spraypal - fullability - keedyj12 - pbucka -
@loveforalyna_ we'll miss her so much! #heartbreak! #loveforalyna #alyna #childhoodcancer #hydrocephalus #braincancer #childhoodbraincancer
loveforalyna - alyna - heartbreak - hydrocephalus - childhoodcancer - childhoodbraincancer - braincancer -
Don't forget friends today is the day to come in and eat at big wave and help out for a foundation. Will be donating 15% of your bill to the pediatric hydrocephalus foundation. So come on in and eat to donate. #capemay #hydrocephalus
madmermaiddd - doug__e_fresh - triciavalencia - opal_and_pickle -
madonnalogue : Today is the day! @bigwaveburritos #capemay #fundraiser #hydrocephalus If you are unable to make it and still want to make a donation, please follow this link:
madonnalogue : http://www.active.com/donate/phfsnj
maddy_g_629 - alyse_tang - soupyb86 -
My new medical bracelet finally came in :) it's so pretty 😊 thanks mom! @mamalei59 #medicalbracelet #health #hydrocephalus #medical #bracelet 😍
saranickel916 : #laurenshope
vera_c24 : I love ! Mine is a old ugly lol
t_lynne66 - nicolerachelley - mjnjessie - wonderpannts -
Meet Alyna. I've never seen her in person, I've never held her in my arms but instagram has allowed me to be there on her life journey. She is a beautiful baby girl and her mother is even stronger. I think it is inspiring how she deals with the life chosen for her daughter. Anywho, I left her ig name visible in hopes that you will read upon her story and honestly pray for them. This could be any of our daughters. They are literally watching their daughter's life fade away right before their eyes. #CancerSucks #Hydrocephalus #LoveForAlyna #NeverTakeIt4Granted #Life
bossysincebirth : A beautiful girl dealing with a situation bigger than she is. My prayers are sent to our Heavenly Father for peace understanding and healing for her and her parents.
piesworld : 🙏
gabbyluvsyooh - piesworld - mzhoney8 - nikkibang -
heart - head - scan - brain - ct - radiology - awkward - iphonograph - medical - radiographic - hydrocephalus - iphonesia - iphone - nice - picoftheday - photooftheday -
asty_ananta : Aaaaaawwwww!!! Romantis mode On ni ya ceritanyaaa? 😉
doctor_irv : #iphone #iphonesia #iphonograph #ct #scan #radiology #radiographic #head #brain #heart #hydrocephalus #awkward #nice #photooftheday #picoftheday #medical
janicemuliadi : #gombalradiologist
doctor_irv : @asty_ananta hahaha. Lagi kumat, Asty.
doctor_irv : @janicemuliadi betul! Hashtag nya kurang. Hohoho.
andreaskaryadi - asty_ananta - retechsmartphones - arieslukman -
Beautiful as ever even after 102. My hero ❤️🙏 so proud of you bia, you are one amazing women @_jbjohnson #hydrocephalus
kadley : she's gorgeous even right after surgery! thinking of you both ! love you lau!!! ❤️ @laur2314
laur2314 : Thanks Katie ❤️❤️ @kadley
_rachelaz - andyvenez - aderrig - nicolletteeexoo -
Comment if you need more details. #hydrobabies #hydrocephalus #preemies #specialneeds #cerebralpalsy #MOD
_christina__xoxo - philbonanno1 - emilybsh - julia_natkaniec -
nataliev89 - dogaish - audreymarietta - yourstudymate -
aysha__alkaabi : #Hydrocephalus
aysha__alkaabi : #Headaches #sick #kids #children
mohd_aalb - mak1551 - mohd_alsayyah - ramz_bliss -
- the depression is REAL my meds aren't working like they normally would, my body is swollen w| UNWANTED (Or needed) fluid so it hurts to move, these illnesses of my own mixed in w| the conditions, diseases, and illnesses of my baby girl are weighing me dowwwn ! I just want to wake up one morning and be stress & worry fre want to wake up one morning and be stress & worry free ! #isthattoomuch #stressfree #worryfree #mylifeinruins #nohelp #justpain #tears #sorrow #hurt #agony #norest #teamnosleep #teamlondon #hydrocephalusbaby #hydrocephalus #shunt #vpshunt #csf #cerebralspinalfluid #autism #autistic #dyspraxia #epileptic #epilepsy #seizures #depression #anxiety #panicattacks #hashin
seizures - cerebralspinalfluid - justpain - hydrocephalus - panicattacks - sorrow - epilepsy - worryfree - nohelp - stressfree - hurt - hashin - dyspraxia - norest - depression - teamnosleep - anxiety - hydrocephalusbaby - shunt - autistic - agony - csf - epileptic - autism - isthattoomuch - tears - mylifeinruins - vpshunt - teamlondon -
ricia_g : Pray for the your strength cuz. Everything is in his hands so try not to worry. I love you & everything gonna be ok!
coldheart3d : You can handle it! God won't put more on you than you can handle
keey_rawww - dreaminginautisticcolors - sir_florian - _demarriee -
No school today for #MyCerebralPalsyPrincess or little Laura! Gonna have a great day with my little loves! ❤😊
nofilter - soblessed - hydrocephalus - mycerebralpalsyprincess - bejealous - cerebralpalsy - shesthebestcuddler - shesgorgeous -
ashley_bbl : #nofilter #cerebralpalsy #hydrocephalus #shesthebestcuddler #shesgorgeous #bejealous #soblessed
zakkays7 : Awe you two look beautiful <3
dianaadieh - stephrochford - kaitlyntianna - painting_wolf -
So many #blue #cars. And then apparently a #bus. #hydrobabies #hydrocephalus #preemies #cerebralpalsy #specialneeds
dragonflyyy80 : Singin like his papa!
lly712 : Haha aww!
beatadirycz : So cute!
dminer143 - rachelgsmith - bornbeautyy - twinmom1126 -
Life isn't about waiting for the storm to pass, but learning to dance in the rain💪😎💙💛💊💉😷#hospital#therapy#dogs#hydrocephalus#for#a#cure#jope#hydro#hope#live#laugh#laugh#love#therapy#dog#cinderella#follow#for#follow#blue#ribbon#csf💙💙💙
blue - csf - love - cure - therapy - laugh - follow - ribbon - a - for - jope - hospital - cinderella - hydrocephalus - dog - live - dogs - hope - hydro -
cmataya : Especially when you can dance with such a sweet dog! 🐶
cmataya - mmellayy - flaca_a_j_ - adriheartmiah -
This boy amazes me every day. You would think with his shoulder and elbow he would be crying, feisty, and fight because of the sling and the pain, but nope, he is happy as usual...especially in the picture bc Daddy just started his semi to move it. #sweetboy #cooperscrusade #achon #achondroplasia #dwarf #dwarfism #hydrobaby #hydrocephalus #hydrocephalusawareness #littlepeopleofamerica #lpa #lpautah #22months #charliebrown
dwarf - sweetboy - lpautah - hydrocephalus - achon - achondroplasia - hydrocephalusawareness - charliebrown - hydrobaby - 22months - littlepeopleofamerica - cooperscrusade - dwarfism - lpa -
dreambiglittleones : Yay!! Big boy!
livdanegerous : Ohhhhh NO poor sweet Cooper! I'm sure he's so sore! Sending him so much love! Please kiss his perfect little nose for me! Love to you all 🙌🙌🙌🙏🙏
livdanegerous : Ps you have a lovely smile honey ❤️❤️❤️
prayersforellie : Such an amazing boy!
beautyfrompain91 : His eyes ♡♡♡♡
r_lynn14 : New follower! Such a precious little! Sending lots of love from one hydro mommy to another ❤️
crystalz79 : Those beautiful blue eyes and that face melt my heart...my son also has Autism so Im so happy to meet another mommy that I can relate to😍😍😍😘😘😘
efd78 : He smiles with his eyes! How wonderful!!! Such a sweetheart!!
lilianjane101 - caityd33 - tr9dej88 - super__nona -
Done with work for the week... So bring on the weekend hair-do. Feels so much better than covering it up. 2 1/2 weeks out! #hydrocephalus #shuntlife
amy_booher : @nikihargitt no, not really... Maybe a tiny bit more these past two surgeries. Silly doctors... They love this hairstyle for me. :)
pdxhollym : You are beautiful.
amy_booher : @pdxhollym thanks Holly ♥♥♥♥♥
beauty_and_the_corgi : I haven't had shunt surgery since I was 6 but this hair do scared me as a teen but u rock it :)
amy_booher : @beauty_and_the_corgi thank you. You can't let the hair cut scare ya... It covers up pretty easily.
beauty_and_the_corgi : Yea now that I realize it I'm ok but they don't think it will malfunction again
amy_booher : @beauty_and_the_corgi that's awesome. :) I wish mine would start behaving for a little while so I can have time to grow my hair back out ;)
beauty_and_the_corgi : Lol good luck :) I'm going on 19 years no surgeries
ashley_biggs_ - edwardlover562 - the_one_the_only_tate - cocoasushi -
r_lynn14 : This is going to sound sooo creepy but I am so glad to have found you here! My son Reid has hydrocephalus and I recently just joined the private hydrocephalus group on Facebook and I've seen you post there about your daughter and I just wanted to tell you that I admire you and your story is so beautiful!
melodygrote : Not creepy at all ! Thank you♡♥♡
la_rowell - cheryl_mauro_garay - katieleekogen - carlicc11 -
1 in 500 babies have hydrocephalus 50% of pregnancies diagnosed with hydrocephalus terminate. This has been on my heart for a little while now. I want to further share Jamison's story. This is not to "explain his tubes" but to spread awareness. I got Jamison's MRIs out to show our OT, because she couldn't believe the way I was explaining his brain in comparison to how he is. Needless to say she was absolutely amazed! I've been explaining his brain to friends for awhile now but for some reason hesitated to share his pictures. I figure if this can help just one person, change their mind about terminating a pregnancy with medical issues, than it's worth it. The first photo is an MRI of a normal infant brain (Google), the second is Jamison's MRI (pre shunt- it hasn't changed since the shunt) the next is a side view of a normal brain and finally the side view of Jamison's brain. Feel free to share and ask me any questions. Knowledge is power! #hydrocephalus #porencephaly #ventriculomegaly #hydrobaby
rochelle32101 : I just began following u. Idk how u found me but I'm glad u did. My son also hasn't Hydro. He was born at 23weeks and suffered a brain hemorrhage at 3 days old. These images really hit close to home. Up until now I'd never seen such dramatic images of an mri. I thought my son's was pretty severe but u can almost see no brain matter what so ever in his little skill. That's amazing isn't it. I remember whem my son's neurologist first spoke to us after hearing the worst of the worst. And he gave us so much hope. The doctors who had written him off suggested I should take him off life support due to the poor quality of life he would lead. But this neuro said to me words I will never forget. He said don't look at the images, look at ur baby. See how he's doing clinically. The brains are so premature at that time that they find ways of "rewiring" themselves and creating new pathways. He said in his experience he'd seen images that looked a hundred times better but then u see the child and they were severely handicap. And then their were images like that of my son's, where there was virtually no brain matter cuz it was so pushed up against the skull and they were doing fairly well. My son was given the dreaded statistics that he would be severely handicap by 90% but this doctor told me it's still possible, a small percentage that he could turn out "ok". Well I took that 10 % and ran with it. It was all the hope I need, that light at the end of the tunnel. It's been a rough 22months, including 2 brain surgeries (an endoscopic Septostomy and vp shunt placement). Mikeys whole team of specialists are simply amazed by his progress. Although it's been very slow and he's still extremely delayed, he's doing better than I could have ever hoped for. Posts like this continue to give me hope. Thanku for sharing and sorry for rambling, lol, I do that alot :/ God bless
_amber_bishop_ : Hi @chelseahyndman, my son also has hydrocephalus.. So is the shunt not working? My sons shunt has malfunctioned twice this past year and has required two revisions.. His ventricles are larger now than they were when the shunt was placed...
chelseahyndman : @rochelle32101 I love what you said don't look at the images look at your baby!! Did/does Mikey's MRIs look similar to Jamison's? I'm so encouraged to hear story's like Mikey's! He's so adorable!!
chelseahyndman : @_amber_bishop_ these images were before his shunt placement. At first they didn't think he was going to need a shunt because there was no pressure on his brain. But after a month the fluid was building and he ended up needing a shunt. Now almost 3 months after his shunt placement his brain is back to looking like these photos. Does that make sense?
r_lynn14 : Thanks so much for this! Love finding other hydro mommies! My son Reid, was diagnosed at 5 months old with external hydro, and was shunted just before his first birthday last November! I never in a million years expected my baby to have hydrocephalus! But since his shunt he's a totally different little boy! It scares me everyday though knowing that shunts are only a temporary treatment and that he will likely need a revision at some point. Hydrocephalus needs a cute! @chelseahyndman
r_lynn14 : Cure*
chelseahyndman : @r_lynn14 I haven't heard of external hydro!
r_lynn14 : That's how reid was when we first found out, they were really hopeful that he would out grow it and not need a shunt because starting out even though he had a lot of fluid on his brain it was on the outside instead of the inside and he wasn't having any issues with pressure.
paige_hammarlund - lleeamy - brenskizzle - rahrerbm -
This lady is 18 months old today! We haven't had a chance to shoot her super hero half birthday picture just yet so here is the majesty of last year's half birthday photoshoot! #novagram #superhero #superbaby
superhero - ttts - hydrocephalus - miracle - micropreemie - superbaby - twintotwintransfusionsyndrome - vpshunt - novagram -
karinleigh : How are our girls 18 mo already?! (Well mine in 2 days but STILL)
blueslostclue : Love this so much! Fly high Super Nova!!
ashleewellsjaxn : @karinleigh it doesn't seem possible does it?!
fumalounge : @natalieg153
maarijke : @ashleewellsjaxn Just had our LLL meeting today and a mom who has been coming since the beginning opened up and talked about her twins medical history. Her son has hydrocephaly and she was told he would never speak nor walk. Today he was toddling all over the place, jibber jabbering and laughing. He has a shunt. They just went on vacation...they thought they might never fly on an airplane bc of his shunt...but did. He is a gorgeous example of life and love. Made me think of Nova and your fam today. Love to you guys!!
ashleewellsjaxn : #vpshunt #hydrocephalus #micropreemie #miracle #ttts #twintotwintransfusionsyndrome
fuschiafoot : 18 months already?! Doesn't seem possible. One of my all time favorite pics too.
sara_7x - amosluver - wendybirdunicorn75 - noonieq -
Excuse my horrible handwriting BUT today is the day I get to present my poster on Hydrocephalus for my CNA! I'll be able to educate and spread awareness about Hydrocephalus and share a little bit about Angie and Louis.💜 I love them both! #hydrocephalus #hydrocephalusawareness #teamlouiskeith 💙🐳
angieandlouiskeith : 💙💙💙💙🐳
jucee_mama : My sister has that. 😘💗💋
kenna_kitty : What is hydrocephalus ?
its_bloshee : It's on the poster @kenna_kitty
kenna_kitty : I can't read that.
hayleeandbaby : This is so sweet!(:
cassandgbug : I didn't zoom in very far because I wanted the whole poster in it. Haha @kenna_kitty
kenna_kitty : yeah I was squinting, and vin hid my glasses on me so I ended up just looking it up on google lol @cassandgbug
addyyyhope - bewhoyouare94 - emma_piro15 - natali1128 -
Someone seen #ironman when we were out and since mommy is a push over.... Now he doesn't want help to open it when I tried to help he says "teigan open" so many words :D #cerebralpalsy #hydrobaby #hydrocephalus
rochelle32101 - catsup_ - nbmmgrgh - paulatobe__ -
nicoledynasty86 : #vpshunt #brainsurgery #threetimes #hydrocephalus #epilepsy
shann0n2o14 : 🙏🙏🙏🙏
ibbdaflyest - chrissyandkisses - tinishamashyyy - 1krazyloudchic -
T made bunny ears at school today before they did the egg hunt. I asked him to smile and the stinker stuck out his tongue.lol. #bunnyears #easter2014 #montessori #specialneeds #cerebralpalsy #hydrocephalus #hydrobaby #lovehim #sillyboy #son
specialneeds - montessori - sillyboy - easter2014 - hydrocephalus - son - hydrobaby - lovehim - bunnyears - cerebralpalsy -
nbmmgrgh - kelley_agirlandwhatsheloves - kisrakisra - beachdreamer -
Going through old weight cards... Months and months of blood, sweat, and a few tears. Ready to get strong again. #recovery #shuntlife #hydrowarrior #hydrocephalus
ennairb - gram1590 - amandahesnongalloway - _yksoriday_ -
Hello sailor 💪#sailor #anchor #beautiful #babiesofinstgram #baby #boy #myworld #truelove #handsome #spinabifida #spinabeautiful #hydrocephalus #toughcookie #myall #smiler
beautiful - boy - smiler - instalike - babiesofinstgram - hydrocephalus - instakid - truelove - sailor - shinecharity - myworld - instababies - spinabifida - baby - toughcookie - inlove - spinabeautiful - anchor - myall - handsome -
selinabarnett : #instalike #inlove #instababies #instakid
selinabarnett : #shinecharity
jools99 : He's growing so fast bless him xx
selinabarnett - nova_ali - jackiefleet - treeny1986 -
#inspiring. #Heartmelting. Precious. Priceless. #Beautiful #baby Alyna Marie at her 1st visit to #Disneyland. So incredibly honored and moved to tears to capture this precious #family. Hear their story here: http://ow.ly/vPYBc
beautiful - stupidcancer - inspiring - cancer - family - braintumor - hydrocephalus - disney - anaplasticastrocytoma - disneyland - baby - childhoodcancer - heartmelting -
dparkphoto : #hydrocephalus #cancer #childhoodcancer #disney #braintumor #anaplasticastrocytoma #stupidcancer
mama_christian : Isn't the she most beautiful little girl? I have been following their story on IG for quite a while now. Alyna stole my heart from day one. it's such a small world that you guys documented their first visit to disneyland!!!! Can't wait to see more photos @dparkphoto :)
dparkphoto : @mama_christian she is amazing - I can't stop crying everytime I look at a photo of her. What's IG?
forcewoody : Instagram @dparkphoto
soitscancer - fortaliajoyjustkeepswimming - __lambertxo - ams_cheer_kenzie -
Look at me grow! If you have an interest in spina bifida, be sure to check out my Facebook page 'My Spina Beautiful Life'. It follows my life with sb and my unique experience of also having a brother and sister with spina bifida and hydro. Search 'my spina beautiful life' :)
spinabeautiful - disabilityawareness - spinabifida - disability - hydrocephalus - spinabifidaawareness -
littlemisssarahmaree : #spinabifida #spinabifidaawareness #spinabeautiful #hydrocephalus #disability #disabilityawareness
megahotwatts - fullability - kenziereedsmith - systemsensor1000t -
Feels good to be back with my @courthouseperformance family. #recovery #strong #relentlesspursuit @boo_her
recovery - performancetraining - hydrocephalus - brainsurgery - relentlesspursuit - kettlebell - hydrowarrior - golfgirl - turkishgetup - strong - shunt -
mands_on : @amy_booher rock it sista!!!
amy_booher : #strong #hydrowarrior #hydrocephalus #shunt #brainsurgery #performancetraining #kettlebell #turkishgetup #golfgirl
amy_booher : @mands_on miss you guys... Hopefully we can catch up soon.
mands_on : @amy_booher miss you guys!! Yes we need to please. Told @boo_her that just today. Love you guys xoxoxo
kdub1981 : Turkish getup?
amy_booher : @mands_on ok we'll work on it ♥
amy_booher : @kdub1981 yep :)
ennairb - al_neaimi - mergyexperience - lovenikkole -
Nova's CT showed that most of her sutures are still slightly open. It is good news that we don't have an emergent need for concerns in regard to brain pressure but we still have no explanation on why we haven't seen any head growth or why her head shape continues to change so drastically. We will follow up with our current neuro team in 3 months to check growth and hope that our other opinions are able to leave us with more answers than questions. Such a roller coaster this parenting business. #novagram #blah #micropreemieproblems #ct #hydrocephalus
fuschiafoot : Wish this had been more definitive for you :( glad you have other Drs to see!
alli_tea_veals : 💜
fourplusanangel : Glad you had a little good news but wish it didn't still leave questions. Thinking of you guys. 💕
gcmaw : Wishing you well @ashleewellsjaxn
mothergoose518 : 💖
lolaslostnfound : 🌟❤️
peace_love_coffee : Love, light, hope and good vibes are being sent your way. Nova is mighty, and you all will come out of this stronger. I hope answers come soon, in the meantime we are all here for you guys. Xoxo @ashleewellsjaxn @jeremyejackson
lagau - melissakellas - lilc0417 - briannaj86 -
So, golfing yesterday my poor little scalp got so sunburned... Totally forgot that I have no hair to protect it!! Haha #brainsurgery problems... #shuntlife #hydrocephalus #golfgirl @boo_her
nathaliepesic : Ahhh.. What true passion makes us do!
srainh2o : Oh no!
rainetastic121 : #thestruggleisreal
amy_booher : @nathaliepesic oh yes... This seriously made me laugh this morning. :)
amy_booher : @srainh2o I know, funny, huh??
srainh2o : At least you got outside and got some sun girl! Maybe sunscreen or a hat next time though? :)
amy_booher : @srainh2o yes ma'am ♥
ashley_biggs_ - paulag91 - brooke_hartle - jtthisislife -