#MedicallyFragile
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heatherr411.bsky.social
My son is singing (he is nonverbal) and playing guitar. The house is filled with noise and I love every second of it.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome #Nonverbal
September 2, 2025 at 9:26 PM
heatherr411.bsky.social
My Ethan scoring a goal in floor ball.
Proud of my little man.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome #StrongAndBrave #SpecialOlympics

💪🏻❤️
January 7, 2025 at 9:55 PM
heatherr411.bsky.social
Never gets easier watch my son go through it.

#MedicallyFragile #SpecialNeeds
#FloatingHarborSyndrome
April 25, 2025 at 10:20 PM
heatherr411.bsky.social
Feeling hopeful. 2025 will be the year of no hospitalizations or surgeries for my Ethan. He hasn’t gone one year without surgery/hospital in 19 years. 🙏🏻

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome
November 18, 2024 at 7:27 PM
heatherr411.bsky.social
Well evening plans cancelled. My Ethan’s feeding tube came out. Have to go home to replace it or he needs surgery in an hour.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome
November 25, 2024 at 4:11 AM
heatherr411.bsky.social
Having a child who is
#MedicallyFragile #SpecialNeeds
#FloatingHarborSyndrome means you have many heart aching days with lots of labs. Yet my Ethan still smiles and is happy.
March 12, 2026 at 11:21 PM
heatherr411.bsky.social
It’s 10:20 pm. Everyone is laying in bed. My son decided it’s time to play guitar.

I’m really tired but waiting for him to come in my room so I can tell him what beautiful music he is making.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome
November 17, 2024 at 6:23 AM
heatherr411.bsky.social
My Ethan and I went out for pizza. He had 2 slices. If you or anyone you know has a feeding tube then you know what a big deal this is. If you don’t know, it is a big deal.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome
November 22, 2024 at 10:28 PM
heatherr411.bsky.social
It’s amazing to watch my Ethan interact with others. He is nonverbal but extremely expressive, Ethan is social/interactive/kind/empathetic/friendly/caring/funny.

He seems to touch the heart & soul of everyone he meets.

I admire him.

#MedicallyFragile #SpecialNeeds
#FloatingHarborSyndrome
November 15, 2024 at 6:41 AM
heatherr411.bsky.social
Watching my son #MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome dancing to Cupid Shuffle and
Cha Cha Slide in his special needs social dance class.

Joy x 1,000,000 ☺️
November 22, 2024 at 12:59 AM
heatherr411.bsky.social
So the thing about having a medically fragile child who is recovering from surgery, sepsis, blood infection and is housebound…so is the mom. It’s been just over 2 weeks and likely 1-2 more weeks.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome
February 13, 2026 at 10:03 PM
heatherr411.bsky.social
Doctor appt for my little man, labs, and a breathing treatment is not the way to start a weekend.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome
April 25, 2025 at 7:19 PM
heatherr411.bsky.social
When I gave up my career to care for my #MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome son, I was ok never receiving another promotion, raise, employee of the month, award, bonus again, but not going to/being appreciated at a work holiday lunch/party always bums me out.
December 12, 2024 at 11:01 PM
heatherr411.bsky.social
Look who is featured in the San Diego Sheriff Department news & on the Special Olympics website-my Ethan

This was in 2016 after Ethan had 3 heart surgeries & heart attack that year

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome #SpecialOlympics #SOSoCal #StrongAndBrave
February 26, 2025 at 2:56 AM
heatherr411.bsky.social
Reviewing son’s health/goals. Incredibly proud of all his progress considering we’ve been told on several occasions he won’t live through the night. It is also a heartbreaking reminder of how many challenges he will face for a lifetime

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome
November 18, 2024 at 9:43 PM
heatherr411.bsky.social
It’s been a long week for my little man going in and out of doctors, labs, urgent care, and ER.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome
#StrongAndBrave
September 15, 2025 at 7:45 PM
heatherr411.bsky.social
Well it’s close to midnight
and my son just showed me he pulled out his feeding tube and one toenail.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome
Kristen Bell in Liffey
ALT: Kristen Bell in Liffey
static.klipy.com
May 10, 2026 at 6:27 AM
yokaicafe.bsky.social
#MedicallyFragile #MedicallyVulnerable #ChronicIllness #ProtectOurSeniors
#ProtectOthers #MaskUp #WearAMask #CommunityCare #PublicHealth #FluShot #FluVaccine #FluSeason #MOMsky

*It is NOT too late to get a FLU SHOT! The dominant strain prediction may have been off, but it STILL OFFERS PROTECTION.
December 31, 2025 at 3:01 PM
heatherr411.bsky.social
Having a child who is #MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome who has doctors, surgeons & specialists in just about every medical dept there is, it is exciting to see all the newly #Match2025 doctors & hopefully more become #FHS experts.

Best of luck! Congrats!
March 18, 2025 at 5:25 AM
heatherr411.bsky.social
After 19 1/2 years of care, my son’s pediatrician retired and he was transferred to adult care. Very scary since he has a rare diagnosis, had 24 surgeries/5 heart surgeries/heart attack & many medical complications. I am not ok.

#MedicallyFragile #FloatingHarborSyndrome
June 26, 2025 at 4:45 AM
heatherr411.bsky.social
At an appointment for my son.
First echo and then the cardiologist comes in to read it and examine.
Holding my breath he is not in heart failure. Again.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome #HeartDisease #StrongAndBrave
July 21, 2026 at 5:35 PM
heatherr411.bsky.social
Well it’s hospital life once again. My son made it 3 days into 2026 before being hospitalized. I hoped this would be his first of 20 years of no hospitals or no surgeries but that’s not in the cards for a child who is medically fragile

#MedicallyFragile
#FloatingHarborSyndrome
January 4, 2026 at 3:33 PM
yokaicafe.bsky.social
#MedicallyFragile #MedicallyVulnerable #ChronicIllness #ProtectOurSeniors #GetVaccinated #VaccinationsWork
#FluShot #COVIDbooster #ProtectOthers #CommunityCare
#PublicHealth #MaskUp #WearAMask

📢 "Vibes" about your immune system won't protect you. Get a flu shot!

www.newsweek.com/psychologist...
www.newsweek.com
January 9, 2026 at 2:55 AM
heatherr411.bsky.social
I had a nightmare last night that Ethan fell off a mountain & I couldn’t save him

29 surgeries/5 heart surgeries/heart attack & 20 years of witnessing my son’s medical trauma. I wonder if the nightmares eventually stop

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome
May 5, 2026 at 4:52 AM
heatherr411.bsky.social
This is my day today. It isn’t fair.
#MedicallyFragile #SpecialNeeds
#FloatingHarborSyndrome #FHS #ASL #NonVerbal #CerebralPalsy #StrongAndBrave
April 1, 2025 at 11:13 PM