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#Medicallycomplex Reel by @raising.remi.on.o2 - She looked fine - until we finally saw the numbers. From the outside, it was easy for people to assume she was okay. But feeding was a battle… and he
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@raising.remi.on.o2
She looked fine — until we finally saw the numbers. From the outside, it was easy for people to assume she was okay. But feeding was a battle… and her breathing didn’t feel right. Then the monitor showed what we couldn’t ignore: her oxygen was low. That was our first real clue. And it changed everything. If you’ve ever felt that gut-drop moment where you know something isn’t right… you’re not alone 🤍 Follow Remi’s Journey 🌈 #medicallycomplex #medicalmom #oxygenbaby #feedingaversion #specialneedsparenting
#Medicallycomplex Reel by @lumieheart - Reminder that some of us ARE too disabled for school or work and that's okay. We are still worthy human beings because we exist. Denying it doesn't me
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@lumieheart
Reminder that some of us ARE too disabled for school or work and that’s okay. We are still worthy human beings because we exist. Denying it doesn’t mean it won’t happen to you 😞 #disabled #chronicallyill #chronicpain #raredisease #medicallycomplex
#Medicallycomplex Reel by @kirstinczernek (verified account) - When we felt led to adopt a child with Down syndrome, I had no idea where to start, I literally started googling. This was unfamiliar territory for me
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@kirstinczernek
When we felt led to adopt a child with Down syndrome, I had no idea where to start, I literally started googling. This was unfamiliar territory for me because Mia and Kai’s adoption was through foster care so the process is different. When googling, I came across the National Down syndrome Adoption Network. It’s a network across the United States that works with all adoption agencies to match parents who have decided to place their child with Down syndrome up for adoption with parents wanting to adopt a child with Down syndrome. They function as the middle man. I got in touch with them and started their process to get registered and on their waiting list. We worked with a local adoption agency, did our home study, all the paperwork, and screenings, and were placed on the waitlist. We had no specific timeline, we planned to just live our life and when we got matched would pivot but there was no telling how long that would be. The parents of the child get to choose and some people wait for a month and some a few years. In August 2023, someone from our instagram community reached out and said they knew of a baby boy that was going to be born with Down syndrome and mom was looking for a family. She had been connected with mom’s adoption attorney and wanted to know if we would like the info. In that moment, reading about the situation, I just knew this was it. We actually got two calls about potential placements the following two weeks but just felt this sweet baby boy was ours. We got connected with the adoption attorney, then connected with mom and it all seem to really fall into place. About a month later, we went to Alabama to be there for Luca’s birth. We had no idea how much our lives would change in that moment, but I would do it 100 times over to get our sweet boy. Luca is filled with so much love, my heart absolutely melts just thinking about it. I’m so proud of my sweet boy. How far he has come, how he has fought to be here, and for just being him. I love my Luca so much, I can’t believe our adventure together is just beginning 🥹🤍 #downsyndrome #trisomy21 #medicallycomplex #momlife #reels
#Medicallycomplex Reel by @littlelobbyists (verified account) - For medically complex children, #HepatitisB isn't theoretical - it can mean irreversible liver damage, lost care, or worse. And yet, protections backe
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@littlelobbyists
For medically complex children, #HepatitisB isn’t theoretical — it can mean irreversible liver damage, lost care, or worse. And yet, protections backed by decades of science are being rolled back. Children who rely on life-sustaining medical care cannot afford preventable infections. They deserve evidence-based policy and basic protection — not political experiments. 🔁 Share if you believe children’s health should never be negotiable. #Medicaid #PublicHealth #MedicallyComplex #VaccinesWork
#Medicallycomplex Reel by @stephaniebluebirds - Do ALL kids with disabilities need ongoing therapy? Not necessarily! But if my child will benefit from ongoing skill-building and/or maintenance of st
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@stephaniebluebirds
Do ALL kids with disabilities need ongoing therapy? Not necessarily! But if my child will benefit from ongoing skill-building and/or maintenance of strength or skills, why would we stop?! We are the therapy clinic “regulars,” the “frequent flyers,” and maybe even the “lifers” over here - and there’s nothing wrong with that if it’s what my child needs to reach her fullest potential! ✨💪🤩💛 I’m so thankful to have found therapists that see my daughter for who she is, believe in her potential, and understand the ongoing value of working with her. 🤟
#Medicallycomplex Reel by @raisingvalentines - 17 months it took them to tell me she actually was drowning in her own blood and can't breathe well because of it. I even got a second opinion at Bost
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@raisingvalentines
17 months it took them to tell me she actually was drowning in her own blood and can’t breathe well because of it. I even got a second opinion at Boston Children’s states away and no one could figure it out. She didn’t deserve to suffer for this long. #medicallycomplex #chd #vsd #asd
#Medicallycomplex Reel by @libraa_snowszzn (verified account) - If I had known this would be my calling I would have went to collage for it! 😭😭 #specialneedsmom #specialneedsparenting #medicallycomplex #nursing
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@libraa_snowszzn
If I had known this would be my calling I would have went to collage for it! 😭😭 #specialneedsmom #specialneedsparenting #medicallycomplex #nursing #PicuNurse
#Medicallycomplex Reel by @the.fault.in.our.genes (verified account) - Cons about living in my Assisted Living Southwestern Ontario 24/7 on site PSW apartment building 💔 You cannot choose not to have certain genders of
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@the.fault.in.our.genes
Cons about living in my Assisted Living Southwestern Ontario 24/7 on site PSW apartment building 💔 You cannot choose not to have certain genders of staff meaning sometimes I can't shower cause I'm a SA survivor and can't with male PSWS. 💔 You don't know what carer you are getting for any booking until they show up making it extremely difficult to really plan anything. 💔 Many of the male staff don't even know how to put in a pony tail let alone braid my hair to keep it from matting. 💔 You cannot tell ALSO not to send certain PSWs even if you don't get along with them or they have said or done hurtful things. "Refusing a PSW is refusing the service." 💔 Our PSWs are not allowed to appear in photos or videos with you so no carer type content can be made like I have seen others do (ex. Amy & “Bob”) 💔 We are not allowed to ask the vaccination status of our PSWs or deny PSWs on basis of vaccine status. There are many great parts about living in my 24/7 on site assisted living building like the fact that we all have full separate apartments that our PSWs have the keys to and go between allowing us to have pets, privacy, and as “normal” a life as humanly possible for those of us who cannot live independently but I will admit these issues can be really upsetting, frustrating, and difficult for me to navigate sometimes especially with being a moderate support needs autistic on top of my physical limitations. #MedicallyComplex #DisabilityActivist #DisabilityRightsAreHumanRights #AssistedLiving #AssistedLivingLife
#Medicallycomplex Reel by @_purplegaia - If you ever wondered what caregiving really looks like behind the scenes… this is it. Insurance is trying to limit suction catheters to three a day
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@_purplegaia
If you ever wondered what caregiving really looks like behind the scenes… this is it. Insurance is trying to limit suction catheters to three a day while my son needs suctioning 6–7 times a day, sometimes more. And when supplies run low, you’re forced to make impossible choices like reusing a “disposable” catheter multiple times just to keep your child breathing safely. Every time he’s repositioned, the secretions come right back. This isn’t optional care this is survival. So how does a system decide what’s “enough” for a human being? #caregiver #cnalife #medicallycomplex #godsplan #explore
#Medicallycomplex Reel by @lilyslittlelungs (verified account) - I took a trip down memory lane last night and found this little gem- Lily was 16 months old, had just found her voice and started cruising. Life was S
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@lilyslittlelungs
I took a trip down memory lane last night and found this little gem- Lily was 16 months old, had just found her voice and started cruising. Life was SO different not so long ago ♥️ . I’ve gotten sooo many comments and messages about her tubing belt- DM for diy info! . #LifeAfterNICU #NICUGraduate #micropreemie #24weeker #preemie #nicu #NICUToNow #NICUJourney #trach #tracheostomy #TrachBaby #tubie #GTube #MedicallyComplex #twin #TwinlessTwin #SurvivingTwin #HonestMotherhood #MedicallyFragile #NICUAwareness #SurvivingStillbirth #LossMom #DeadBabyMama #ChambanaMom #PreemieStrong #StillBornStillLoved #InfantLoss #RebelTrachMoms #LilysLittleLungs
#Medicallycomplex Reel by @seen.tv (verified account) - She's in her princess era @laceyhuxadkins #Seentv #IAmSeen #Disney #Wheelchair #MedicallyComplex #HaloBrace
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@seen.tv
She’s in her princess era @laceyhuxadkins #Seentv #IAmSeen #Disney #Wheelchair #MedicallyComplex #HaloBrace
#Medicallycomplex Reel by @meganbarba88 (verified account) - Who knew a 6 year old could make me SO proud? #motherhood #raredisease #gaittrainer #medicallycomplex
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@meganbarba88
Who knew a 6 year old could make me SO proud? #motherhood #raredisease #gaittrainer #medicallycomplex

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