Too blessed to be stressed. Well I have an apt Monday with my neurosurgeon again to discuss the results of the MRI . and to see about if I will have my 9th surgery. As for now I'm going to enjoy this weekend :) But I will keep you updated that's why I have made this page for. To keep my followers updated on my journey. And to spread awareness about hydrocephalus and to meet other hydro warriors. :) #hydrocephalus #strong #faith
At this very moment, I'm not her best friend. Therapy is play! #visiontherapy #switch #discoball #raffi #hydrocephalus #corticalblindness #corticalvisualimpairment
corticalblindness - raffi - switch - visiontherapy - discoball - hydrocephalus - corticalvisualimpairment -
etst - ans0213 - ajg0131 - ccsarahcc -
Car feedings and baby wearing ftw #supercam #camspam #veinofgalen #hydrocephalus #hemiplegia #babywearing #12months
kelseyauri : You two be safe out there :) the crazies are out more this time of year 👀😆
kyliejonagel - hollyanne59 - kassistoller - whyatts_mommy -
Still so very thankful! #Repost @ashleewellsjaxn with @repostapp. ・・・ Even though we lived through every moment, it's hard to believe that this is the same little being. Looking back at how profound her hydrocephalus really was is startling in retrospect. When you're on autopilot and taking action you don't see beyond the beauty. Two years ago we started to watch our eldest daughter slip as she had started to do too many times before. And then we held our breath as she underwent her first brain surgery. It saved her life, it brought her back. So grateful for every bit of cosmic alignment, medical expertise and pure love that got us through that phase. #novagram #hydrocephalus #hydrobaby
ashleygoris : She's so beautiful.
blueslostclue - simo647 - margaretkay - apritch -
Great first week of our #SpeechTour. So many cool moments with @talithaamber. This was our #RoadMap. #InspirationStation #Me2We #FreetheChildren #Speakers #Peterborough #Ontario #PersonalStory #Hydrocephalus #SpinaBifida #kids #Music #motivate #TakeAction
me2we - speakers - ontario - peterborough - takeaction - personalstory - motivate - hydrocephalus - inspirationstation - roadmap - speechtour - kids - music - spinabifida - freethechildren -
fultoncheryl - mattydrumsz - bnicholls90 - _cx0x -
Even though we lived through every moment, it's hard to believe that this is the same little being. Looking back at how profound her hydrocephalus really was is startling in retrospect. When you're on autopilot and taking action you don't see beyond the beauty. Two years ago we started to watch our eldest daughter slip as she had started to do too many times before. And then we held our breath as she underwent her first brain surgery. It saved her life, it brought her back. So grateful for every bit of cosmic alignment, medical expertise and pure love that got us through that phase. #novagram #hydrocephalus #hydrobaby
my2seeds : WOW! Amazing Nova
sj811 : ❤️❤️❤️❤️
ee91 : #supernovagirl 💞
jenbrown76 : I hear you mama! "On autopilot" is a perfect way to put it and I know exactly what you are talking about. It's hard to look back most of the time but so so grateful to be where we are today. Much love and hugs xxoo
everything_in_place : Much love to you and your beautiful family ❤️❤️❤️❤️
rachel_cashen : Oh, what a previous little girl! You can see the fight in her eyes in the pic on the left. Love following her story and so glad for how well she is doing ❤️
iamliya : A true miracle girl! So beautiful!
maitegaru : Nova is amazing, strong and beautiful!! 👏😘
darlingdarley - hbana83 - anotherstacie - ebarker08 -
❤️Thanks Mama @zahin_amirun for tiny cute baju #babyaldrian #babyaldriankuat #hydrobaby #hydrocephalus
afzaludin : Get well soon baby aldrian...... 😉
zhallin : Grow big n strong n healthy sweet lil baby! ❤️
lucky_year : Aldrian is looking well, he's absolutely gorgeous 💙💜💛
winiewiandri : Baby al... I miss u.. Sehat ya nak... Be strong sayang
nizakay : @afzaludin @zhallin thanks 🙏
nizakay : @lucky_year thanks dear 😘, but Aldrian still loss his weight, latest is 2.3kg, like weight his was born day. 😔
nizakay : Thanks for #pray4aldrian @winiewiandri 😘
lucky_year : Daniel also struggled with his weight, he is on a high energy milk now and a supplement I add to his food, it's better, but still a long way to go x
shamsiahwahab - wani.suhaili - ynamorataabe__abe - yangsafikah_muhammadnaim -
suarezbia - markieskie - cheeeenang - tateendaos -
#arthritis #asd #costachondritis #chronicillness #chronicpain #depressed #depression #gastritis #gastricreflux #hydrowarrior #hydrocephalus #invisibleillness #mentalillness #ra #migraine #headache #hernia #pain
chronicpain - pain - gastritis - arthritis - mentalillness - asd - hernia - chronicillness - depression - invisibleillness - depressed - hydrocephalus - migraine - hydrowarrior - ra - gastricreflux - costachondritis - headache -
i_am_breakable : loving it! ⛺
migraine_support - recoveringkawaiiprincess - princess25198 - acheron29 -
My 2 girls 💕 I'm grateful for both of them ❤️ #thanksgiving #Maggie #Mille #loveyouprincessforeverandever #preemie #hydrocephalus #hydrowarrior #VPShunt #westie
maggie - westie - hydrocephalus - thanksgiving - hydrowarrior - loveyouprincessforeverandever - vpshunt - preemie - mille -
onedayatatimenatalie - simriis - stinemoooor - foufoubrands -
demirose213 : That's me now
erinasmommy : I won library reading contests all summer every summer
lowreeezy : Me TOO!!!!
amy_booher : @demirose213 @erinasmommy @lowreeezy 💗📕📗📘📙
justynamroz : @amy_booher I was searching for hydrocephalus and found you. I just found out about this couple days ago. I see a neurologist in a couple weeks. I'm so scared. But you look full of life and it gives me such hope. Thanks for sharing your story.
amy_booher : @justynamroz never lose hope... It's a tough battle with lots of ups and downs, but just try to be as proactive as you can be. You can live a beautiful and full life with #hydrocephalus -- I'm so glad you reached out to me. Hang tight. Look through all my hydro related posts, I've done a few with FAQ's. #relentlesspursuit 💙⚓️
ashley_biggs_ - maddiel37 - irisespino - brandtlassen -
It's so crazy to think that last year I was in the hospital for thanksgiving. I'm so so thankful for my family and friends that have stuck by my side throughout the whole thing. I used to hate my sickness because I didn't feel like I was "normal" and I lost a lot of "friends" throughout it. Thankfully I learned who my true friends are by being in the hospital and I've learned to fully accept my sickness. I'm especially thankful to my mom because she has been there through everything. Also thankful to the amazing team at UCSF that's been working with me. Okay this is long #HappyThanksgiving #Hydrocephalus #Thankful #Blessed
santirecords - brie.an.uh - danyellycrayola - ohheyitsgaby_ -
Chopped off by IG. #lookhowhesgrown #thanksgiving over the last 3 years. At #7weeks, at #214months and at #2yearsold. No longer a #baby, now a little #boy. So #amazed at how much #progress Jordan has made. The first #thanksgiving he had his first #seizure and we ended up in the hospital, so celebrating a third year with him is remarkable. He keeps on fighting! #hydrowarrior #hydrostrong #hydrocephalus #nevergiveup #relentlesspursuit #myworld #lovemyson
not214months - 7weeks - nevergiveup - seizure - hydrostrong - myworld - baby - 214months - boy - 14months - 2yearsold - hydrocephalus - thanksgiving - relentlesspursuit - hydrowarrior - progress - lovemyson - amazed - lookhowhesgrown -
dmcsaf : #not214months !!! #14months grrrr
absthetics_org : Follow? :)
everynewday1983 - sweete82 - deans_world - ccurry27 -
Today I'm not thankful for turkey, football, stuffing, or Black Friday. I'm thankful for LIFE. You never know just how bad things could be, or how much worse they could be, unless you go through it. Thank God for another day and for amazing family and friends. Hug the ones you love a little bit tighter from now on; you never know when they could be taken from you. #thankfulforlife #thanksgiving #Hydrocephalus #FindtheCure
nickyd914 - pedrophysique - dsmitsu02 - josh_pagan -
HAPPY THANKSGIVING!!! In the spirit of today, please give to a great cause & help out the children. Please check out my KickStarter for "A Friend Like Me" a doll company that I created for children who have an illness, a disability, low self-esteem or children who just feel different. All of your donations will go towards the manufacturing of the dolls and their accessories. Please know that no amount is too small, I'm grateful for any amount! FOR THOSE THAT HAVE ALREADY DONATED, THANK YOU SO MUCH FROM THE BOTTOM OF MY HEART!!!!! 😘 PLEASE SHARE THIS LINK WITH OTHERS!!!!! The link is https://www.kickstarter.com/projects/afriendlikeme/a-friend-like-metm #Cancer #Autism #Leukemia #BreastCancer #Lupus #Military #Dwarfism #HIV #Hydrocephalus #Stuttering #CleftLip #SickleCell #MaleDolls #FemaleDolls #AFriendLikeMe #AnyIllness #AnyDisability #NaturalHair #NaturalBeauty #DifferentIsBeautiful
femaledolls - hiv - leukemia - breastcancer - naturalbeauty - naturalhair - stuttering - autism - anyillness - lupus - cleftlip - cancer - sicklecell - hydrocephalus - afriendlikeme - anydisability - military - differentisbeautiful - dwarfism - maledolls -
hearthechange - angelt1227 - cancerinspirational - audiemedley -
Another #tbt 💗 I didn't get to meet Raya until she was already 6 hours old, her daddy went to see her in special care while I was in theatre recovery and took this photo of her, it's the first photo I ever saw of her 😭😍💗 #preemie #premature #prembaby #hydrobaby #hydrocephalus #nicu #specialneeds #specialcare #cpap #fighter #brave #mummysgirl
specialneeds - brave - fighter - specialcare - mummysgirl - cpap - hydrocephalus - tbt - premature - nicu - preemie - hydrobaby - prembaby -
mschris83 - its.tayloromg - caryl_ann_p_11 - lol4epilepsy -
Perfect way to start turkey day 💙 I know technically this is Cameron's second thanksgiving but it's the first one that he has spent out of the hospital so I am extra thankful that I am able to hold and snuggle him all day 🙏 HAPPY THANKSGIVING 💛#supercam #camspam #veinofgalen #hydrocephalus #hemiplegia #happythanksgiving #thankful
obsessivemomma : Happiest thanksgiving! Love you all 😘
obsessivemomma : Btw. Bald head looks good on him!!
mrskate_compton : So glad we got to come & hug & kiss that cutie today! 😘😘
ktpie4141 : Aw me too best surprise 😘😘 @mrskate_compton
ktpie4141 : Happy thanksgiving we love you too!! Need to see you soon!! @obsessivemomma
gmbs2410 : Have they ever attempted to do an ETV procedure on him?
sjv721 : He's so cute!!
ktpie4141 : Thank you😘😘 @sjv721
chevellelove_er - angelt1227 - nahiomy85 - gmbs2410 -
norwegianpagan - muzicloverforever - radiogeekzack - leahgordon -
I look like shit and I feel like shit...#shunt #hydrocephalus #vattenskalle #headache #surgery #suffer #pain #disabled #swedishgirl #sweden #spinabifida #sbteen #home #directioner #onedirection #harrystyles #louistomlinson #liampayne #niallhoran #zaynmalik #nofilter #nomakeup
liampayne - zaynmalik - pain - disabled - louistomlinson - niallhoran - home - surgery - suffer - nomakeup - onedirection - shunt - vattenskalle - swedishgirl - hydrocephalus - sweden - harrystyles - directioner - spinabifida - sbteen - nofilter - headache -
gmbs2410 : Have you ever tried the ETV procedure to get the shunt removed and be shunt less?
1d_elli_1d : @gmbs2410 nope I haven't. This is my first shunt surgery since birth
finn_eh - selfcatheter - cajsa95 - anniefofana -
misha_chadwick : How's he going @krystal_dsdkzk?
krystal_dsdkzk : Yeah getting there. We just got moved up to the ward. We get day release on the weekend yay! MRI on mon then we go from there @misha_chadwick ♥
mrsccrichton : Xox xo
jodie3181 : LooKs so much better xxx pity about the ugly head in the photo lol
shopcoupons : 😃
dant172 : Big hugs to you xx
misha_chadwick : Glad to hear he's getting better
becrankine : So glad to hear he is doing better xx
mellarocio19 - boje_1990 - fright86 - peta_lee -
I love my girl! She is the center of my whole world! #specialneedspuppy #hydrocephalus #blinddog #gsdlife #germanshepherd #gsd
emilyhannahmay - tlscollins - lincolnslittlegirl - the1wren6 -
ha_walk_charlotte - nicstu1212 - nikirobisonbrows - mickschulte -
lachancla_voladora : She's so pretty. 😘 lots of love to her and many hugs to you. :)
bremarz - lil_lexy_27 - lovely_rosie2006 - inessa45 -
It's officially been 2 years since I met Justin. I can't even believe it 😫😭I honestly don't know what my life would be like if Justin were not in it. He literally means so much to me; more than anyone will ever understand. You haters can say whatever you want about him, but it's not going to change the fact that he was there for me when no one else was. I have very few friends, so him being on Twitter and interacting with us as much as he used to was amazing, and I've made so many Twitter/Instagram friends because of that. I just, he's been the reason for my happiness throughout all 16 surgeries I've had since 2010, and that's more than I can say about anybody else. justinbieber #lovehim #makeawish #lifesaver #angel #mybaby #montreal #bellcentre #november26 #hydrocephalus #hydrowarrior #brainsurgery #belieber
lifesaver - angel - belieber - hydrowarrior - hydrocephalus - brainsurgery - november26 - mybaby - bellcentre - makeawish - lovehim - montreal -
brtyas : yeah @VinesBeLike
hannahfinch15 - emilyslesueur - maceymcdaniel - rach_watsonxo -
| God sees A L L !!! You think my daughter needs you B?!?! You think we care if you do for her or not ???! 😂 God is watching over my baby Korian & his angels are encamped !!! I wish you the best of luck & pray for you soul !! #deadbeat #iprayforyoursoul #heartless #typical #father #notatall #bestofluck #maygodcontinuetoblessus
bestofluck - notatall - oxygen - apraxia - deadbeat - epilepsy - father - hydrocephalus - heartless - breathingmachine - sedated - dypraxia - iprayforyoursoul - spinalbifida - coma - maygodcontinuetoblessus - pleasewakeup - cerebralpalsy - typical -
keey_leauxsteez : @mizbprettyred
iron_addict33 : SMH @keey_leauxsteez London will always be blessed without him
thatssoravii : He better be glad I'm saved 😤 can't do nothing but pray for an evil soul!
mizbprettyred : That's is Fuckling ridiculous he is a sad excuse for a person let alone a man!!!! London does not now and will ever need anything from him she has been doing just fine he can keep that negative hateful bullshit over there!!! God does not play about his children especially the innocent he will get his she has love all around her. Just got off my kness praying for her and with that Being said Fuck that sorry ASS BITCH!!!!! @keey_leauxsteez
keey_leauxsteez : #epilepsy #hydrocephalus #cerebralpalsy #spinalbifida #pleasewakeup #dypraxia #apraxia #sedated #coma #oxygen #breathingmachine
beautiful_lyricist : Wow! Karma gon get his ass...
reka_da_boss_robinson - youuloveee.e - alliaszonli - maureenmg8 -
reidmcduff - kersulyte - monicamariepld - denaselig -
My nerves are a wreck today. It's head ultrasound day for Easton. Normally I feel totally confident - today however I feel super anxious and uneasy. Is this a mommy sign kicking it? At his last appointment his head has grown a lot. His doctor said by now she would like to see his head size start curving on the chart how ever it's just going up. But from 3 months to 5 1/2 months the jump is rather large. Easton also hasn't been acting like himself. He sleep almost all day long, hardly eats, he very unsettled just not my easy happy going baby. Maybe this is just him growing and changing?! I don't know. But we pushed his surgery back 5 time so I'm hoping lucky number 6 is on our side this time. #hydrocephalus 💙
cleaneating_sassy : ✨Wow that you everyone for all the thoughts, prayers and kind words!✨ 🙌💙✌️😊 it means a lot I know whatever will be it will be OK... We've been through ALOT worst with the twins this is just another thing!
cleaneating_sassy : @waltersgiiiirl thanks Hun 😊💕
cleaneating_sassy : @cbmama4 I've heard that from a few mom that the stress anticipation the not knowing if a shunt is needed or not blah blah blah... It worst then the actually shunt experience... That once the shunt was done it was like a breath of fresh air
cleaneating_sassy : @dmcsaf thank you... Our little guy has been totally off he barely ate last night went to be at 7:30 and just woke up at 10:30 after I woke him up! That's just not like him and I barely can get him to eat... He just wants to sleep but we will see what the ultrasound shows I'm just hoping maybe this behavior is just a growing spurt which he also desperately needs lol 😊
cbmama4 : Yes, I totally get it. This sucks!!!! That's all there is to say about it, it sucks that hydrocephalus exsists, it sucks it's happening to your baby, it's sucks there's no cure. It all sucks.
lhabert : Good luck sweetheart 😘
junebugsmomma : Thinking about you. We wanted to do an ETV but were advised against because of the failure rate at one month, Savannah had surgery for a shunt and although it can make me nervous at times, we are (knock on wood), still with the original and I know that's pretty amazing. Hard to go through all this and hydrocephalus in general.
honeyface310 : 🙏🙏🙏
dcardenas319 - katherinebielefield - kris_peters528 - hunter_girl.2003 -
fukyouayyitsjeno - marley_mota - mandi__mommie - inessa45 -
Charlie Naya 6lb 9oz Length 17.33 11/25/2014 @10:41 am #spinabifida #hydrocephalus #clubbedlegs #purebeauty
dupleks12g : @demybrooke Congratulations!!!
eddiemiha08 : Congrats Brooke 😊
janalynnie - extradisgruntledterrestrial - eddiemiha08 - inessa45 -
Stressssss!!😭😭😭😭. Preparing for thanksgiving and my sons birthday party tomorrow, and Christmas shopping, breaking up, and moving!!! Yeah...that'll do it 😭
blemishes - stress - depo - acne - hydrocephalus - pregnancyloss - hydrocephalusawareness - iwantclearskin - angelbaby - hormonalacne - pregnancylossawareness - acnescars -
onedayatatimenatalie : #stress #acne #acnescars #blemishes #iwantclearskin #hormonalacne #depo #pregnancyloss #pregnancylossawareness #angelbaby #hydrocephalus #hydrocephalusawareness
teighla_kapp : Use baking soda.. make a paste with water and apply, keep it on the spots until it drys.. rinse off and information repeat..:》... it'll help your skin feel flawless for Thanksgiving♡♡ goodluck!!
unexpected_everything : #1 rule, don't do anything drastic! Don't change your skin care routine right away or it will knock out your face and could be worse! Stay away from acid based face washes, honestly I use to use it and there was no point! I have PCOS and sensitive skin on top of that, so I use benzo peroxide at 10% after I was it with normal Johnson and Johnson baby wash, and let it dry. Leave your HANDS OFF and wash your makeup brushes weekly! Hopefully that helps a little ❤️❤️
onedayatatimenatalie : @teighla_kapp thank you lady. I've tried baking soda and I had a reaction! My face peeled and broke out like crazy lol. I'm sure it'll go away with my routine, it's just stress and hormones. Blah! Lol. Happy thanksgiving!
onedayatatimenatalie : @unexpected_everything so yes...I did change my routine! Not on purpose.... I ran out of my normal cleanser and switched to...OMG I forgot what it's called... "Simple"or something like that? It's not for me! Lol thanks pretty, happy thanksgiving!
pregnancy_lifestyle - valery.mg - ccottrellxxx - courtneymarie_xo_ox -
If you could see this pic, then you are already more fortunate than she will ever be.. Be grateful for who we are and appreciate what we have #giveback #hydrocephalus #congenital #lifeisnotalwaysfair
jevonatmabrata : Siapa tu ko?
anthonytedjop : 🙏🙏🙏
marcellasudarmo - michellepangemanan - ynrwg - nirmalahendrata -
It's the day after shunt surgery, and Rylen may be the happiest patient in the whole damn hosptial. #hydrocephalus #seerylengrow #sevenmonthsold For those who have followed Rylen's journey with hydro, after Monday's MRI, it was decided that her ETV/CPC procedure, while helpful, wasn't a long-term solution. Her ventricles were still enlarged and had gotten a little larger from the last scan. We love her doctors and nurses at Children's in STL, and we have lots to be thankful for!
katelynkester : She's one precious little girl:)
katrinapitts_hamlett : Good lil trooper!! Prayers are with y'all @janalynnie
jesshamp10fit : She looks so much like her cute mama ☺️ You made over!
brittmkirk : 🙏🙏🙏🙏
terriking9785 : Love and Prayers !!!
junebugsmomma : Little warrior!!! She is a doll!!
terriking9785 - aliciadb25 - catpeeler - kaytie____ -