#hydrowarrior

[bashs-mom-jessie]

I adore my children. Absolutely they are the loves of my life.

But raising them in this climate is so incredible difficult and fraught with worry. Daily I’m reading Facebook posts by other trach parents about their vents being pulled from their homes because of the vent shortage. I’m reading posts about supply shortages. I’m trying to arrange virtual doctors visits because we can’t risk going to the hospital. I’m doing therapy appointments virtually because I can’t risk occupation and speech and physical therapy coming into our home and potentially bring ANY sort of sickness with them. For our family it’s not just about avoiding covid, it’s about avoiding ANYTHING that could land us in the hospital.

We usually have in home nursing to help keep everything under control. We don’t right now. It’s extremely difficult. I feel like I’m pushing past my limits and it’s like a runaway train. If I don’t get a handle on it soon I’m going to crash. I’m exhausted as it is. This situation is overwhelming.

On top of all of this, I’m having to navigate the insurance system. My husband is separating from his job and while cobra is an option there’s a lot of balls in the air that have to be juggled to sort out our insurance situation. Bash qualifies for Medicaid which he has, but it’s secondary to our private insurance through Scott’s job. All our pre authorizations for bash’s brain aneurism treatments are already set up through that insurance plan. All our doctors and therapists are set up. And our deductible will reset. We already paid it once this year. It’s 8000 dollars.

If we put Bash on Medicaid alone he can’t get his surgeries in New York and the doctor there is the very best. But if we keep him on our current insurance plan through cobra we could lose our respiratory equipment supplier. They own bash’s vent. I can’t imagine trying to switch companies in the middle of a vent and supply shortage. I don’t even know how to navigate this.

Our other option is to get a new private insurance plan for our family. It’s cheaper than cobra but again our deducatble will reset and to go this route I have to find out what insurance company 1) has a plan we can afford 2) is in network with children’s hospital and our other doctors 3) would allow us to travel for specialists 4) is in network with mount Sinai in NYC and 5) what their procedure is for getting the doctors in New York who are not in network with anyone, to be covered as in network so that we don’t end up with millions in medical debt.

To top it all off, my grandpa has covid and is dying. I can’t even risk going to see him. He’s been my rock since my dad passed. The grief is crushing.

Auggie seems to know something is upsetting me because he is having severe separation anxiety this week.

I feel like I’m carrying the weight of the world this week.

[vampirecrushh]

alesana and I this morning ^-^

[kleia-ink]

Hydrocephalus makes me feel like I'm drowning

KLEIO

[centurymanoffdarails]

Fun solo ride today around central Iowa. This was day four of four for me this week and I decided to route scout for route with my friend when we ride again. 29+ miles of central Iowa trails. #hightrestletrail and #neilsmithtrail and FINALLY a dry ride in my #hydrocephalusawareness #hydrowarrior jersey! #praypedalrepeat #ridingwithhydrocephalus (at Big Creek Lake) https://www.instagram.com/p/CAeQw2lAqAx/?igshid=1cv79rb3ubg7b

[crystynebatz]

Id llike to do a birthday fundraiser for the pediatrician hydrocephalus awareness.

I am a mother of a strong hydrowarrior.

I was not expecting to have my daugher prematurely let alone her having a rare brain disease. Thankful it was caught early and she shunted by a very wonderful neosurgen at Vanderbilt.

If you have any money or change you could spare this holiday season donate to help families with hydrowarrior that are still going throw an up hill battle everyday to live. This is a life threatening disease and many like myself have no idea about it until it happens.

Help raise awareness. Help the families. Save a life. 💙

[bashs-mom-jessie]

@taylorswift @taylornation @jessietheswiftie

It’s okay if all you did today was breath.

#BeLikeMeredith She’s out here teaching life lessons

@taylorswift @taylornation

[brandonimhotep]

Mother + Son = #photoshoot 💛 Happy Spina Bifida Awareness Month🎗 👑📸 @ladybmarcelle #spinabeautiful #spinabifidafighter #spinabifidaawareness #spinabifida #hydrowarrior #hydrocephalusawareness #childrenwithdisabilities #spinabifidaadvocate https://www.instagram.com/p/B3Pfx87gLdU/?igshid=s46ailcdhw0s

[thepawproject]

#Repost @tater_gonna_tate This is how you catch a mousie. These are important things to know, so don’t forget. #scoopadoop #polydactylcat #pawsneedclaws #pawproject #specialneedscat #hydrowarrior https://www.instagram.com/p/BwfGeQYhe4w/?utm_source=ig_tumblr_share&igshid=1kltfbnqeu7le

[myatlantamomsclub-blog]

I know they're out there but I haven't found many SB kids who hasn't had a surgery to correct their hydro. My girl actually had a surgery called Endoscopic Third Ventriculostomy/Choroid Plexus Cauterization (ETV/CPC). That's a whole lot of letters! ETV/CPC surgery has about a 50/50 chance of success. Our neurosurgeon said we would know within the first 4-6 weeks of it was successful. We met with her neurosurgeon in his office for a follow up to her back surgery and to check her head for the hydro. He said we needed to take some action as the fluid was building not draining as it should. He suggested we go the ETV/CPC route. Not all SB babies have this option. You have to be the perfect candidate. The right age. The right amount of fluid etc. We had grown to trust this person with our daughter so we decided on the ETV/CPC. Our girl had her surgery nearly a month to the day after she was born. We haven't had any scares or problems since!!! It's been over a year!! We're so excited and blessed we were given this opportunity. So thankful it's been successful! Here's to more successful years in the future! These kids are strong! Never doubt that. By: @susanpmc . . . . . #MAMC #myatlantamomsclub #atlanta #georgiamoms #momlife #realmomlife #ReaganFaith #spinastrong #spinabeautiful #spinabifida #spinabifidaawareness #october #sb #specialneeds #specialneedsmom #specialneedskids #spinabifidawarrior #hydrowarrior #hydroprincess #hydrocephalus

[bashs-mom-jessie]

My life is basically my kids (bash the brave and Auggie the awesome) and Taylor swift.

It’s not that I don’t have more in my life, more interests, more pursuits, just more. But my main focus, what I put all of my energy towards, is saving Bash. Getting Bash from here to healthy. And happy throughout the journey. And my break, the happiness I have outside of Bash, the topic that helps me cope, is Taylor swift. I’ve been listening to “soon you’ll get better” a lot lately. It’s such a hauntingly beautiful song. And I understand the sentiment all too well. Because Bash, my baby, my 1, almost 2 year old, is sick. He has so many health problems and it affects our family every single day in every single way. He has 27 doctors, 3 medical equipment companies, 3 pharmacies, 3 hospitals in 3 cities in 2 states (Colorado Springs, Denver and New York) and 6 therapists. My life revolves around being a stay at home mom to my crazy toddler boy, and my developmental delayed, extremely medical complex other toddler boy. It’s a lot. It’s overwhelming. And when I need something to help me cope, often it’s blasting my happy Taylor list, songs that make me wanna dance like shake it off, look what you made me do, state of grace, and so on. But someday Bash WILL get better and this will have just been a little piece of our journey.

[sushrutbrainandspine]

Cerebrospinal fluid normally flows through the ventricles and bathes the brain and spinal column.

Hydrocephalus - The excess fluid increases the size of the ventricles and puts pressure on the brain. Cerebrospinal fluid normally flows through the ventricles and bathes the brain and spinal column.#hydrocephalus #spinabifida #hydrocephalusawareness #cerebralpalsy #hydrowarrior #hydrocephaluswarrior #specialneeds #spinabifidastrong #spinabifidaawareness #spinabeautiful #prematurebaby

[kleia-ink]

My thoughts are like hurricanes. I can't stop overthinking

KLEIO

[shanaesqueakymonroe]

#STILLSAMEOLG STILL SAME HASHTAG #NOMOREBS STILL SAME #BLESSINGS SAME JOURNEY NEW LESSONS ME IN #2009 after my first #BrainSURGERY AND 10 years later after my 2nd brain surgery #2019 #stillSTANDING #SQUEAKYMONROE MY CONDITION NEVER DEFINED ME DONT LET IT DEFINE YOU #NOEXCUSES DONT ASK ⚠️ DONT QUESTION GOD 🚫IVE BEEN THROUGH MOST PEOPLE SAY THEY CANT SEEN AND STILL SEEING THE UNSEEABLE INVISIBLE 👁I ASK GOD FOR PATIENCE PEACE LOVE CALMNESS PPL PUSH ME AND DONT CARE THEY PICK AND WANT TO COUNT ME OUT BECAUSE OF MY #DISABILITY 🆗✍🏽 I AM JUST #THANKFUL #HUMBLE BECAUSE I KNOW GOD SEES ALL😉☺️YOUR SPIRIT WILL NEVER REST PLAYING WITH GODS DAUGHTER I AM THAT I AM I TOLD YOU DONT PLAY WITH ME FOR A REASON I GIVE FAIR WARNING I TREAT ALL FAIRLY YOU DONT LIKE IT STAY FAR AWAY FROM ME PERIOD🌪🌟💫☄️PPL TEND TO JUDGE- I DONT💨 PPL LIKE TO USE ME- I DONT USE PPL- PPL LIKE TO TAKE ME FOR GRANTED I CHERISH EVERY MOMENT- PPL TAKE LIFE FOR GRANTED- I DIED MORE THAN ENOUGH TIMES TO KNOW... #HNY #QGTM #EminenceNYC #VdotIsHOT #PowerisIndustry #NYC #BlazeTHEMIC #LINKINBIO #RESPECTDAGRIND #hot97 #Power105 #ShininStarsENT #KEEPOFFTHEGARDEN #DzynINDIEFILMS #DTFRADIO #NOTORIOUSS #BK #mediamogul #womeninbiz #indieArtist #independent #womenempowerment #BIGQUEENS #BLAKOWN #SUMTHINSERIOUS #MENTALHEALTH #AWARENESS #DVSURVIVOR #CANCERFREE #FEMALEDJ #INDIE #top100 #LEGACY #epilepsyawareness #HYDROCEPHALUS #WARRIOR #hydrowarrior 👑🎗🙏🏽💪🏽💙⚡️🔥⛈☔️ (at Hollis, New York) https://www.instagram.com/p/Bsl9MZ8lvafIjwLoQ-nX3_vndq0DBLixU4ZOQA0/?utm_source=ig_tumblr_share&igshid=940a6yhkls23

[centurymanoffdarails]

If you would’ve told me four or five years ago I would get to ride on both coasts of the USA and get to have ridden in 8 or nine states I would’ve said you’re crazy! Well we all know #howgodrolls. This ride was a dream for me a couple years back when announced. Then I met a couple #hydrowarriors in Washington state on Facebook and I knew I had to be there! Can not wait for this ride to happen! #praypedalrepeat #ridingwithhydrocephalus (at Kyle's Bikes) https://www.instagram.com/p/COgDy5EDT96/?igshid=wpys58i0vtgn

[yojzky]

I am a pencil in God's hand 🙏🥺 Sa panahon sin pangangaipo,minsan masasabi mo na an kwrta,nahahanap ,pero an pagbulig sa kapwa,warang kaligayahan na makabalos.Sana makabulig man po ini saiyo. Nakaistar ang family sin baby nya my hyrocephalus sa irarom san tulay. Goodluck baby hydrowarrior sa removal of stitches mo sa aga. https://www.instagram.com/p/CPfWO-kJMhjeelzWAWMS1D3qaewGyvJqk2W3Es0/?utm_medium=tumblr

[lykkirykki]

Even if that shunt decides to shut down