fetch his own shoes out of the shoe basket and bring them to me (just working on his wine decanting skills) which is more than his healthy sister was doing at #17months. Just wanted to post to give hope to others facing scary life changing times today. Can I get a #hellyeah #yearagotoday #lifechanger #myhero #hydrohero #meningitissurvivor #soblessed #kidsareawesome #hydrocephalus #hydrocephalussurvivor #arachnoidcyst #vpshunt #myheart

No place I'd rather be. Than with my boys Zion and Elijah my completion. #25weeker #necsurvivor #vpshunt #preemiestrong #nicustrong #nicubabies #fraternaltwins #brotherlylove

Link in the Bio!!
Share...Donate...Pray https://funds.gofundme.com/mobile/customize/link?url=the-fleming-twins-expenses
#gofundme #preemiestrong #nationwidechildrenshospital #riversidemethodisthospital #nicuparentsrock #nicustrong #nicurollercoaster #love #necsurvivor #vpshunt #3miracles #reborn #2ndchance #prayers #fasting #icu

Because I haven't seen him (hardly) in a month, I'm bound to over post a bit...finally allowed back in the barn, but only for a week. #thislife #vpshunt #pseudotumorcerebri #painthorse #revisionsurgery

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