Last day of #Hydrocephalus Awareness Month & Eva's rockin' her #HAWalk to End Hydrocephalus tee (and awesome pair of Minnie Mouse pj pants, not pictured). Even though the month is coming to an end, awareness is still important. Research matters. Many faces. One voice. #HAM2014 #hydrocephalusawareness #vpshunt
mrstricia - natetilly - abbey_18_18 - jessieteal -
Xavier's newest piece of equipment: high flow nasal cannula!!!! #hydrocephalus #teamxavier #sleepapnea #shuntsquitwedont
fishhuntrepeat : quality time!
bunkerbabe73 : ♥♥♥
sierra_1luv : mmm good fingers
fishhuntrepeat - stjulia3 - bunkerbabe73 - hordajarl -
Happy 6 month Shuntoversary to me!! Oh hell, yeah!! It's not easy, but it is so worth it. @boo_her #shuntlife #hydrocephalus #vpshunt #brainsurgery #recovery #nevergiveup #strong #stayheartstrong #relentlesspursuit
shuntlife - love - recovery - nevergiveup - hydrocephalus - brainsurgery - relentlesspursuit - stayheartstrong - vpshunt - strong - relentless -
boo_her : Better than we were before!!!!
hydromomma : 🎉🍸
amy_booher : @boo_her #relentless #love ❤️
amy_booher : @hydromomma thank you!!! 💙💙💙
bigrobss : Congrats, keep it up!
lalalalinds_ - ceecee0820 - el_donaldo - flosswoss -
Another dr appt this morning and poor little fella has to get a shot and blood work done 😢 lots of snuggles today #supercam #camspam #veinofgalen #hydrocephalus #hemiplegic
mombie_melly : Hope today goes smoothly for you guys.! 😊🙏🙏
erica_kristin : He's such a trooper. ❤️
love_kristan : Hi cute stuff!!!! ❤️❤️❤️❤️
27andpregnant - chels3811 - shannylkoch - ohgeeitscg -
nicollemarie90 - kirstymcaldwell - julie.sherman2014 -
I wish I could post a picture of my boobs but I'm sure I would get kicked off Instagram for it. As if losing my baby wasn't enough, to add insult to injury, my milk is coming in. I am SO engorged right now....all the way up to my armpits and it is PAINFUL! Physically and emotionally 😥. Anyone who has breast fed knows how precious it is, and here I am wasting it 😢. My body wants to feed a baby I don't have. I was not prepared for this nor was I warned. 😰 I wish I could just leave the pieces and get over it, but every day, every movement, every lonely moment is a constant reminder of the baby I lost. This is way too much for me....
infantloss - depressed - sadmommy - hydrocephalus - sad - pregnancyloss - 22weeks - ithurtssobad - miserable - engorged - painful -
27andpregnant : @tristansmommy0820 I saw your IG, I'm so sorry momma 😔💙. I'm going to try the cabbage, I think I can sneak some from my work since I work in a restaurant. Cough syrup worked for me, but I'll try that if this doesn't work. It's ok to be sad.💞
27andpregnant : @perfecttt_imperfectionnn I had a choice of induction or D&E. I don't really want to talk about it 😔😥
kazzerness : Sending love, you don't have to explain to anyone ❤️
tristansmommy0820 : Cough syrup? You just took it once a day or how did that work? And thank you
27andpregnant : @tristansmommy0820 yeah like robitussin. I took it twice a day and it dried up in 3 days.
perfecttt_imperfectionnn : What's d&e? @27andpregnant
perfecttt_imperfectionnn : Oh okay, that's understandable
27andpregnant : @perfecttt_imperfectionnn I would google it...😕
nandotirado80 - breeyyonce - fukk_im_suicidal - momtobe21 -
jojofabulouss : 👌👌💙💙
banny62_ - sashaaaaxo_ - arielllle___ - goya_beanss -
Here is the pic of Jojo, the little boy I painted the helmet for. He was so proud of his new helmet he wanted to go to school early and show it off. I hope it brings him greater confidence. #paint #pride #hydrocephalus #hydrocephalusawareness #blessing #miraclekid
janalynnie - kelseacrandall - lifewithlouiebutt - theneonkid -
Life is EverSooLovely When You Have Two Big Sisters By Your Side. #givingmommyabreak #hisothermothers #feelingbetter #hydrocephalus #shuntlife Still playing the waiting game .... Hoping for surgery by the end of the week. #CHOC
carlitarita : I wanna visit again!! #threebigsisters #haha
mahalkitalisette : WHY
ngrabiel : I'm so happy to see Dylan smile
ashkristineb : @mahalkitalisette 😂😂😉
devyne_j : Love that smile...
jasmineejean - rochelletennisstar - jnletua - devyne_j -
My #MCM goes to this lil trooper who I call my brother. 💙 Big thank you to all my family and friends who have been sending their love and support! For those of you who bave been asking, my brother has #hydrocephalus. Something doctors found when he was a baby. What it is, is, cerebrospinal fluid in the ventricles of his brain that weren't draining out into the rest of his body. This is bad because as the fluid accumulates it causes pressure in the skull, which can do serious damage. To treat this they put in a #shunt. Which is pretty much a device implanted in the brain that allows the fluid to drain out of the brain and distribute into the rest of his body to be absorbed. Last Sunday Dylan went in for an emergency surgery because of a disconnection in his vp shunt, only to later find out there was more to his #shuntmalfunction leading to another surgery to replace everything. Unfortunately the new shunt was unsuccessful and blood was found in his brain due to all the pressure from all the buildup of fluids. Currently surgery is postponed until there is no blood found in his brain. So now all we can do is just pray and hope for the best. 🙏
emilnaruto : Prayers from your psuedo ading to you and your family. Hopefully it's answered and the best!
loverbugg : 🙏❤️
juudyxoxo : ♡♡♡♡
izzebrotato : My little cousin suffers from the same condition. Its not easy to deal with at all and its harder to realize that there is no cure and there will always be complications and surgeries . Definitely praying for him.
mahalkitalisette : @vivyannguyen @yaelliemae @aediahhhh @lizettyspaghetti @emilnaruto @juudyxoxo @loverbugg Thank you! Definitely appreciate it!!!
mahalkitalisette : @izzebrotato Oh wow, I'm glad that there's someone who understands! That is so true, we can only just hope for the best! Same goes for your little cousin as well Thanks Izzy!
mahalkitalisette : @darealkay Since you've been checking up on me about my brother, here's a better explanation. Thanks for caring bro
darealkay : Glad he's getting better @mahalkitalisette
charzmand3r - krisbreezy9 - nashtea - aceroses -
My sleeping angel #hydrocephalusawareness #hydrocephalus #septemberhydrocephalusawarenessmonth #hydrowarrior #hydromom
septemberhydrocephalusawarenessmonth - hydrocephalusawareness - hydrowarrior - hydrocephalus - hydromom -
kimdmillerm : Aww such a sweetie😊❤️😊❤️
heidilore76 : Thank you @kimdmillerm ♥
bunkerbabe73 : Please kiss that little face for me♥
naturenurtureheavenandhome : @heidilore76 so precious! ❤
naturenurtureheavenandhome : @heidilore76 And is he snuggling a koala?? 🐨
texasdork - fishhuntrepeat - stjulia3 - junebugsmomma -
September might be coming to an end but Hydrocephalus Awareness needs to continue! #HAM2014 #hydrocephalus #curehydrocephalus #spreadtheword
pink_flowers22 : I agree! @ha_walk_charlotte
angelicatutton - hendricklexuscharlotte - melinda2235 - leopie96 -
#janaeveryday2014 Day 272: No MRI today. We come back in two weeks for the original MRI date. She's measuring/plotting okay, so it was a 3.5 hour trip for a two minute visit. Hey, that's a win in our books and a great way to wrap up #hydrocephalusawareness month. Continued prayers are always appreciated because this is something we'll be watching closely for months...and well, always monitoring. Our sweet girl has been all smiles per usual. #goodnesswearelucky #seerylengrow #fivemonthsold #hydrocephalus #happybaby #happymama
fivemonthsold - goodnesswearelucky - happymama - hydrocephalus - seerylengrow - janaeveryday2014 - hydrocephalusawareness - happybaby -
julieglynn85 : Sweet pic of you two
lifewithlouiebutt : My Louis has hydro. It's always nice to meet another hydro momma 💙
janalynnie : I agree, @lifewithlouiebutt ! I'm not sure if you like me, but I had never heard of this condition until Rylen was diagnosed. Now, I feel like I know a community of people who are affected or know someone affected with hydro.
lifewithlouiebutt : Same here. I was only 17 and junior in high school when he was diagnosed at 2 weeks old. Him only being 2lbs we didn't see the effects of hydro until he was 4 months old. Now I feel I hear about it all the time and know exactly what I'm talking about when people ask questions.
janalynnie : To be so young, you sound like you have been such a brave and good mama to him. Rylen was diagnosed at 2 months old. She had no symptoms other than the rate of her head growth. So far, it hasn't bothered her a bit. I hope it continues to be that way!
janalynnie : @lifewithlouiebutt Forgot to tag you to my response.
lifewithlouiebutt : Is she shunted? Louis got his VP Shunt when he was 6 months old 😊
janalynnie : No, she isn't shunted @lifewithlouiebutt . She had the ETV/CPC procedure. It's 50/50 at this point whether that procedure will be long-term or whether she'll need a shunt. I'm really hoping for no shunting, but as long as there's a way to help her, I am all for it.
sonyasledge - kblank7 - jlpayne2s - christianmnb -
I had the opportunity to #paint this #helmet for a little boy, Josiah, who was born with #hydrocephalus. He is truly an #inspiration! He was born with 5% of his brain, his adoptive parents got him at ten days old and were told he wouldn't survive, and would never go beyond a vegetative state. Guess what? He is 18 months old and he walks! And smiles! He is amazing! I am so happy I got to do this for him. #hydrocephalusawareness #miraclekid #jojo #adopt #love #luck #believer #art
jojo - helmet - love - miraclekid - adopt - hydrocephalus - believer - paint - hydrocephalusawareness - art - luck - inspiration -
katmillicent : Correction: he is three! Not 18 months. That's what I get for trying to post this in a hurry. He has an 18 month old brother.
kaylsswoods : Sounds Alot like my little boy we were told he wouldn't survive and if he did wouldn't be much of.a life, he's currently in mainstream school walking talking he's amazing these kids are truly inspiration xx
katmillicent : @kaylsswoods that's so awesome!! I am happy to hear your boy is kicking butt at life. I am amazed by Jojo and kids like him. They are miracles.
houmaxo - m2rhelmets - rayna_switchblade - davoudpinskyde -
Cameron had his 2 week post op check up today and it went great! We got to see his scans and it looks like he will only be needing 1 or 2 more surgeries!! Once Cameron's groin is completely healed we will set the next surgery date. Happy Monday everyone! #supercam #camspam #veinofgalen #hydrocephalus #hemiplegic #miraclebaby #raiseawareness #mcm
mcm - miraclebaby - hemiplegic - hydrocephalus - supercam - veinofgalen - raiseawareness - camspam -
cdnelson07 : Yay!!! Great news
megpiiie : 👏 yay! Keep it up super Cam! ❤️😘
taira211 : YAYAYAYAYAYAYAYAY @ktpie4141 soo exciting!! That's AWESOME,AMAZING and EXCITING! Love you guys to pieces! So glad Cam is doing great! 😘😍🙏
kelseyauri : Wonderful news ☺️ thank God for his grace, & healing hands.
obsessivemomma : How exciting!!!!! I am so super happy to hear this! #supercam
loveugod_bless4life : @ktpie4141 kingjesus.org... Bring the baby... God Can heal him...
alove1243 : 🙏👏😍 great news so happy to hear it
shannylkoch : 🙌🙌🙌 Great news!!!
ali4x - brittaniemarie__ - hucklett - _sierraparks_ -
by_stjernedrys : #hydrocephalus #hydrocephalusawarenessmonth #Laura #dandywalkersyndrom #teenager
susannerisgaard : Godt billede. ❤️❤️❤️
pernillesmile : Det kan jeg godt forstå I skal, hun ser da så skøn og glad ud på billedet - søde Laura💗
271182 : Dejligt billed
by_stjernedrys : Tusinde tak @susannerisgaard ♡♡♡♡
by_stjernedrys : Tusinde tak sødeste @pernillesmile ♡♡♡♡ Det er nemlig rigtig godt. De har heldigvis skiftet firma. Det forrige var piv ringe.
by_stjernedrys : @271182 ♡♡♡
maanni77 : Det er da også et dejligt billede af hende. 😊 dejligt med fotografer der kan fange dem. Det er bare ikke alle der kan.
heidiaasted - petrinelundstein - agnete_p - ivaerksaettermor -
alopez1217 - thefrontportch - martinalittleelli - nadianyc4 -
If you have any good in your heart, then you'll feel compelled to help find a cure for this amazing little fishing buddy's rare condition... See details above 🎣💗☺️ #mcm #TeamDylan #hydrocephalus #treasurecoasttackle
bregonefishin : @iitsjouppii and @tctmama my pleasure!!☺️💕
treasurecoasttackle : @bregonefishin Awesome! Thank you!
t_meche17 : This lil dudes my favorite
joupdog : #littlejoupdog
bregonefishin : @treasurecoasttackle @joupdog no problem!! He's awesome 😊
local_tails : This is awesome! 🙏
melissness : What's the Facebook??
treasurecoasttackle : @melissness if you type "recipes for research" in the search it should take you to the Team Dylan fundraiser event
oonkc19 - neilseales - fishtaco51 - mako_boats -
hydromomma : #mommyandme
betplusthree - thefrontportch - stonyduck - lly712 -
#hydrocephalusawareness 💙 Raya was born with severe congenital #hydrocephalus as a result of aqueductal stenosis. From it, she has acquired #epilepsy #corticalblindness and #developmentdelay . She's had brainsurgery 4 times, countless outpatients appointments, countless emergency admissions to hospital, she has Physio, OT, specialist equipment, daily medication and still, she smiles and makes my whole world a better place 💗 yes it's hard work, it's heartbreaking some times but I wouldn't change a thing. I'm a better, stronger person from all of it and my daughter will live a fulfilling life and inspire and make people happy just like she does for me 💕
danniikemp : She's a beautiful miracle ❤️
dmcsaf : Well said momma! Hugs from afar xxxx
dmcsaf - christinablairox - aitanabanana - zoeemmacook -
Before September ends let me get in a lil bit more #chiariawarness ! This is my MRI that reviled all. My brain falling out of my head (where the mouse arrow is) and the #syrinx (the white splotch in my spinal cord there) 1 in 1000 are effected by #chiari approx 1 million people have #hydrocephalus to learn more visit: #conquerchiari http://www.conquerchiari.org/index.html
mjjdnani0307 - melodykoalabear - beyonce_brian - sea_and_ice -
#charlotteadielle #killingit #bohochic #dandywalker #hydrocephalus #hydrowarrior #hydrocephalusawareness
dandywalker - hydrocephalusawareness - bohochic - hydrowarrior - charlotteadielle - hydrocephalus - killingit -
annadparker : Oh geez. Presh!!!!!!
katgarner62 : Are you kidding me?! I can't take it! She's so adorable 😍
luflicesh : Omg. Stop it!
mal_weeks : I wish I was there to meet her. 😍😍
ascotter569 : She totally killed it!
ktpie4141 - mama2t - alisonhawkyard - mamatoavery -
There's so many amazing new styles and prints!! Help me raise funds for the PHF!! Our daughter suffers from severe hydrocephalus. Her safety and our lives could change in an instant. God has blessed us in so many ways as she was not expected to have a very good quality of life and yet she's doing wonderfully! Help us find a cure! Help give families like us hope that someday we no longer have to stress about brain surgery. We no longer have to analyze everything our child does to make sure there's no change that could be linked to a shunt malfunction. Help our family and all the other Hydro families have the ability to freely enjoy every moment together without fear. To place an order go to www.mythirtyone.com/megelmore go to my scheduled parties and shop now next to the PHF Fundraiser. Be a part of something big! Be a part of the cure! #hydrocephalus #pediatrichydrocephalusfoundation #hydroawareness #thirtyone #thirtyonegifts #mommy #christmascraziness #chevron
thirtyone - mommy - hydrocephalus - thirtyonegifts - chevron - christmascraziness - pediatrichydrocephalusfoundation - hydroawareness -
by_stjernedrys - elizabeth_frei - hackler.theresa - gabe_themacboy -
I will be participating in the Ronald McDonald Red Shoe Walk on October 25th and I need your help! I'm making wreaths and donation the profits to the Ronald McDonald House. Oct. 26th will make one year since Ava initially went into the hospital and after spending a few months away from home, our family utilized the services of the RMH! So here is my opportunity to pay is forward and give back where I can. I will customize your order, just send me your email address for more information. Even if you are not interested in buying a wreath you are still welcome to donate to me, your local Ronald McDonald charity, or donate items to your local children's hospital. You don't know much these families appreciate your acts of kindness!
forsale - ronaldmcdonaldhouse - meshwreaths - hydrocephalus - dandywalker - donate - sc - charleston - specialneedskids - charity -
mrs__dsw : #meshwreaths #charity #forsale #donate #ronaldmcdonaldhouse #specialneedskids #charleston #sc #dandywalker #hydrocephalus
tiaraaa___ : Demetria, I'll definitely support!!! My email is: firstname.lastname@example.org
mrs__dsw : @tiaraaa___ thank you for your support. I will email you.
mrs__dsw : @tiaraaa___ did you get my email?
ilove2bpampered - mrz_alexxx5 - ingrid_marcela - sdotash -
This is an actual xray of me. You can see an old cacified shunt that has a new one running over it. This is a very painful thing. Something many people with #hydrocephalus experience. We need better treatment options friends. Doctors are not usually able to remove the old ones. So please make a donation to the #hydrocephalusassociation #hydrowarrior #shuntlife
mrs__dsw : Wow. This is interesting to know. I never knew that this was an issue with shunts. My daughter (age 5) has a shunt and has had 3 revisions already.
btrain3305 : And that's why social networking is amazing. This is not a fun thing to deal with and hopefully she never has to. But when they look at her shunt yearly or however often she has checkups, be sure to ask if they see any signs of calcification. Hopefully they can fix it. @mrs__dsw
jackie_silance : Wow! Same thing happened to me but it wasn't my shunt it was the vp valve that had calcified! I now have a programmable valve
btrain3305 : Ah well in your case be happy it happened. That programmable valve can save you many headaches (pun intended). The old stuff has to be operated on when the pressure setting needs changed and that's no fun! Best of luck to you! @jackie_silance
amy_booher - sdawnn10 - allgravybaby13 - jackie_silance -
My routine twice a day now... Ice on my head and lower back for spinal headaches- it's really the only thing that helps. Now if the 49ers could pull off this win (for Erika's birthday!!) I would be really happy. Come on guys. #hydrocephalus #shuntlife #staythecourse #struggle #vpshunt #nevergiveup #stayheartstrong #relentlesspursuit
nevergiveup - hydrocephalus - relentlesspursuit - shuntlife - struggle - vpshunt - staythecourse - stayheartstrong -
junebugsmomma : Hate to see this. I hope things get better for you soon.
dmcsaf : Thinking of you @amy_booher 《hugs》
amy_booher : @jfray5 an anti siphoning device... The type of shunt I have (Codman Hakim) is supposed to have that feature built in... I've never had the extra one... Usually I'm under drained not over drained... My NS warned us last week that this might be a long and complicated journey, recovering from the inflammation from the meningitis- so hopefully he can get me back... It's a good thing I trust him!
amy_booher : @junebugsmomma @dmcsaf thanks girls 💙
pdxhollym : Warm thoughts for you, @amy_booher.
caitlinstewart1989 : @amy_booher I started the over draining fluctuation thing a while ago and one thing that I was told by the NS was caffeine can help with over drainage headaches. Not sure the science behind it but strong coffee and diet coke (as diet coke has more caffeine in it than other coke). Hope that it helps :)
amy_booher : @pdxhollym 💗
amy_booher : @caitlinstewart1989 caffeine is definitely my friend 😍 It's a good thing I live in the Pacific Northwest, where we are coffee obsessed!!! ❤️❤️❤️
dmcsaf - gbelts - wanda2312 - makenna_tingle99 -
Don't know if Rosie was going in 4 a kiss or going into take a bite out of jts HUGE sandwich lol #rosie #rosiegirl #jt #johnthomas #kisses #sandwich #mybabies #pitbulls #pitbullsandkids #kidsandpit #epilepsy #endbsl #judgethedeed #notthebreed #adorable #dogs #dogsofinstagram #famjam #myfamily #hydrocephalusawareness #hydrocephalus
famjam - rosie - dogsofinstagram - jt - epilepsy - kisses - myfamily - kidsandpit - sandwich - rosiegirl - judgethedeed - pitbullsandkids - johnthomas - pitbulls - hydrocephalus - hydrocephalusawareness - endbsl - mybabies - adorable - dogs - notthebreed -
swagmom25 : ❤️❤️❤️❤️❤️hello sunshine
apbtlover1 - sullimangalaxy2 - counting_spoons - anjeleyez09 -
#janaeveryday2014 Day 271: To our neurosurgeon we go. But first...let's stay the night with PawPaw. Our pediatrician is concerned that her head growth is not tapering off. We had an MRI scheduled for Oct. 13th, but we were able to move it up to tomorrow. Lets hope and pray those ventricles aren't enlarged, everything is looking good, and that her head just grows slightly faster than normal. #seerylengrow #fivemonthsold #22weeksold #hydrocephalusawareness #hydrocephalus On another note, apparently holding the paci and sucking on the paci has the same effect. This girl was out 20 minutes into our drive.
janaeveryday2014 - seerylengrow - 22weeksold - fivemonthsold - hydrocephalus - hydrocephalusawareness -
ktpie4141 : Praying for you guys!
janalynnie : Thanks, @ktpie4141 !
junebugsmomma : Prayers for you both.
janalynnie : We appreciate it, @junebugsmomma !
angelapayne18 : Prayers! She's precious!!!
melaniesmith4556 : Prayers to your precious adorable baby girl!! @janalynnie
megan_myatt - asheets88 - erinashley11 - kpgriffith1 -
My friend posted this #quote for Jordan for his #birthday. I love its #message. How fitting its from Michael Jordan. #Jordan #nevergiveup #hope #believe #relentlesspursuit #hydrocephalus #hydrowarriors #hydrostrong
quote - hydrocephalus - relentlesspursuit - hydrostrong - birthday - jordan - hydrowarriors - nevergiveup - message - believe - hope -
fitmom90 : @dmcsaf great quote!
fitmom90 - fatumaxo - nevuuh - hankevans -
Had a #family day at the #hospital yesterday to visit Aaron. He has had many days of negative infection cultures finally.. Which means they can finally schedule his #shunt #surgery. His blood count was a little low so he got a blood transfusion too. We are all thinking #positive for continued progress with his #recovery. He could be #discharged within 2 weeks!! #chiari #chiaridecompression #chiarimalformation #hydrocephalus #penn state pennstatemiltonhershey #Hershey #hersheypa #love #patient #operation #goodthoughts
patient - family - hershey - goodthoughts - chiarimalformation - love - surgery - operation - discharged - recovery - chiari - shunt - positive - hospital - hydrocephalus - chiaridecompression - hersheypa - penn -
skifflife : Outstanding!
niikkaayy - shad711 - jeff.kase - brittanyann126 -
Will and his pumpkin #pumpkin #halloween #hydrocephalus #hydromom #hydrowarrior #septemberhydrocephalusawarenessmonth
hydrowarrior - hydromom - septemberhydrocephalusawarenessmonth - halloween - hydrocephalus - pumpkin -
sierra_1luv : oooo hi Will These are the Best times when they are small Have fun!
rjcruz1970 - fishhuntrepeat - top_ace - fluffybuttacres -
HAPPY 2ND BIRTHDAY JORDAN! Love this #shirt. It was too #warm to wear to his #party, but it was nice out to wear to #church and around house. I love that its the colors of the #hydrocephalus ribbon too! Found it at #Meijer. Jordan is such a #mover these days, it was hard to get a good shot!
clouds_85 : Happy birthday Jordan!!!!!
jstein0109 : Happy birthday Jordon! 💙
jstein0109 : Jordan*
dmcsaf : Thank you @clouds_85 and @jstein0109
its_swaggin32 - i_mattvarney - allisonrulz - thekat5150 -