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chronically_determined
What a day! 😳 I woke up to a call from Dr. R's office, asking me when I planned on coming in for my stitches. We roused ourselves and rushed in to discover that the plan was to remove all the glue holding my incision together and replace it with a row of stitches 😟 Ummmmmmm... I had 3 layers of glue after all the leaks, and I knew this wasn't going to be pleasant. Thankfully, the nerves in my skull are still numb from the surgery, so with a little lidocaine it hurt a lot less than it could have. Tugging, ripping, and pulling revealed my clean skin, which was sterilized, sutured, and then bandaged. πŸ‘ I have to come back in a week to get the stitches out, so we'll be extending the stay an extra day. Every day, someone will have to change my bandages, I'm on anti-biopics, a high dose of steroids, and of course to add insult to injury I developed a yeast infection, so I'll be tackling that as well. πŸ‘Ž It's the first day I can honestly say my head has felt like it's been through brain surgery, so I've napped and rested. Dr. R wants me on a super extreme low-sodium diet to help with the pressure in my head, so no more than 2g a day. I don't know how that's possible, but if it keeps my noggin in one piece it's totally worth it. πŸ’ͺπŸ‘‘πŸ™#chiarimalformation #zipperhead #brainsurgery #fightlikeagirl #chronicpain #chronicillness #lifeofaspoonie #spoonielife #spooniesisters #chroniccondition #hydrocephalus #posturalorthostatictachycardiasyndrome #pots #mylife #conquerchiari #chiaristrong #invisibleillness
chronicpain - zipperhead - hydrocephalus - fightlikeagirl - conquerchiari - chroniccondition - spoonielife - chiarimalformation - mylife - chronicillness - spooniesisters - posturalorthostatictachycardiasyndrome - invisibleillness - pots - brainsurgery - lifeofaspoonie - chiaristrong -
cmmaiori : Sending all of my healing vibes to you! πŸ’œπŸ’œπŸ’œπŸ’œπŸ’œ
_chiaristrong : I'm sorry to hear that I just had my third surgery for my Chiari on the 12th and got the stitches out today hope you are okay
capegirl_on_the_hill : Feel better!
chronically_determined : Thank you @cmmaiori and @capegirl_on_the_hill!!
chronically_determined : @_chiaristrong I hope you're doing better after this surgery πŸ’œπŸ’œπŸ’œ
imspikesmom : πŸ’œπŸ™πŸ’œ
fibrofairy - capegirl_on_the_hill - maymay_andthe_teg - smiling_spoonie -
instagram
bianca_graves
Because you ARE capable. πŸ˜‰
noexcuses - fitnessjourney - hydrocephalus - neuraltubedefect - determination - spinabifida - defytheodds - defyingtheodds -
bianca_graves : #spinabifida #hydrocephalus #neuraltubedefect #noexcuses #defytheodds #defyingtheodds #determination #fitnessjourney
younique_by_emily - lungessquatsandplanksohmy - awareness_for_all_ - pilgrim___ -
instagram
h.arg
My 50's Borsalino Homburg recieves a stretching at @amarchesan.se to make it slightly larger. #hydrocephalus #borsalino #hat #formal #hatter #dapper
borsalino - hat - dapper - hydrocephalus - hatter - formal -
jacob_ira : I prefer this mechanism than the Hat Jacks.
magdalena_regina : #tjockskallig #omduklipptedigkanskedenskullepassa
magdalena_regina : #hattmärkeipannan
jonathanhowells - ljm3263 - esmyv - pictonantiques -
instagram
ktpie4141
So excited! Cameron sat unassisted for 30 Seconds this morning!!!! Yay Super Cam!! #supercam #camspam #veinofgalen #hydrocephalus #hemiplegia #miraclebaby #13months #physicaltherapy
13months - miraclebaby - hemiplegia - hydrocephalus - supercam - veinofgalen - camspam - physicaltherapy -
niffer_rose : Yayyyyy!!!!!
mrskate_compton : Auntie TK is soooooooo proud!!!!
mombie_melly : Good job baby.!
hb313 : Yaaayyy! Way to go Cam!!!!
chornish : So happy to hear this!! πŸ˜ƒ go Cam go!!!!! πŸ‘
shannylkoch : Yay Cam!!!! πŸ™Œ
junebugsmomma : That's awesome!!
chels3811 : Yay!!! Go Cam!!!! Soooo exciting!!!!
kyliejonagel - rocknrollbabypl - love_kristan - chevellelove_er -
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ktpie4141
Baked yummy treats and went and looked at Christmas lights last night with family so much fun β€οΈπŸŽ…πŸŽ„#supercam #camspam #veinofgalen #hydrocephalus #hemiplegia #averyberrychristmas
veinofgalen - averyberrychristmas - hemiplegia - hydrocephalus - camspam - supercam -
shannylkoch - meag912 - angallo - ulcardinalgal -
instagram
cheshirekittkatt
Ohhh little doodlebug... Why must you demand applesauce at 1am? At least your back asleep now. Sweet nightmares my little love! 😘 #hydrocephalus #hydrowarrior #sweetprincess #nightnight #sweetnightmares
hydrowarrior - nightnight - sweetprincess - hydrocephalus - sweetnightmares -
b33zwax -
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genesisyguliannas_mommi
Wow brings back so many emotions babyboy words cant describe how i felt when the doctors diagnosed you , i will not let your illness define you because youve prooved your so much steonger than that , but i will raise awarness and support every baby/ child with #hydrocephalus #holoprosencephaly #diabetisincipidus and their families for this pain sometimes is over bearing . But sweet child of mine i know My mighty God is watching over you and i know your our angel sent here on earth ! Mommy loves you soo much heres to showing the world how strong you are and to finding a cure !
diabetisincipidus - hydrocephalus - holoprosencephaly -
deadpool_2016 : God bless him and your whole entire family @genesisyguliannas_mommi
_leenxntn : My son has hydrocephalus and holoprosencephaly too
omojica82 : God bless him and your family.....@genesisyguliannas_mommi
mama_jerbear - omojica82 - marialupe93 - _morgan_e_ -
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walaad
#StreetArt #hydrocephalus
hydrocephalus - streetart -
e.theking.e - jimmieart4u - falsomartinez - sin45nvs -
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granvillle
@jacobdemoss did an amazing job on my newest addition! Two more ribbons to go! #hydrocephalus
hydrocephalus -
marlssss_ - tara_nae12 - jbleezzzy - dillon_bryant599 -
instagram
itsdublp
I adore this little fighter, he's been through a lot and remains strong. #Love #nephew #hydrocephalus #strong #survivor #teleton #USA
teleton - love - survivor - usa - nephew - strong - hydrocephalus -
curlyloles - andrevasco -
instagram
alicexirving
THATS MY GIRL βœ”οΈ Raya has had brain surgery 4 times in her short life.. She's spent probably about half of her life in hospitals, she has #hydrocephalus , #epilepsy , #cvi , #scoliosis and #developmentdelay πŸ’œπŸ’™ doctors didn't know if she would make it, told me she would have no quality of life, pressed me to terminate my pregnancy.. But she came out fighting and has done every single day, she's fought hard for her place here on earth, she was just meant to be, just the way she is πŸ’— she's a blessing and I'm so grateful for her just the way she is πŸ’— #proudestmummy #iloveyou #mummysgirl
mummysgirl - developmentdelay - proudestmummy - epilepsy - hydrocephalus - scoliosis - iloveyou - cvi -
loren_hall - savingjaxon - ing_mommy83 - faintastic_talks_scoliosis -
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angus_haushinka
Please help raise awareness about #hydrocephalus . #neurosurgery #health #raiseawareness #awareness #hospital #YouTube
neurosurgery - health - raiseawareness - hydrocephalus - hospital - youtube - awareness -
illness_warrior - soph.malak - deecapuzza - byronwalshh -
instagram
lisa_sorenson
Always at my side. #ElisabethElva #hydrocephalus #cerebralpalsy #epilepsy
elisabethelva - epilepsy - hydrocephalus - cerebralpalsy -
malindahos : πŸ’—
malshiredah - emawee_s - masonmoutain - brendaw58 -
instagram
willowdyln
Looking through a journal I had lost and I found an entry where I felt like God had given me peace about Jolene's Craniosynostosis, with this verse written in it. It's so beautiful to look back on it (it was written 3/25) and think how much peace I have about choosing not to put her through another surgery + to see how healthy and beautiful she is now! Love the LordπŸ’• This is perfect timing as now we're tackling another fear as we found out she has developed stambismus (she's mildly going cross eyed) but I know the Lord will heal her from this and she will still be the most beautiful girl in the wold to me #blessed #craniokids #metopiccraniosynostosis #craniosynostosis #hydrocephalus #hydro #stambismus
metopiccraniosynostosis - stambismus - craniosynostosis - hydro - hydrocephalus - blessed - craniokids -
shadowofadragonfly : You have the most beautiful little girl and she will grow up happier than any other child because she has parents who love her immensely.
willowdyln : @shadowofadragonfly thank you girl!!!!! πŸ’•πŸ‘ love your heart!!! 😭
mali_tali - forevervickyandaji - beepayne - bklein06 -
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thepoplarpack
The No-Doggies-on-the-Couch Rule has been abolished because I'm sick! I should get sick more often 😏 #bulldog #bulldog #bulldoglife #bulldoggram #bulldogsofinstagram #bulldogswithdisabilities #hydrocephalus #notalldisabilitiesarevisable #dog #dogoftheday #dogsofinstagram #dogswithdisabilities #diaperlife #englishbulldog #wrinkles #snoring #snuggle #sickpuppy #squishy #squishyfacecrew
diaperlife - dogsofinstagram - bulldog - bulldoggram - dog - squishyfacecrew - squishy - snoring - dogoftheday - notalldisabilitiesarevisable - bulldoglife - dogswithdisabilities - hydrocephalus - sickpuppy - wrinkles - englishbulldog - bulldogswithdisabilities - bulldogsofinstagram - snuggle -
mustlovebulliesx2 : If you're good maybe you'll be allowed from now on. That's how I (Kujo) tricked my mommy into abolishing that rule hehe
thepoplarpack : Jack said the same thing!
bulldog1jack : @mustlovebulliesx2 NOT I just replaced them.
mustlovebulliesx2 : Hahahah share the couch! @bulldog1jack
ilovepoppyjane - muffin_and_gizmo - ms.stefanie - sklancy -
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chronically_determined
Let's try this whole recovery thing again. Steroid, pain pill, anti-nausea, stool softener, multivitamin, magnesium, and sea iodine... Can I keep the pills down today? I really don't want to end up back in the ER, and my prescription for steroids has already been doubled *sigh* Chiari won't win πŸ’ͺ I've got this πŸ‘ #chiarimalformation #zipperhead #brainsurgery #chronicpain #chronicillness #lifeofaspoonie #spoonielife #spooniesisters #chroniccondition #hydrocephalus #posturalorthostatictachycardiasyndrome #pots #mylife #conquerchiari #chiaristrong #invisibleillness
chronicpain - zipperhead - pots - conquerchiari - chroniccondition - spoonielife - chiarimalformation - mylife - chronicillness - spooniesisters - posturalorthostatictachycardiasyndrome - invisibleillness - hydrocephalus - brainsurgery - lifeofaspoonie - chiaristrong -
jillashleex : @chronically_determined You DO have this... Today WILL be a better day for you. Xoxox
syl702 : Stay strong and brave. You definitely got this
chronically_determined : Thank you @jillashleex and @syl702!! I did a lot better today. Still leaking and Dr. R had me start back on Diamox, so feeling better. I'm doing remarkably well for being 4 days post op.
homiekiyomi89 - mychronicalstory - cassie.oh.peia - notsanepoodlelady -
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misstiff.mae
Oh yeah, I forgot about that cyst.... What a journey! #timehop #chiari #hydrocephalus
chiari - timehop - hydrocephalus -
melodykoalabear - andrewwilsonny - shannonhcroom - katemc329 -
instagram
ktpie4141
Happy Sunday! Can't wait to spend the day baking and watching football with my two favorite boys! Sad this is Dadas last day of vacation:( #supercam #camspam #veinofgalen #hydrocephalus #hemiplegia #sundayfunday
sundayfunday - veinofgalen - hemiplegia - hydrocephalus - camspam - supercam -
ali4x - ashleyyy_victoria - lucky_year - ulcardinalgal -
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bang703
HYDROCEPHALUS become well with Codi Juice Hydrocephalus membaik dg minum Codi Juice. Nur Aila, 2 minggu minum, kepala menyusut 40 cm. Dari 98 cm menjadi 58 cm. Alhamdulillah, semoga lekas sembuh. #Hydrocephalus #CodiJuice #CodiJuize #Cordyceps #CordycepsBiotech #Antioxidant
cordycepsbiotech - codijuize - codijuice - antioxidant - hydrocephalus - cordyceps -
bang703 - yessyrapli - farahfahzirah -
instagram
hydrowarriorash
Only my family & my hydrocephalus family know what I go through everyday. Others run when something happens ,I don't need them right ? I don't need negative people.. I made this page to meet and find friends to talk too. 😘 πŸ˜πŸ‘#hydrocephalus #family
hydrocephalus - family -
illness_warrior : snap me? achapple2014 or kik achapple1996 😊
cristina_ibalmeida90 : This quote is so true πŸ˜‰ @hydrowarriorash
xoxo_taylorchristine - dmcsaf - kenzie_singer - steandbibiandalbi -
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jenniwo2000
#pediatric #hydrocephalus ~~these kids are all amazing!
hydrocephalus - pediatric -
lollykatkid - jmgreco - justsammyg08 - social.secrets -
instagram
ashleyrightmeow
Balloon release for my baby cousin Elena. #hydrocephalus #hydrobaby #alwaysremembered #beautifulbaby
beautifulbaby - alwaysremembered - hydrocephalus - hydrobaby -
countryboy0012 - grystgrl75 - amanda4dmb - _nimakelocin -
instagram
chronically_determined
Please stay down. It's been 24 hours since I've eaten. I'm tired of puking and being nauseous. At the ER they gave me huge amounts of anti-nausea drugs. Hopefully, my stomach comes to terms with this surgery soon. #brainsurgery #zipperhead #nausea #pukingmygutsout #sotired #chronicpain #chronicillness #lifeofaspoonie #spoonielife #spooniesisters #chroniccondition #hydrocephalus #posturalorthostatictachycardiasyndrome #pots #mylife #conquerchiari #chiaristrong #invisibleillness
pukingmygutsout - chronicpain - zipperhead - pots - conquerchiari - chroniccondition - spoonielife - mylife - sotired - chronicillness - spooniesisters - nausea - posturalorthostatictachycardiasyndrome - invisibleillness - hydrocephalus - brainsurgery - lifeofaspoonie - chiaristrong -
chronicallyfabulous - capegirl_on_the_hill - jillashleex - lupieontheloose -
instagram
futuremrsbiebs
Finally got my stuff from Hydro Angels Over America yesterday! It was flown here from Texas, which I think is pretty cool, haha! :D I'm so excited to be able to spread hydrocephalus awareness with these few items (although I've been able to do this regardless ;) ) the shirt has one of my favourite quotes on it: "you never know how strong you are until being strong is the only choice you have" πŸ‘ŒπŸ’ͺ and the bracelet is awesome as well, because I, along with millions of others who also have hydrocephalus, am a hydro warrior, and I'm proud ☺️#piccollage #potd #selfie #hydroangels #hydrocephalus #hydrowarrior #awareness #sohappy #itcame #earlychristmasgift #yay #strength #favequote #iloveit #bracelet #brainsurgery #neurosurgery #hydroangelsoveramerica #haoa #texas #belieber
hydroangelsoveramerica - itcame - hydrocephalus - selfie - earlychristmasgift - neurosurgery - potd - hydroangels - favequote - strength - yay - iloveit - belieber - bracelet - brainsurgery - hydrowarrior - texas - haoa - sohappy - piccollage - awareness -
rauhlationship : follow me
ellenntaylor : I don't have hydro, but I've had many brain surgeries due to other things - your shirt is SO amazing! I love it!
futuremrsbiebs : @ellenntaylor awh, really?! :( if you don't mind me asking, what have you had to have them for? :( thank you so much! :)
linhnguyen98 : You are so strong and beautiful!❀️
demirose213 - emilyslesueur - guarvefi - rach_watsonxo -
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glamazini
1st day home from hospital after #brainsurgery and Mr. #Flickerbug is back to his old self. Happy to see him happy & home. Love him so much. #spinabifida #hydrocephalus #blessed
flickerbug - brainsurgery - hydrocephalus - blessed - spinabifida -
sideupfelldown : cute, cute, cute!!
mrscboogie_1 : So glad the surgery went well! Praying for you guys
nouveableu : God is good, I am happy the surgery went well!β˜ΊοΈπŸ’œβ€οΈ
kymmi72 : So glad all is well.
drkylanol : Glad to see y'all back to normal!
mikkimu : Woohooooo! πŸ˜‰
caribbeanfrugal : Aww glad to see he's doing well. Awesome
kriyabotanicals : So glad to see!
economyofstyle - keyholiday - _melaniealexis - kokejin -
instagram
ashley_bbl
Merry Christmas from the two sweetest, cutest little girls!
merrychristmas - hydrocephalus - cerebralpalsy -
ashley_bbl : #cerebralpalsy #hydrocephalus #merrychristmas
kaitlynann220 - awareness_for_all_ - jessie_renee0316 - dutoit87 -
instagram
ashley_bbl
Gosh she's beautiful β™‘ #cerebralpalsy #hydrocephalus #merrychristmas
merrychristmas - hydrocephalus - cerebralpalsy -
loveistheonlytruth - krissycakes8 - awareness_for_all_ - missyfritzgraham -
instagram
bianca_graves
But first, lemme take a selfie.
neuraltubedefect - lovemyhubby - disability - married - hydrocephalus - holidays - disabled - nevertakethingsforgranted - determination - shuntlife - spinabifida - defyingtheodds - nevergiveup - christmas - ilovemyhusband -
bianca_graves : #spinabifida #hydrocephalus #disability #disabled #determination #defyingtheodds #married #ilovemyhusband #lovemyhubby #holidays #christmas
bianca_graves : #neuraltubedefect #nevergiveup #nevertakethingsforgranted
bianca_graves : #shuntlife
alexabahou : Beauty!! 😍
bianca_graves : @alexabahou 😘
lungessquatsandplanksohmy : Beautiful!
michellezesati - chronicallyliving - joemania215 - selfcatheter -
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jennasluiter422
Most days I hate epilepsy more than hydrocephalus #hydrowarrior #hydrocephalus #chiari #mysweetboy #hospitalssuck #comerchildrenshospital #eeg
chiari - hydrowarrior - hospitalssuck - eeg - hydrocephalus - comerchildrenshospital - mysweetboy -
etdrnkandbemegan : :( sweet boy!
cgruhlke : He's smiling through it! Such a sweetie.
yellowhousediary : πŸ’” poor baby
hescottfam : So sorry:(. He is precious
j_trammell - bk614 - hopeyvp - myanna20 -
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claudiaimartinez
Chiari has taken so much out of my life, but I have to say I didn't know my purpose until I was diagnosed with this brain disorder and until I underwent all of my brain surgeries. Chiari has unraveled a world I could never have dreamt of, but now can't live without. No matter how difficult my path has been, I am so thankful to have this obstacle for it has been the beginning of a new life. You can't teach empathy. Empathy comes from personal struggle and as a future physician I am beyond blessed to have experienced living in and out of the hospital because I will now be able to closely relate to my patients. #chiari #chiarimalformation #futuredoctor #brainsurgery #invisibleillness #hydrocephalus
chiari - chiarimalformation - invisibleillness - futuredoctor - hydrocephalus - brainsurgery -
nidahassan : Beautifully written and so true! πŸ’œ
lauren_proctor - mis.amores_ - megansnowwhite87 - j_trammell -
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glamazini
We out this joint! #Flickerbug was discharged, we're on our way home! Glooooooraaaaaay! #wontHedoit #wontHewill #freeflickerbug #hospitallife #brainsurgery #spinabifida #hydrocephalus #thedevilthoughthehadus #butwebettarun #beforetheychangetheirmind πŸ’ƒπŸ’ƒπŸ‘ˆ das dat 2-step praise
hospitallife - wonthedoit - beforetheychangetheirmind - wonthewill - freeflickerbug - hydrocephalus - brainsurgery - butwebettarun - spinabifida - flickerbug - thedevilthoughthehadus -
munieve : Praying for you and your family
newsjunke : Great news!!!
mznaturallife : Yayyyyyy!!! #Hewilldoit!!
journeyappstore : Hi :) we are creating something very special! What we are doing is going to help change the world. Please join us in Beta testing!
qochemist : Yay!!!
mjshoneydews : That boy is a trooper!!!
carolynjomusic : Yessssss
mfaye9656 : PWhat a Blessing!
maxinesmith4sure - carmelcoffeeeee - tonique1 - nouveableu -
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hydromomma
He really loved the fried rice #hydrobabies #hydrocephalus #preemies #hibachi #shirosofjapan
preemies - hibachi - hydrocephalus - hydrobabies - shirosofjapan -
steandbibiandalbi - deeroxxx - carmelojbueti - rayzie77 -
instagram
alicexirving
#bestfriends #mummysgirl #mummyanddaughter #iloveyou #myworld #myinspiration #hydrobaby #hydrocephalus #epilepsy #cvi #hydromom #specialneeds #specialneedsparent #selfie πŸ’œπŸ’™πŸ’—
specialneeds - hydromom - mummysgirl - hydrocephalus - selfie - epilepsy - mummyanddaughter - iloveyou - myinspiration - bestfriends - myworld - specialneedsparent - cvi - hydrobaby -
awaywithepilepsy : Beauties!
simplyskinnywraps : ❀️
eleanor_bennett - mortishiak - sparkylons - awaywithepilepsy -
instagram
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