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.

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

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

a woman in a pink dress is crying ALT: a woman in a pink dress is crying

Ct results shows degenerative discs in his entire spine like that of an elder man.

My Ethan is only 19.

#MedicallyFragile #SpecialNeeds
#FloatingHarborSyndrome

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

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

Many going back to school including my daughter

For my #MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome son who has been ill for weeks and dropped to 62 lbs, health is always the priority

Sad for the experiences he misses but grateful for my miracle being strong & brave

Had a nightmare my son was in the hospital with serious medical issues. I was doing everything to get there but things kept preventing me

I wonder if having a
#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome child means the medical trauma will always result in nightmares

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

Some days when your
#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome child has medical issues whatever errands and “to do” list you have to get done today will just have to wait. His needs come first.

Today is that day.

Never gets easier watch my son go through it.

#MedicallyFragile #SpecialNeeds
#FloatingHarborSyndrome

Doctor appt for my little man, labs, and a breathing treatment is not the way to start a weekend.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome

This is my day today. It isn’t fair.
#MedicallyFragile #SpecialNeeds
#FloatingHarborSyndrome #FHS #ASL #NonVerbal #CerebralPalsy #StrongAndBrave

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!

We show that during neuronal differentiation of N2A, H2A.Z is initially removed but later reincorporated. In SRCAP knockdown cells, this reincorporation is impaired, highlighting SRCAP’s essential role in depositing H2A.Z during neurodevelopment. #SRCAP #Neurodevelopment #FloatingHarborSyndrome

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

I love giraffes so much. Reminds me of my son when he was small. Ethan is #MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome #NonVerbal
Beautiful, strong, mighty, doesn’t make a sound but is so expressive.

My Ethan scoring a goal in floor ball.
Proud of my little man.

#MedicallyFragile #SpecialNeeds #FloatingHarborSyndrome #StrongAndBrave #SpecialOlympics

💪🏻❤️

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.

I’m just reading about #FloatingHarborSyndrome as it’s my 1st time hearing about it. I hope that everything will be ok for Ethan and yourself. Tonight and forward.

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

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

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 ☺️

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

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

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

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