medicallycomplex hashtag performance
#medicallycomplex showcases diverse stories of individuals navigating complex health conditions. It fosters community, awareness, resilience, support, and understanding, enlightening viewers on challenges faced by these unique medical journeys and experiences.
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Eight years since diagnosis, and Carter is showing us what resilience looks like. At 12 years old, he’s doing well for someone with Sanfilippo syndrome. And yes we did find out that he is type A which is considered to be the most common/severe. Every day is a reminder to cherish the moments that matter most. 💜 #pepememe #pepetheprawn #swipe #fyp #storytime #mco #diagnosis #diagnosisstorytime #sanfilipposyndrome #disney #disneyworld #tramatized #familytrip #medicallycomplex #carterschallenge #rarediseaseawareness #raredisease #momsofinstiktok #specialneedsmom #lifewithadisability #caregiverlife #advocatelikeamother #specialneedsfamily #sanfilippoawareness #sanfilippolife #parentingjourney
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Having a child with a genetic overgrowth syndrome makes them leave that “little” baby stage so fast…. Hes only 7 months old but wears 2t clothes… slow down baby… Edit: some kids are just big even without having this syndrome! BWS has a lot of other underlying Issues besides size 💛💚#beckwithwiedemannsyndrome #geneticdisorder #foryoupage❤️❤️ #awareness #babysoftiktok #medicallycomplex #overgrowthdisorder #MomsofTikTok #baby
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Day 2 of recovery, so far we were thinking “okay, this isn’t so bad. What was everyone talking about?” Only to be given a very big awakening come 5am the next morning. I’ll share that story in the day 3’s video❤️ #fyp #beckwithwiedemannsyndrome #geneticdisorder #awareness #medicallycomplex #macroglossia #overgrowthdisorder #tonguereduction #surgery #picu
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Replying to @Keazma nope, he was just doing his job. The news would have been shitty regardless where we were and honestly I’m thankful to have a doctor like him on our team. #letmeexplain #raredisease #diagnosis #diagnosisstorytime #doctor #genetics #genes #metabolic #sanfilipposyndrome #sanfilippo #carterschallenge #resentment #medicallycomplex #parenting #momlife
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our medically complex triplets’ long list of medical diagnoses 💕 #fyp #foryoupage #triplets #tripletboys #triplettoddlers #medicallycomplex #gtube #trach #gtubelife #medicallyfragile #toddlers #tracheostomy #feedingtubeawareness #diagnosis
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Replying to @🧌 thank you for asking and wanting to know more typically genome test take on average between three and six months to get back #genetics #genome #genometest #test #sanfilippo #raredisease #fyp #qanda #themoreyouknow #medicallycomplex #parenting #MomsofTikTok #learnontikok #caregiver #sahm
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No lies were told #chronicillness #gastroparesis #vascularcompression #smas #tpn #paralyzedstomach #medicallycomplex
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Now gotta clean the rest of the house🫡 #medicallycomplex #trachbabies #restockwithme #cleaningmotivation #cleaningtiktok #gtubebaby #trachbabies #momlife #kleefstrasyndrome #sahmlife
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Im gonna watch YouTube and eat my dinner❤️ #MomsofTikTok #trachbabies #gtubebaby #medicallycomplex #sahm #kleefstrasyndrome #medicalmomma #nightshift #nightroutine
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Tongue reduction day 4. This is a longer video but I didn’t want to leave out any details ❤️ #beckwithwiedemannsyndrome #geneticdisorder #awareness #medicallycomplex #macroglossia #overgrowthdisorder #tonguereduction #surgerytiktok #fyp
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This love runs so deep because of the depth that has been created over the last year. When you have a medically complex child the bond is different. The trust your child builds in you makes you strive to protect them at levels you didn’t know were in you. When you get so close to loosing them, getting another day is never taken for granted, you see each moment as a precious gift. Having Luca home this last year has been such a gift. He fought so hard to get this point and it’s his happiest place. Luca, believing for another sweet year home with you, this is all my heart wants ✨ God is good. #downsyndrome #adoption #medicallycomplex
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Travel day 💛💚 up at 2:30am and two flights later, we made it across the country. #beckwithwiedemannsyndrome #geneticdisorder #foryoupage❤️❤️ #awareness #babysoftiktok #medicallycomplex #overgrowthdisorder #macroglossia #tonguereduction
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Just in time for 2025!!! C-Money is line free!!!! We cannot wait to do all of his favorite things and share all of them with you!!! From our family to yours, happy New Year! May your 2025 will be filled with a lot of love, joy, happiness, health, Carter, Vlogs, and memories, of course ❤️ we love you! #carterschallenge #raredisease #genetics #chronicpancreatitis #pancreatitis #piccline #tpn #lipids #liquidnutrition #educational #advocate #medicallycomplex #sanfilipposyndrome #sahm #caregiver #parenting #disabilityparenting #themoreyouknow #LearnOnTikTok
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Replying to @Bobbie Gaudette532 if this was something we could fix with the diet trust me, I would become a nutritionist ASAP unfortunately, Sanfilippo syndrome cannot be fixed with a diet. #sanfilipposyndrome #sanfilippo #heparannsulfatase #diet #carbs #qanda #genetics #themoreyouknow #LearnOnTikTok #didyouknow #genetherapy #quickrundown #MomsofTikTok #caregiver #medicallycomplex #disabilityparenting #sahm #science #stem
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Walker got approved for Palliative Care! We finally have a nurse ! #medicallycomplex #palliativecare #hospice #homehealth #homehealthnurse #tpn #broviac #gtube
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Samuel’s sleep study prep and results ❤️ #fyp #beckwithwiedemannsyndrome #geneticdisorder #foryoupage❤️❤️ #awareness #babysoftiktok #medicallycomplex #overgrowthdisorder #macroglossia #tonguereduction #sleepstudy
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Tongue Reduction Surgery: (I had to delete and repost and I lost 3 very kind comments, sorry!) I know its taking me awhile to get these posted. Its hard looking back and honestly I feel like my brain blocked a lot of the memories due to the stress. #beckwithwiedemannsyndrome #geneticdisorder #awareness #medicallycomplex #overgrowthdisorder #macroglossia #fyp #foryoupage❤️❤️ #tonguereduction
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Being a mom has been my dream since I was little, and I wouldn’t trade it for the world. But sometimes, I do miss the freedom of just being me. The days of picking up and going without a checklist of diapers, meds, extra clothes, and a backup plan for the ‘what-ifs.’ And if were being honest I havent had a weekend away with my husband in over ten years. Yes, I cherish these moments and know how fast time flies—trust me, I’m present for it all. But is it okay to admit I also miss the simpler days? Because being grateful for where I am doesn’t erase the longing for what once was. Moms, I know I’m not alone in this 💕 #momlife #momtruths #honestmotherhood #motherhoodunfiltered #realmomlife #momstruggles #momsofinstagram #momjourney #momcommunity #parentingjourney #momthoughts #momconfessions #motherhoodmoments #momblogger #momhustle #parentingtruths #selfcareformoms #motherhoodbalance #momlifeuncut #momguilt #disabilityparentinghack #medicallycomplex #motherhoodjourney #mommingainteasy #momgoals #momtribe
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