Morning!🌼 hi as you may or may not have seen already. I'm raising money for my youngest daughter Minnie, who has Spina Bifida and Hydrocephalus. Sadly she was born paralysed from the waist down, so atm I am trying to raise enough money to buy her a tiny wheelchair called a ZipZac all the way from the U.S. Check out the link on my Instagram. The NHS refuse to fund any mobility equipment until she's 3 years of age, but we both know toddlers get about around the age of 1 & this wheelchair can be used by toddlers that young, mostly indoors. She will hopefully learn to manipulate the wheels, reach for toys in this chair & it will prepare her for the real thing. It will not only help her upper body strength, but her mental development too. There is only so much you can do laying down like she does day in day out, whilst other baby's her age are starting to walk! The ZipZac itself is $2,000 & we are almost halfway there already, but the fundraising has slowed down & Minnie needs your help... Every single pound makes a difference! Every single share helps with awareness! To donate please go on if not please do just share as every bit you do, helps with not just the fundraising side of things, but awareness too. The full story is there and photos, as well as information on those specific disabilities ❀️ thank you for reading & for those who have already donated - a huge thank you. x x x x #spinabifida #hydrocephalus #paraplegia #sbbaby #sb #sbmum #sbmummy #disabled #babygirl #9monthsold #mobility #fundraising #wheelchair #zipzac #donate #donations #pacc #arnoldchiarimalformation #hydrobaby
sbbaby - babygirl - fundraising - mobility - 9monthsold - sbmum - paraplegia - disabled - sb - arnoldchiarimalformation - pacc - wheelchair - sbmummy - hydrocephalus - donations - spinabifida - hydrobaby - donate - zipzac -
verityleighsadlierx - _xxkayleighx - chronicallyliving - trixiebelletiathomas -
It's crazy to think the top picture was taken 4 years ago today, after I had an ICP monitor placed (I look so much sicker than someone who's only had that done, it's kind of weird actually). I am so thankful that I don't remember it to be completely honest. I love how my memory works in that way; allowing me to block out the bad things, meaning there are many experiences I don't remember (like the majority of last February) and I'm okay with that. It makes everything so much easier, especially when trying to cope, and come to terms with how sick I am/was at these times. This was the first of several surgeries I had over a 19 day period (I had 4), and not one of them got any easier than the previous one. It never gets easier, and that sucks, because I was really hoping it would after having had almost 30, but nope πŸ˜‚πŸ˜« okay, I think I'm done now, sorry for the long-winded post. #hydrowarrior #hydrocephalus #coping #strength #timehop #brainsurgery #neurosurgery #InstaSize #itnevergetseasier #thatslifeforya #brave #inspiring
thatslifeforya - inspiring - timehop - coping - itnevergetseasier - hydrocephalus - brainsurgery - instasize - neurosurgery - brave - hydrowarrior - strength -
blank_space22 : You are brave and very inspiring. You are also a very strong and cool person. I hope nothing but light for you. :) x
futuremrsbiebs : @blank_space22 awh, thank you so much, that means a lot to me! :') πŸ˜˜πŸ’•
linhnguyen98 : You are so brave and very inspiring! You are so strong!❀️
stacygriffin1 - linhnguyen98 - brittiiiiiiny - joy2livlife -
Miss Scarlett is resting well. If you notice she is off her vent! Yay! She came off last night. We will start her back on feedings tomorrow. Hopefully she does well. #strengthofscarlett #scarlettisfantastic #spinabifida #niculife ##hydrocephalus #hydrowarrior #hydrolife #shuntlife #littleandbrave
niculife - hydrocephalus - hydrolife - shuntlife - strengthofscarlett - scarlettisfantastic - hydrowarrior - spinabifida - littleandbrave - toughkid -
quirkiekids : So so sweet!!!!!
bella_rosa4 : This poor poor baby she has been through way to much!
lilcas17 : @bella_rosa4 Shes one #toughkid
jvrobles5 : @lilcas17 Oh I'm so happy to see this post
cosorio4 : oh Praise the Lord for no vent! praying feeding goes well.
lulu17hall - mcdonald_dee - justfreshmunchkinz - inspiredmgr -
Parkers ventricles at their worst compared to today!! They've gotten so much better in such a small amount of time:) I'm so proud of my strong little man.
hydrocephalus -
ashleymaycalkins : #hydrocephalus
nbusness - neulahstarship - 11nenovak - judesmommy3414 -
My sweet baby!! #mommy #love #family #happy #son #kisses #hydrowarrior #hydro #hydrocephalus #cerebralpalsy
love - family - hydrocephalus - mommy - kisses - son - hydrowarrior - hydro - cerebralpalsy - happy -
sren57 - krystal_hornbeck - sargent_bobbie03 - charliesangel729 -
Click the link in my bio to donate!! #TeamJared #JaredsJourney #SpecialNeedsParenting #LoveWins #FamilyFirst #FundraisingForACause #HelpingHands #ShuntsQuitWeDont #hydrocephalus #cerebralpalsy #epilepsy #wheelchairs #kidsinwheelchairs
lovewins - specialneedsparenting - hydrocephalus - epilepsy - teamjared - helpinghands - kidsinwheelchairs - familyfirst - fundraisingforacause - wheelchairs - shuntsquitwedont - jaredsjourney - cerebralpalsy -
pigmy918 : I may have speakers :)
themrsmflores : @thefishla please share Jared's story on your Facebook page! Thank you!! πŸ™πŸ™πŸ™
themrsmflores - omgitsmichelec - jenn_1_24 - brittnjazlynn -
Dentist appointment, this #bib came in handy. Jboo stayed DRY!!! Yes #custombibs #customized #cute #hydrocephalus #specialneeds #specialneedsmom #specialneedskids #jboosway
specialneeds - cute - bib - hydrocephalus - customized - custombibs - specialneedskids - jboosway - specialneedsmom -
fitwithannie - printact - pritty_pajaro - jaxons_journey_home -
#Matilde #MatildeMaligna #HydrocephalusPuppy #Hydrocephalus #Deaf #Westie #WestHighlandWhiteTerrier Una de las secuelas de la Mati son sus temblores de cabecita. Cuando se agita mucho es más notorio. Han disminuido bastante. Antes eran todo el tiempo 😊❀️🐾 #Rescue #RescueDog #Rescata #SalvaUnaVida
westhighlandwhiteterrier - rescue - matildemaligna - hydrocephalus - deaf - hydrocephaluspuppy - salvaunavida - rescuedog - westie - rescata - matilde -
koraxouber69 : Awwww
vilitos_design : Chanchita, igual es hermosa.
valitostore - rusttatarin - thisgirllucx - yyukiyo520 -
I can't wait to see Dr. Swift this summer. Maybe he can can help me find out why i get headache evernight and evermorning. #Hydrocephalus
hydrocephalus -
amandamaegriffin : Sorry little sis ! It Mike be for worrying !
ennairb - hydrocephalus4life - kalbutler -
Puppy cuddles for her sickie friend πŸ’š #rescuedog #Chihuahua #furbaby #cerebralpalsy #hydrocephalus #hydrobaby
chihuahua - furbaby - rescuedog - hydrobaby - hydrocephalus - cerebralpalsy -
rrdancer15 : Is T ok? Hope he feels better
smitty_gram13 - ianmommy4 - rrdancer15 - lisamcpartland7 -
Went to see our #neurosurgeon for #followup appt today. Good news! We don't have to see him for a year!! (unless there's an issue) #DrLeonardrocks #hydrowarrior #3monthsstrong #shuntlife #hydrocephalus #Jordanisafighter
followup - drleonardrocks - hydrocephalus - jordanisafighter - 3monthsstrong - shuntlife - neurosurgeon - hydrowarrior -
riverandgraceco : Handsome boy πŸ’›
mly0707 - jstein0109 - lexilulu_95 - jkcaraker -
Posting a little (blurry) Corvo cuteness to brighten up your day. POW POW give me the kisses <3 <3 #mylittleraven #hydrocephalus #hydrowarrior
mylittleraven - hydrowarrior - hydrocephalus -
lostwagesphoto : What a cutie!
haley_katherine : Aww so cute!!
kljmaddog - tashychristine - haley_katherine - awallfisch -
Cameron did SO good in therapy today! He was tolerating quadruped for a few minutes and bearing some weight on his legs! So incredibly proud of him today and everyday! #therapythursday #supercam #camspam #veinofgalen #hydrocephalus #hemiplegia #17months #miraclebaby #mokabear
miraclebaby - mokabear - hemiplegia - hydrocephalus - supercam - veinofgalen - 17months - camspam - therapythursday -
xo_lovelo - carrollinebarnett - ella_da_bella - ha_walk_charlotte -
Tonights homework #vilhellerespiseslikogsedowntonabbey #shuntlife #hydrocephalus
hydrocephalus - vilhellerespiseslikogsedowntonabbey - shuntlife -
zannaibina - piasfarveunivers - mitskonnekaos - stinekaja -
The nurse said "what's wrong with you ? Your veins are all squiggly.." #Hospital #Again #Nurse #ImBored #IV #Blood #BloodSample #CtScan #Brain #Hydrocephalus #HydroWarrior #RelentlessPursuit #Tattoo #ZodiacSign #Aquarius
again - aquarius - tattoo - hydrocephalus - hospital - imbored - ctscan - bloodsample - relentlesspursuit - iv - brain - hydrowarrior - blood - nurse - zodiacsign -
dougvoshal : Sorry you have to go through all this!!! Patience is a virtue! Hopefully after all this they will be able to figure out the issue! @lalalalinds_
lukepaton : Tell her to mind her own business... There is nothing wrong with you! You are perfect my friend @lalalalinds_ xx
anitantran : I hope you feel better 😘
lalalalinds_ : Aww thanks @lukepaton . I've never had a good IV and I think that's why.. They can never find my veins ...
lalalalinds_ : Thank you guys, I hope so too !! Cause it's no fun @anitantran @dougvoshal
lukepaton : But still.... There is nothing wrong with you! You are perfect in every way, including your beautiful hydrocephalus head :) @lalalalinds_ x
beardacolypse - raig_hney - abigail_khinotskiy - dougvoshal -
Elijah with Todd, the hospital therapy dog. I've been reliving the Month from Hell for a few weeks. #tbt #timehop #hydrocephalus
timehop - hydrocephalus - tbt -
obedceballos - jester243 - theozonsports - roxy945 -
He lights up my world, with his contagious smile! πŸ’ͺπŸΌπŸ˜πŸ’šπŸ™ˆ
blind - chronicpain - braindamage - blessing - thankful - dystonia - dystoniccerebralpalsy - spastic - scoliosis - visuallyimpaired - qaudriplegic - seizures - wheelchair - hydrocephalus - brainstem - traumaticbraininjury - severepvl - brodoyouevenroll - wheeliesforlife - vpshunt - cerebralpalsy - happy -
mhansen21 : @mich_logan β˜ΊοΈπŸ™‡πŸΌ
sunshinedawn_ : πŸ’šπŸ’šπŸ’šπŸ’š
camo_princess09 : That beautiful smile
t_l_harris07 : Amazing....beat ALL the doctors odd....u r a fabulous momma!!!@mhansen21
cloud0086 : He really does 😍😍😍
kariz_rae_mom : 😩😩😩😩😍😍😍😍
deysilovesu : β€οΈπŸ’š
glamfitmom : Check out my last post Javita ' s Energy +mind coffee, it has helped my friend manage her seizures and we have cocoa too that has the same ingredients
spmaynard1 - thedandelionfund - don_angel92a - joy_music007 -
Any #starnow user that is a #composer or knows a lot about #music theory wanted to compose a #rockopera #comicbook album about #hydrocephalus ! #rock #musical #sydney #australia #superhero
australia - superhero - sydney - rockopera - rock - hydrocephalus - music - composer - comicbook - musical - starnow -
michelle.chui - gretsch1955 - elf.princxss - liammihos -
'He will never move his legs' they said... Every little bit counts! #spinabifida #spinabeautiful #brantley #babyboy #hydrocephalus #shunt #chiarimalformation #provethemwrong #babyfeet #brantleysbigadventure
shunt - babyfeet - provethemwrong - hydrocephalus - brantleysbigadventure - brantley - chiarimalformation - spinabifida - babyboy - spinabeautiful -
thecoralpear : Cool!
queenbunch : So exciting. This made me teary. Stay strong, Brantley.
pringlea - twlmomma - katieelouu_ - stephimarie22 -
Hi everyone! I only just made this account and I'm loving the feedback! I've been wanting to connect with other for so long and since I'm starting to accept myself and realising its not my identity, I think now is the time. Some of you I already follow on my personal account (this photo). Thanks for following lovelies x #spinabifida #spinabeautiful #hydrocephalus #vpshunt #justbiffinon
hydrocephalus - justbiffinon - spinabeautiful - vpshunt - spinabifida -
juanmedina83 : You are not a lone
amandacatalano3 : Welcome to the pack! I have Myelomeningocele! Just remember, you have spina bifida, spina bifida doesn't have you! Keep on keepin on, if you ever wanna talk I'm here! @annastagram___
annastagram___ : Thankyou so much!! @juanmedina83 @amandacatalano3 it means alot to have people responding like this!
wheelcool25 : Cute pic, and like amanda says you have spina bifida, it does have you or control you, keep being your awesome self
blasfemmeous : I'm in my thirties and it took me this long to grasp that concept, so good on you for catching on 10 years sooner than I did :)
annastagram___ : Thankyou @wheelcool25 @blasfemmeous xxx You're all amazing
mrsbmw1019 : Beautiful pic! I have SB, too. My parents were told I'd never walk. Well, I walk unaided & only have a slight limp. Yes, I have my issues with SB but it doesn't define me. I may have SB but it doesn't have me! #ttsb!!
mayala0314 : Awesome! I too have SB and I love that we all agree it shouldn't and doesn't define us! Hope to connect with more with SB as well :)
mrsbmw1019 - latinamonkey037 - pringlea - _melaniealexis -
Finally got my nose pierced after wanting to get it done since the age of 15. I was too chicken at the time, yet I didn't even flinch when it was done πŸ˜‚ I'm kind of just a little bit impressed by that, but, I mean, once you've had stitches put into your head while unfrozen and wide awake, and not to mention brain surgery, everything else is a breeze πŸ˜‰πŸ˜‚πŸ‘‹πŸ» #InstaSize #nosepiercing #yay #doneschool #presenttomyself #loveit #finallydone #smiling #selfie #didntevenflinch #imimpressedtoo #brainsurgery #stitches #hydrocephalus #hydrowarrior
yay - presenttomyself - selfie - hydrocephalus - brainsurgery - imimpressedtoo - instasize - didntevenflinch - finallydone - hydrowarrior - loveit - nosepiercing - smiling - doneschool - stitches -
linhnguyen98 : So cool!
futuremrsbiebs : @linhnguyen98 thank you! πŸ˜„
vikingfrog86 : Looks nice, also glad it's not a bull ring :)
futuremrsbiebs : @vikingfrog86 thank you! Hahaha oh me too πŸ˜‚ I don't think I'd ever get that type of ring, I'm fine with just a stud 😜
aleejandrojo - elissas_kins25 - rach_watsonxo - hake1em -
How bad is falls had gotten before shunt was placed Vpshunt #hydro #hydrokid #hydroWarrior #hydrocephalus #hydrocephalusawareness #hydrocephalusassociation #allforacure #shunt #vpshunt #shuntlife #cureforhydrocephalus
shunt - hydrocephalus - shuntlife - hydrocephalusawareness - hydrowarrior - cureforhydrocephalus - vpshunt - hydrocephalusassociation - allforacure - hydrokid - hydro -
brockiesmom - _amanda_orellana_ - leahamoore -
My hydro baby throwing ball with sis <3 Vpshunt #hydro #hydrokid #hydroWarrior #hydrocephalus #hydrocephalusawareness #hydrocephalusassociation #allforacure #shunt #vpshunt #shuntlife #cureforhydrocephalus
shunt - hydrocephalus - shuntlife - hydrocephalusawareness - hydrowarrior - cureforhydrocephalus - vpshunt - hydrocephalusassociation - allforacure - hydrokid - hydro -
brockiesmom - sofiya_zueva - duke_thetoddler - leahamoore -
My hydro baby taking a ride #hydroWarrior Vpshunt #hydro #hydrokid #hydroWarrior #hydrocephalus #hydrocephalusawareness #hydrocephalusassociation #allforacure #shunt #vpshunt #shuntlife #cureforhydrocephalus
shunt - hydrocephalus - shuntlife - hydrocephalusawareness - hydrowarrior - cureforhydrocephalus - vpshunt - hydrocephalusassociation - allforacure - hydrokid - hydro -
agnipratistha - l_sanchez68 - tauva - leahamoore -
Scarlett update...I wish i had some awesome amazing news but I don't. She is going on for surgery #7 tomorrow afternoon. She is collecting spinal fluid at the botoom of her head in both sides...we have been monitoring and its just collecting fluid and cannot drain with the rest of the fluid so one shunt won't do. She will go in for surgery for an additional TWO stunts...I'm super bummed...this means we will be back on a vent....back with iv's and it feels like we just got off all that and it feels like we're going backwards yet again.... #strengthofscarlett #Scarlettisfantastic #niculife #shuntlife #spinabifida #spinabifidababy #hydrocephalus #hydrowarrior #chiarimalformation #littleandbrave #toughkid
niculife - spinabifidababy - hydrocephalus - shuntlife - strengthofscarlett - scarlettisfantastic - hydrowarrior - chiarimalformation - 7 - spinabifida - littleandbrave - toughkid -
lilcas17 : Thanks Jerri! You can hold her when Ya visit @jerricochran
lilcas17 : Her back is healed and she isn't on the thing she was before that kept us from holding her. ;)
wheels4legs : Prayers for you and yoursπŸ™πŸΌ
irun4elijahandnoah : πŸ™πŸ™πŸ™
myfatherisaking : @lilcas17 sorry to hear. setbacks are temporary. Scarlett's strength is beyond measure! Sending πŸ’—& prayers #strengthofscarlett #hydrowarrior
lilcas17 : Thanks Sonya!! @myfatherisaking
stephloves2shop : She has lots of prayer warriors that's for sure! I'll be nibbling on those chubby arms soon!
lilcas17 : @stephloves2shop <3 <3 <3
mariah_whaley - nezy143 - salon391 - jerricochran -
Loving his grilled cheese panini #myboy #tims #timhortons #trenton #novascotia #grilledcheese #chocolatemilk #pictoucounty #hydrocephalus #teampurple #family #epilepsyawareness #famjam ,#hydrowarrior ,#love
trenton - famjam - teampurple - love - pictoucounty - family - tims - myboy - hydrocephalus - epilepsyawareness - novascotia - hydrowarrior - chocolatemilk - timhortons - grilledcheese -
btowngirl12 : Pretty!
taracamilleoconnor : @btowngirl12 thank you
taracamilleoconnor : @timhortonsus
zookeeperjosh : Awesome!
ifyca0 - awareness_for_all_ - cheddargcco - zookeeperjosh -
#mygirl #daughter #redheads #redheadshavemorefun #mother #hydro #14yearsold #hydrocephalus #love #family #instafam #instalove #strongwomen #hydroprincess
redheadshavemorefun - daughter - redheads - family - instalove - strongwomen - hydrocephalus - 14yearsold - mygirl - hydroprincess - mother - love - instafam - hydro -
caroline_audrey - sober_up_portland - brandondhile - moda_younique -
Super Cam turned 17 months old yesterday! He weighs 21 pounds on the dot and is almost 33 inches long. He is sitting up like a pro and getting better at rolling. He also learned how to spin himself with his arms in his exersaucer. He's doing so good in all of his therapies and we couldn't be more proud of our little miracle baby. πŸ’™πŸ˜ŽπŸ‘ΆπŸ™Œ #17months #supercam #camspam #veinofgalen #hydrocephalus #hemiplegia #miraclebaby
veinofgalen - miraclebaby - 17months - hemiplegia - hydrocephalus - camspam - supercam -
larinhaol : Lars will turn 17months on the 27th. Super Cam is doing amazing.
junebugsmomma : He is pretty awesome!!
lucky_year : Clever boy πŸ‘πŸ‘πŸ‘πŸ‘
hb313 : 😊 He is So cute.
ktpie4141 : Thank you! Can't wait to see your little guy:) @hb313
ktpie4141 : 😊😊😊 @junebugsmomma
ktpie4141 : Thanks you! So is Lars! @larinhaol
xo_lovelo - carrollinebarnett - ella_da_bella - mus1cal_as1an -
#bellafrancis #3months #timeflys #hydrocephalus #diva #fighter
fighter - 3months - bellafrancis - hydrocephalus - diva - timeflys -
alyssaspieth -
"Tillykke med shunten" Jannick #185sugeries & Vera #29surgeries #hydrocephalus #shuntlife #hydrowarriors #hydrofamily
hydrofamily - hydrowarriors - 29surgeries - 185sugeries - hydrocephalus - shuntlife -
christinafjo : Åh ❀️
lealykkegaard - lineleth - christinafjo - stinekaja -
Test test test. Denne seje 4 åring bliver i øjeblikket udsat for 2 tests om dagen a en times varighed. Der er neuropsykolog, ergoterapeut, fysioterapeut, neuropædsgog og talehørerlærer. Hun klarer det så fint - men pyha, det er også hårdt. Korttidshukommelsen er skadet - og det kan åbenbart ikke genoptrænes med varig effekt. #hydrowarrior #hydrocephalus #shuntlife #hjerneskadecenter #verafiluka #evigelsk
evigelsk - hydrowarrior - verafiluka - hjerneskadecenter - hydrocephalus - shuntlife -
lineleth : Hun er i sandhed en warrior - og en skøn en af slagsen πŸ˜πŸ’•πŸ’•
mettehellerups : πŸ’œ
luluappelquist - mettehellerups - mmetle - hsr1971 -
Heute tag des untergangs..#untergang #doom #deutschklausur #danachneurologiemündlich #hilfe #hydrocephalus
hilfe - untergang - deutschklausur - doom - hydrocephalus - danachneurologiemΓΌndlich -
yannickaude : Für dich doch #easy
bimberly_k : Jaa war besser als erwartet! @yannickaude
yannickaude : πŸ‘ŒπŸ˜Š
lukepaton : Sorry for the random message... Found your Hydrocephalus hashtag and as I have Hydro I thought I'd message :) x
germerican1984 - mrbohn - habibibl0cksberg - yannickaude -
Prayers <3 great lawyer taking our case. Praying we can get some justice for clayton and make sure that no other child or family has to go throw what we went throw. No child should be over looked !well child checks need to be done properly! Premies need to be age adjusted! Parents should be listen to and mri should be provide at the first signs of hydrocephalous! No child should suffer like mine. No child should be neglected by a doctor or a clinic. No mother should cry herself to sleep like I did cus I was alone in my fight for someone to listen and help my baby. Let's never let this happen to another child. No doctor should tell a mother that .... this is civilian medical and you don't just get referrals because you think somethings wrong this isn't the military!!! . #hydrocephalusawareness #hydrocephalus #hydroWarrior #hydrokid #hydro #shunt #shuntlife #vpshunt #justiceforclayton
shunt - hydrocephalus - shuntlife - hydrocephalusawareness - hydrowarrior - vpshunt - justiceforclayton - hydrokid - hydro -
brockiesmom : Your such a strong mom!!!! And mr. C is lucky to have you fighting for him. Our hydro boys are amazing :)
lauramamoore : <3 @brockiesmom hydro mommy power
tauva : Would you mind sharing the details of your story? {hugs}
lauramamoore : @tauva you can pm me if you want on Facebook
agnipratistha - mamaof9blessings - brockiesmom - leahamoore -
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