Kyra

hydranencephaly hashtag performance

#Hydranencephaly highlights a rare neurological condition where major parts of the brain are absent. It fosters community support, awareness, education, empathy, and shared experiences among affected families and advocates.
Just know I absolutely cannot sing but Creed enjoys when I sing to him 😂🤣 #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong
That nurse has been here for 12 hours multiple days in a row. They know my son far better than the specialists who’s seen him for 5 mins a few times. I’ll absolutely go feral. This doesn’t go for all Drs obviously. Some are amazing ❤️ #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong #momtok #momthings #bpd #borderlinepersonalitydisorder #nursing
Long days for our not so little man ❤️🐝 #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong #momtok
Middle Class problems 🤣😂 #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #hydranencephaly #CreedStrong
#childloss #childlossawareness #infantloss #infantlossawareness #hydranencephaly #raredisorder #neurologicaldisorder #nicu
I guess I’m starting a new series on the struggles of raising a disabled child in the US. Our income disqualified us from disability, regular Medicaid, most assistance programs, etc…..so we have to pay out of pocket. Which we can’t afford to do either. So we find ways around the struggles. Regardless on how much you make, unless you’re a millionaire, you cannot afford to raise a child like this without some help. His meds alone total about $20,000 a month. His last hospital stay was almost 1 million, not including the 5 surgeries. The government doesn’t take any of that in to account with assistance programs. My husband works 70-80 hours a week and makes fairly good money, but it’s not enough when you have a medically fragile child. I have my CNA license but I can’t work since we don’t have full time nursing coverage. So I stay home and take care of Creed and the other kids. Texas will not pay parents to be caregivers. Moving to a different state wouldn’t be feesible either. #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong #bluecollarfamily #middleclass
We always manage ❤️ #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong #nurseshortage #exhausted
Happy new year 💜 2024 was a rough one, but we made it and we got another new year with our babies and each other. I couldn’t ask for anything more 🥹💜 did we pop confetti and get it everywhere?! Did I spend 30 minutes blowing up balloons to make a balloon drop for the babies?! The answer is yes. We always celebrate holidays big because it’s one more holiday they said he’d never see 💜 now we’re gonna all walk in to 2025 very quietly and don’t touch nothing okay? Thanks for your cooperation 😂🤣 #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong #happynewyear #2025@cornbread_tx
Thanks for coming to my Ted talk ❤️ #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong #momtok #momthings #bpd #borderlinepersonalitydisorder #trauma #nursing #nurseshortage #grief #CPTSD
#greenscreen super confused when people thank me for taking care of my child 😂🤣🐝 #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong #momtok
If you don’t laugh you’ll cry 😂❤️ #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong
#MomsofTikTok #momthings #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong #obgyn #gynecology #laboranddelivery #nurse #doctor #maternalfetalmedicine
Basement membrane explanation. #MomsofTikTok #momthings #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong
Creed’s medical binder. It makes everyone’s life easier ❤️ #tinywarriormamas #hydrocephalus #GouldSyndrome #COL4A1 #geneticmutation #terminallyill #hydranencephaly #CreedStrong #momtok

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