Wilbo’s Blends is here to help you, whether it’s for school, holiday, being away from home or just needing a day off blending yourself. Find out more about our organic real food blends and order yours from our website today. Link in the bio. #WilbosBlends #FeedingTubes #RealFood #BlendedDiet #Gtubeawareness #feedingtubeawareness #stroke #tubefeeding #headandneckcancer #tubefeedingawareness #EnteralNutrition #Tubie #NHS #GTube #NutritionTherapy #TubeFed #GTubeLife #FeedingTubeAwareness #Blendeddiet #disability #FeedingTube #MedicalNutrition #enteral #gtube #nhs
Hello, Hello!!! Our annual Memorial Day Sale is coming up! Enjoy 15% off on everything all weekend long- no code required! #gtube #gtubebaby #tubie #tubielife #tubiebaby #tubeheroes #feedingtube #tubefeeding #feedingtubeawareness #etsyfinds #littlelen #gjtube #tubefed #handmade #handmadeisbetter #gtubelife #gtubepads #littlelencreations #comforttubies #stoma #stomacare
Physical therapy in session!🏀 . . . Contact us for more information! 📞MIAMI DADE 786-238-7220 📞BROWARD 954-869-2501 📧 [email protected] . We are open 365 days a year providing our pediatric community with daycare nursing services and therapies (PT,OT,ST,ABA) . #ppecbroward #ppecmiami #oxygendependant #specialneedsmiami #specialneedsbroward #medicallycomplex #medicallyfragile #pediatricnurse #ppec #microcephaly #specialneeds #gtube #tpn #epilepsy #seizures #cerebralpalsy #browardcounty #miamidadecounty #homehealth #miamilakes #trach #fortlauderdale #pediatrictherapy #pediatricoccupationaltherapy #pediatricphysicaltherapy #pediatricspeechtherapy #hollywood #coconutcreek #opalocka
#summerbreak day1 No daynurse. Dad working and recovering from back injury. We stayed busy with grapefruit and lots of water. 4 showers, 1 bath, pool time, patio foot bath and a short visit to the river. We can do this!!! Again :/ We are needing a RN or LVN for daytime hrs in salado, tx. Flexible hrs. Easy and fun job hanging out with Julia while keeping her safe :) #specialneedsparenting #medicallycomplex #deafblind #chargesyndrome #caregiver #gtube #sensoryplay #homehealthnurse #openjob
RESPECT THE LOCALS 🦈 @sonandcoapparel does it again with this fun acid washed graphic tee! 🌴 • Dropping TODAY - 4pm PST • ( code | ACTIONJACKSON ) #babyskater #toddlerfashion #brandrep #coolkid #actionjackson #gtube #boyfashion #tubie #babyinfluencer #smallshoplove #naturekids #waterbaby #surferdude #babyinfluencer #babiesofinstagram #babysurf
We preemie parents have very different conversations after experiencing the NICU. 🙃🙃🙃🙃 #preemies #preemiepower #preemiestrong #preemiemom #preemiedad #preemiehood #preemietwins #preemiesofinstagram #preemielife #micropreemie #preemies #preemieprincess #nicu #nicunurse #nicubaby #nicumom #niculife #nicu graduate #nicubabies #nicustrong #nicujourney #nicuwarrior #nicuawareness #nicudad #lifeafternicu #nicuparents #fightlikeapreemie #nicusupport #gtube
🌟 To Our Valued Customers 🌟 We want to take a moment to express our heartfelt gratitude for your continued support of our tubie creations. It means the world to us! Due to rising costs of materials and ensuring fair wages for our talented team, we will be adjusting our prices starting from next month release - 1st June. This change will help us maintain our commitment to providing high-quality Tubie Fun products and uniqueness you’ve come to love and enjoy. Thank you for understanding and for being a part of our journey. Your support helps us keep handcrafting with love and care, to celebrate all things tube feeding and special needs! ❤️ #SupportSmallBusiness #HandmadeWithLove #QualityMatters #PriceUpdate #ThankYou #feedingtube #tubefeeding #feedingtubeawareness #tubefed #tubefeedingawareness #homeenteralnutrition #feedingtubejourney #feedingtubeaware #feedingtubelife #tubie #tubielife #gastrostomytube #nasogastrictube #jejunalfeedingtube #enteraltube #pegfeeding #jtube #gtube #peg #tubiemum #tubechild #feedingtubebaby #tubiecommunity #tubefeedingfamily #tubiekids
Hi! My name is Liz and I'm 30 (on June 16th) and have love making tiktoks just kind doing the silly little tiktok dances and trends and wanted to make an Instagram to post to as well. 😄 I have a history with dance, I was traditionally trained for about 10 years so it's a fun little way to tap into that! 💃 I also have a feeding tube and will be doing some content about my feeding tube as well. I don't hide it to normalize it! 😉 Stay tuned! (also I'm in love with this song now!) #feedingtube #tubefed #tubie #cutietubies #jtube #gtube #gjtube #tiktok #tiktokdance #tiktoktrends #fun #dancing #dance
A beautifully sunny day made a little sweeter with ice cream & fat-free sherbert for Nick from Selma's. We had another cardiology appointment with an x-ray and labs last Friday. The super diuretic we added seemed to do the trick as the fluid in his chest looked much better. With Memorial Day and our doctor being on vacation, we got a few extra days between visits. We don't have to go back until next Wednesday for repeat x-rays and labs along with an echo. Fingers crossed that Nick is still healing and making good progress. We are still trying to get to our new normal while trying not to get too far ahead of ourselves where we don't stop to be thankful for another day. #CHDLife #NicksHeart #HLHS #CHDAwareness #MyCHDwarrior #HeterotaxyLife #IAmTheStorm #gtube #tubefed #heartwarrior #StrongerThanTheStorm #CHD #CHDkid #CHDsurvivor #singleventricle #halfaheart #heartfamily #heartjourney
Got my picc line placed Monday. I’m so glad I did because it was rough without TPN. 💕 #hrt #transftm #transisbeautiful #transman #transanddisabled #testosterone #chronicillness #centralline #gtube #urostomy #ehlersdanlos #raredisease #ehlersdanlossyndromeawareness #rarediseaseawareness #fulltimewheelchairuser #tpn #tpndependent #ivfluids #ivmeds #piccline #picclineplacement #gastroparesis #intestinaldysmotility #esophagealdysmotility #esblcolonized #hydronephrosis #pots #neurogenicbladder
New today @miltonandmaisie #tubie #feedingtube #enteral #gtube
Our real response to comments like this: DON’T JUDGE JUST LOVE!! 🫶🏻 Shout out to all the mamas out there doing the very best they can by their babies!! Y’all are the least lazy people I know. 💪🏻❤️ #fedisbest #dontjudgejustlove #gtube #gtubelife #littlecharlotterose #congenitaldisorderofglycosylation
Ensuring our loved ones receive their medications correctly is crucial for their health and well-being. Today, we’re highlighting the importance of proper medication administration instructions plus the preferences to get your kiddo to take their meds. Like they get a sticker in their sticker book when they get their weekly injection. They deserve that sticker or 5 min of iPad. We know how to give them their meds but the nurse doesn’t or sometimes even grandma needs a refresher. mejo gives you tons of space to capture all that important info that’s readily available to share with others who are part of the care team. Fill it out once and aways have it ready to go! We want to highlight some examples that some mejo moms have shared with us in a additional med notes 101. Let’s support each other and keep our kids healthy! By following these steps, we can ensure our children receive the care they need and deserve. Share your tips and experiences in the comments below! #mejo101 #GTubeCare #MomCommunity #SeizureManagement #HealthyKids #medlist #medications #gtube
At the core of @LumaCleanCares lies a deep sense of compassion and a relentless drive for innovation aimed at improving lives. Central to our mission is the belief in the power of listening and collaboration. We are eager to engage with partners, hungry for opportunities to make a positive impact together. “One of the many things we are proud of and pursuing is collaborations. I envision doing more collaborations with not just medical practitioners, but also moms and dads and patients themselves to create new things…and I make sure that whoever brings us ideas is part of the shares in the rewards…as long as it was your idea and it helped. We want to be fair and honorable.” – Martin Von Dyck . . #Tubies #Gtube #GtubeLife #chronicillness #patients #LumaCleanCares
Handling fluid intake with tube feeding can be challenging! First, it’s hard to know how much fluid you need to give in addition to formula or blended food 😕 And even when you know the amount, squeezing this into your daily routine can be tough 😵💫 But for many families I’ve worked with, understanding their child’s fluid needs and the best ways to get fluids in has been a game-changer in improving their child’s digestive issues. This post explores: 1️⃣ The common challenges associated with hydration and tube feeding. 2️⃣ Offers guidance on determining your child’s fluid intake and practical tips for getting more water in if needed. 3️⃣ Explains how this all plays a role in your child’s digestion and overall health. 4️⃣ ...and so much more! Link in bio 📲 . . . . #blendeddiet #blendeddietfortubies #feedingtube #feedingtubeawareness #specialneedsmom #medicallycomplexkids #gtube #feedingtubelife #feedingtubes #gtubebaby #gtubelife #gtubeawareness #tubies #tubielife #tubiemom #tubiebaby #tubiecommunity #tubefeeding #tubefed #tubefeedingawareness #feedingtubestrong #feedingtubejourney #feedingtubeaware #developmentaldelay #gastrostomytube #enteralnutrition #medicalmom #tubechild #tubefeedingfamily #tubiekids
@crump_and_co Endless Summer Part ✌🏻dropping TODAY at 10am EST. ☀️ This “Waves over Babes” tee and matching shorts will both be available. Use code “ACTIONJACKSON” at checkout 🧡 #babyskater #toddlerfashion #brandrep #coolkid #actionjackson #gtube #boyfashion #tubie #babyinfluencer #smallshoplove #naturekids #waterbaby #surferdude #babyinfluencer #babiesofinstagram #babysurf
Imagine the possibilities that 13 cents a day can unlock. With Pennies for Hope, you can be a lifeline for children facing adversity. Your daily donation may seem small, but its impact is immeasurable. Together, let's turn pennies into pathways for brighter futures. Join us in transforming lives, one penny at a time. Donate today and be a beacon of hope for those who need it most. ➡️ Donate today: bit.ly/penniesforhope #JARofHope #SpreadHope #savethefirstchild #penniesforhope #duchennemusculardystrophy #searchforacure #musculardystrophy #DuchenneAwareness #BreakTheSilence #HopeForDMD
From NICU grad to kinder graduate. From 5.6lbs - 53lbs. From 18"- 3'10". From we don't know her quality of life- to an energetic 6yrs old. From she is delayed for her age to she's too advanced for her age academically and skills wise. This is the result of trusting God's perfect time. Olivia you showed everybody how strong you are and your medical needs didn't hinder you from doing what you love and proved everyone that nothing can stop you from being SASSY! 😝 I love you so much and please dont ever change.You are a ray of sunshine to everyone!! When others are focus on what you cant do, see it as an opportunity to focus on who God is and what he can do through you. Sometimes inability is the way for experiencing the blessing of God's powerful presence. #treachercollinsyndrome #trach #gtube #microtia #choosekind #barrowcraniofacial
Regan was a trooper. They gave her this and it made me tear up. No one ever shames or makes fun of an infant, but when they become older that changes. That reality hits me hard. I view Regan as this perfect being created in God's image, but one day someone will come along and try to tarnish that. However, no matter what comes her way we will remind her she is beautifully and wonderfully made. We love her differences and could not imagine our life without this little princess. #oimom #oiawareness #gtube #gtubelife #courage #strength #beautiful
He ate some more food today!! 🫐🍌 And played with Teddy Ruxpin. ❤️ #learningtoeat #gtube #mosaicdownsyndrome #downsyndrome #teddyruxpin
Scroll to see why we love these @readysetrompers so much! Elias recently had the opportunity to model for their latest drop and we were so excited because we have yet to find anything else that is so functional for E. Finding clothes for a kiddo with a Central Line and a GJ tube has not been easy but we absolutely love these rompers and they make accessing his lines and dressing changes so easy. Bonus points for how practical they are for hospital stays! These would be so perfect for the NICU too! #adaptiveclothing #adaptivebrand #nicuclothes #preemie #nicu #nicugrad #medicallycomplex #hospitallife #niculife #picu #hospital #adaptiveclothing #tubie #gtube #tpn #centralline
Today is Florence's name day🥳 When I was pregnant, I often listened to #florencewelch music - it calmed me down, cheered me up and gave me strength, faith that everything will be fine. Her music still gives me goosebumps - her voice is so powerful. In my opinion, this name suits her and I am extremely grateful to the universe for our little girl Florence 🫶 Šodien Florencei ar māsu ir svētki! 🥳Par visiem retajiem un skaistajiem vārdiem, kas nav ielikti kalendārā!🤗 #russellsilversyndrome #rss #silverrussellsyndrome #smallbutmighty #gtube
🧡 Tubie Life now has a YouTube channel! 🧡 Head over there to watch my first ever studio vlog and see some BTS of things over at Tubie Life HQ! 🧡 If you can drop a like and subscribe to stay up to date and help me grow 🧡 https://youtu.be/auJwfX3jkPQ?si=fsXEl2laPvPvpx6d #tubie #tubielife #smallbusiness #feedingtubelife #tubefeeding #feedingtube #smallbusinessvlog #ngtube #nasogastrictube #gtube #jtube #tpn #chronicallyill #chronicillness #youtube #youtubechannel #studiovlog
@baycoapparel Scuba Sets dropping TODAY at 3PM EST 🖤🌊 These are perfect for summer and beyond. Multiple colors and style available - don’t wait! ☀️ ( code | ACTIONJACKSON ) #babyskater #toddlerfashion #brandrep #coolkid #actionjackson #gtube #boyfashion #tubie #babyinfluencer #smallshoplove #naturekids #waterbaby #surferdude #babyinfluencer #babiesofinstagram #babysurf
. We are thankful to @cardinalhealthofficial for sharing Freeman’s story and for getting FreeArms to families who need them. Read the article at the link in our bio! #cardinalhealth #freemansstory #freearmfan #tubiebaby #medicalmom #childlife #medicallycomplex #nicu #nicubaby #gtube #gtubebaby #tubefed #tubie
Starting our day with a morning group activity!☀️🖍️ . . . Contact us for more information! 📞MIAMI DADE 786-238-7220 📞BROWARD 954-869-2501 📧 [email protected] . We are open 365 days a year providing our pediatric community with daycare nursing services and therapies (PT,OT,ST,ABA) . #ppecbroward #ppecmiami #oxygendependant #specialneedsmiami #specialneedsbroward #medicallycomplex #medicallyfragile #pediatricnurse #ppec #microcephaly #specialneeds #gtube #tpn #epilepsy #seizures #cerebralpalsy #browardcounty #miamidadecounty #homehealth #miamilakes #trach #fortlauderdale #pediatrictherapy #pediatricoccupationaltherapy #pediatricphysicaltherapy #pediatricspeechtherapy #hollywood #coconutcreek #opalocka
Preeclampsia is the reason Beaux was born at 26 weeks, measuring 23 weeks💜 • • • • • • • • • #watchbeauxgrow #nicu #nicubaby #nicumom #micropreemie #preemie #26weeker #preeclampsia #preeclampsiasurvivor #prematurebabyawareness #premature #gtube #gtubebaby #worldpreeclampsiaday #preeclampsiaawareness
DBS gets turned on today.💜 We are getting ready to go to meet the team and get her deep brain stimulator turned on. I'm nervous and excited, and I know it's going to be a process that requires lots of patience. An update this past week, Elise's been quiet the last few days. She's battling some seizure, too. We had tonadminister redcue 2x within 8 days. She's been adjusted very well to her G-tube. This is a blessing for us. And to all the tubie families, you were right. I wish we had done it sooner. Wish Elise luck today. Stay tuned. Thank you for following along. #purpleforelise #postsurgery #gtube #deepbrainstimulation #epilepsy #epilepsyadvocate #epilepsymatters #epilepsywarrior #raredisease #rarewarrior #SubcorticalBandHeterotopia #doublecortex #epilepsywarrior #epilepsylife #epilepsyawareness #seizuressuck #seizureawareness #seizures #vns #corpuscallosotomy #epilepsyaffectsthewholefamily
Got all dressed up today to visit grandma and grandpa. Up late pumping but in about 4 hours will be up again getting ready to go to her long awaited 8 week check up. We can't stand the drive so we have been dreading going back to that hospital :p But excited for the milestone and for them all to see her again :) must pick a cute outfit for her for the occasion hehe #postpartum #NICUjourney #gtube #checkup
"How cute are my new bottles from Squeasy Gear . They're spill free, mess free and great for when mommy and I are on the go..and I got my two favorite colors. They're easy to store and they're dishwasher safe. Check them out!" - @keepingupwithazariah . . . . . #reusable #gamechanger #nospills #nomess #selffeeding #foodpouch #kidapproved #kidfood #onthego #easymeals #healthyeats #kidlife #toddler #momwin #momapproved #kidfriendly #healthykids #busymom #foodforkids #toddlerlife #sahm #homemade #feedingtube #tubie #gtube #squeasy #squeasygear
Preemies of the Day: Meet Rogelio & Exequiel!!! They were born at 24 weeks. Mom had to have a c section and couldn’t get up to see her twins until the following day in the afternoon. Her nurse went to the NICU and took video and pictures of them with mom’s phone. Their family was forever be grateful for her! They ended up spending 89 days and 91 days in the NICU. The family is forever grateful for not only saving their boys but saving their family. #preemies #preemiepower #preemiestrong #preemiemom #preemiedad #preemiehood #preemietwins #preemiesofinstagram #preemielife #micropreemie #preemies #preemieprincess #nicu #nicunurse #nicubaby #nicumom #niculife #nicu graduate #nicubabies #nicustrong #nicujourney #nicuwarrior #nicuawareness #nicudad #lifeafternicu #nicuparents #fightlikeapreemie #nicusupport #gtube
Elyses first Buddy Day🥹 #microcephalyawareness #microcephaly #cerebralpalsy #cerebralpalsyawareness #specialneedsmom #hypotonia #inclusionmatters #alopecia #alopeciaawareness #baldisbeautiful #hashimotos #nonverbal #gtube #tubiemom #tubielife #medicalmom
Chris, in our private FB group, says that she’s ready for hiking and just getting out in nature. What are you looking forward to? PRIVATE FB GROUP FOR TUBIES & CAREGIVERS: link in bio (Please be sure to answer the few questions so your request will be easily approved.) . . . #tubietipstuesday #tubie #tubietips #tubielife #gtube #feedingtube #tubefeeding #rdchat
He is doing it! Jesse is eating! For over two years Jesse has received all his nutrition via feeding tube. On April 1st we started Jesse’s wean, taking away some of his formula in hopes that hunger would drive him to eat orally. We worked with our speech/feeding therapist and a dietician and every two weeks we took away more formula. As of a couple weeks now Jesse has been fully off the formula and EATING FULLY BY MOUTH!!! It really feels like a tremendous miracle that Jesse has accomplished this. Thank you to those who have prayed this prayer for our boy…God has answered! It feels unbelievable that in a matter of 4-6 weeks he went from being fully tube fed to eating fully by mouth. Praise be to God!!! The next hurdle will be drinking enough liquids so he can transition fully off using the tube, as he still receives water and milk that way. This will be a longer process as he still needs liquids to be quite thick to be safe to drink and he only currently drinks a couple ounces per day from a straw. So prayers are appreciated for that process! Also, did you notice that amidst this weaning process, he learned to walk?!?! This kid just blows me away! Go Jesse Go! #gtube #tubeweaning #tubie #downsyndrome #tubefeeding
At JAR of Hope, our mission is clear: to provide hope, support, and resources to children and families battling Duchenne muscular dystrophy. Every day, we strive to make a difference by funding research, raising awareness, and offering assistance to those in need. Together, we're working towards a future where this devastating disease no longer threatens young lives. Join us in our mission to bring hope and healing to those affected by Duchenne. Together, we can make a difference. #JARofHope #SpreadHope #savethefirstchild #penniesforhope #duchennemusculardystrophy #searchforacure #musculardystrophy #DuchenneAwareness #BreakTheSilence #HopeForDMD
Navigating the Sea of Diagnosis can be extremely challenging. Meet Ellie – a vivacious six-year-old with an infectious love for monkeys and an affinity for fidget toys. Behind her radiant smile lies a story of courage that transcends her tender age. For the past two years, Ellie’s health has been on a downward spiral, shrouded in mystery, as Ellie’s mom, Kristen tirelessly sought answers to the perplexing array of symptoms plaguing her daughter. After enduring a marathon of hospital visits, consultations, and evaluations spanning multiple institutions, Kristen’s quest for clarity finally bore fruit. Recently, the elusive puzzle piece fell into place as Ellie received a diagnosis of dysautonomia – a condition affecting the intricate web of nerves governing the body’s involuntary functions, including heart rate, digestion, and blood pressure.The sea to diagnosis was anything but smooth sailing. Kristen recalls the countless hurdles they faced along the way – the moments of despair, the nights spent anxiously poring over medical journals, and the relentless pursuit of medical professionals who could offer insight into Ellie’s condition. Check out @onceuponagene.podcast diagnostic odyssey map In the whirlwind of appointments and hospitalizations, Kristen discovered a lifeline that eased the burden of managing Ellie’s complex medical needs – mejo, a comprehensive journaling tool that became her trusted companion throughout their journey. With mejo in hand, Kristen could effortlessly organize vital information – from medications and specialist details to procedures and g-tube sizes – providing medical professionals with a holistic view of Ellie’s health history at a glance. Beyond its practical utility, mejo symbolized something far more profound – a testament to Kristen’s unwavering commitment to advocating for Ellie’s well-being. In a healthcare system often characterized by fragmentation and complexities, mejo served as a tangible reminder of the power of proactive engagement and personalized care. #momentsofcare #raredisease #rare #diagnosticodyssey #complexcare #dysautonomia #pediatrics #gtube
These @baycoapparel scuba cargo shorts are everything! 😍❤️ Multiple colors & styles available! • Dropping TOMORROW @ 3pm EST • ( code | ACTIONJACKSON ) #babyskater #toddlerfashion #brandrep #coolkid #actionjackson #gtube #boyfashion #tubie #babyinfluencer #smallshoplove #naturekids #waterbaby #surferdude #babyinfluencer #babiesofinstagram #babysurf
This super cool celestial set has sparkly gold on it and looks amazing against the night sky!! #tubie #feedingtube #gastroparesis #gtube #gjtube #jube #tubefed #tubielife #chronicillness
Don’t want none unless you got 🍔BUNS🍔 hun! 🇺🇸 Tee: @shoplittlehoneys Shorts: @baycoapparel (ACTIONJACKSON) Socks: @kickinitupsocks (ACTIONJACKSON) #babyskater #toddlerfashion #brandrep #coolkid #actionjackson #gtube #boyfashion #tubie #babyinfluencer #smallshoplove #naturekids #waterbaby #surferdude #babyinfluencer #babiesofinstagram #babysurf
. #shoppingbuddy 🛍️🛒🛍️ Thank you @lexi.stadler for sharing this fun photo with us! #tubiebaby #medicalmom #childlife #medicallycomplex #nicu #nicubaby #gtube #gtubebaby #tubefed #tubie #freearmfan #feedingtubemom #tubiekid #feedingtubeawareness #feedingtube #njtube #freearm #dietitian #childlifespecialist #ngtube #feedingtubebaby #tubefeeding #tubielife #feedingtubelife
This girl is growing like crazy now 🤯 last Tuesday she was 27lbs 9.8oz than that Friday she was 28lbs 9.1oz yesterday she weight 29lbs 0.8oz 😊 I’m just glad she is finally gaining the weight that she neeeded for the longest ❤️ #gtube #gtubeawareness #gainingweight #29lbstoddler
It's always a struggle being around similar aged children but we are so lucky to have a great group of friends who help us adapt and overcome. Plus they take great candid photos 📸 #raredisease #russellsilversyndromeawareness #russellsilver #silverrussell #russellsilversyndrome #rarecondition #toddler #tubie #gtube #gtubelife #toddlerlife #toddlersofinstagram
🌟 Brighten Your Child's Day with Our Adorable Rainbow Themed Tapes! Dive into a world of imagination and creativity with our newest hypoallergenic, latex-free tapes, designed to bring comfort and joy to your child's daily life. 👀 Swipe to explore the vibrant Rainbow Collection 🌈🌈🌈 🌍 This May, your purchases make a difference. 10% of all proceeds from the Rainbow Collection will be donated to EDS research, helping advance care and understanding for those with Ehlers-Danlos Syndrome. 🛒 Click the link in our bio to shop now and support a great cause while keeping your child stylish and comfortable. 👫 Plus, join the Tubie Movement Community Group on Facebook to connect with other parents, share experiences, and support each other’s journey with positivity. https://m.facebook.com/groups/1548730919028433/?ref=share&mibextid=NSMWBT Follow The Tubie Movement on Facebook to stay updated with our latest news and stories. 🔗 links in bio #JoinTheMovement #TubieProject #EDSAwareness #ChronicIllnessSupport #RareDiseaseAwareness #HypoallergenicCare #SensitiveSkinSolutions #MedicalArt #WearableArt #SupportEDSResearch #ShopToSupport #TubieCommunity #BeWildBeWonderful #FeedingTube #FeedingTubeAccessories #TubeKnowledge #EmpowerYourself #TubieEducation #TubieSupport #TubieJourney #TubieTips #TubieLife #TubeFeeding #GTube #JTube #MedicalNutrition #TubeFeedingJourney #TubeFeedingSupport #NutritionalSupport #HealthAndWellness
Congratulations on your graduation, Carleigh! Thank you so much for ordering and choosing to wear a Spoonie Sets design on your special day. #tubieclip #tubieclips #portcover #jtube #gjtube #gtube #tubiepads #feedingtube #tubiepad #spoonie #tubie #feedingtubeawareness
🧺 Introducing our perfectly designed Wash Bags! 🧼✨ Keep your Tubie Fun products safe and sound during washes with our 25cm x 30cm Wash Bags. These handy bags are ideal for: ✅ Washing Tubie Fun products without losing them in the wash ✅ Storing used pads in the bathroom ✅ Keeping ready-to-wear Button Pads in one convenient spot Get yours today for just $5.00 each and make laundry day a breeze! 🌟 #WashBags #TubieFun #StayOrganized #EasyLaundryDay #ButtonPadsStorage #feedingtube #tubefeeding #feedingtubeawareness #tubefed #tubefeedingawareness #homeenteralnutrition #feedingtubejourney #feedingtubeaware #feedingtubelife #tubie #tubielife #gastrostomytube #nasogastrictube #jejunalfeedingtube #enteraltube #pegfeeding #jtube #gtube #peg #tubiemum #tubechild #feedingtubebaby #tubiecommunity #tubefeedingfamily #tubiekids
#tubielife #gtube #feedingtubelife #lorisewssometimes #tubiepads #velcrotubiepads
The side-by-side comparison of the ingredients found in many standard ketogenic feeding tube formulas and our whole food, organic, plant-based formula is quite astounding. There are 12 whole food ingredients packed with organic nourishment in Keto Peptide. . . . #foodasmedicine #icunutrition #wholefood #organic #plantbased #gtube #feedingtube #rdchat
13 cents a day. It's the price of a gumdrop, but it could be the key to changing a child's life forever. With Pennies for Hope, your spare change can provide essential resources, support, and opportunities to children in need. Together, let's turn pennies into pathways for a brighter tomorrow. Join us in making a difference, one small donation at a time. Every penny counts. Donate now and be a part of something truly impactful. ➡️ Donate today: bit.ly/penniesforhope #JARofHope #SpreadHope #savethefirstchild #penniesforhope #duchennemusculardystrophy #searchforacure #musculardystrophy #DuchenneAwareness #BreakTheSilence #HopeForDMD
K-Dawg has a pretty eventful weekend. Grandma Vickie came to visit, we stayed at a cabin next to the river in Estes Park, barbecued, hot tubbed, watched the girls go kart, bumper cars, mini golf and ate at a bunch of restaurants #kolesonpriest #priestyboys #tpn #tpnbaby #tpnlife #gtube #gtubebaby #gtubelife #aintnothingbutagtubebaby #shortgut #shortgutsyndrome #shortgutsowhat #estespark #vacation
These pump stickers are just a dream ✨ #tubie #chronicillness #tpn #gastroparesis #feedingtube #peg #gtube #mcas #ehlersdanlossyndrome #spoonies #eds #intestinalfailure #disability #hospital #neurodiverse #autism #adhd #nj #ng #port #tpn
If you’ve noticed it’s been a bit quiet that’s because I’ve been crazy busy with some awesome orders. I absolutely love this holographic finish, I’ve got a few great pump stickers / tubie tins to show you over the coming days, alongside some great new tape designs ✨ #tubie #chronicillness #tpn #gastroparesis #feedingtube #peg #gtube #mcas #ehlersdanlossyndrome #spoonies #eds #intestinalfailure #disability #hospital #neurodiverse #autism #adhd #nj #ng #port #tpn
When your child gets sick, especially if they have a lot going on medically, it can bring up a lot of anxiety and fear. A small cold can quickly turn into something more threatening, and anytime you go back into the hospital you're flooded with memories and emotions. Having tools that help your child fight off illnesses and avoid hospital stays is huge 🙌🏽 For many families, this tool is providing real food for part or all of their child's nutrition. There's so much more flexibility with real food and I think this makes all the difference. Someone in the family getting sick? Ramp up the immune boosting foods to help your child fight it off 💪🏼 Is your tube fed child sick? Give them bland foods instead of having to go days without nutrition because formula isn't tolerated 🤒 Does your child struggle with reflux and aspiration? Use thicker food to help avoid respiratory illness 👏🏼 You may be thinking, this all sounds great, but I have no idea where to start. That's why I developed the Blended Tube Feeding Made Simple method, a strategy that makes it easy to test out and transition to real food, without all the guesswork. If you're interested in learning more, send me a DM or head to the link in my bio. There are various support options available to fit different needs! 📲 . . . . . #blendeddiet #blendeddietfortubies #feedingtube #feedingtubeawareness #specialneedsmom #medicallycomplexkids #gtube #feedingtubelife #feedingtubes #gtubebaby #gtubelife #gtubeawareness #tubies #tubielife #tubiemom #tubiebaby #tubiecommunity #tubefeeding #tubefed #tubefeedingawareness #feedingtubestrong #feedingtubejourney #feedingtubeaware #developmentaldelay #gastrostomytube #enteralnutrition #medicalmom #tubechild #tubefeedingfamily #tubiekids
. #fountainfun ⛲️⛲️⛲️ Thank you @braunschweiger_sandwich for this fun photo! #tubiebaby #medicalmom #childlife #medicallycomplex #nicu #nicubaby #gtube #gtubebaby #tubefed #tubie #freearmfan #feedingtubemom #tubiekid #feedingtubeawareness #feedingtube #njtube #freearm #dietitian #childlifespecialist #ngtube #feedingtubebaby #tubefeeding #tubielife #feedingtubelife
Today our #TubieHero of the month, Josie, is an inspiration to find the joy in the little things. Her Mom says: “Josie is such a happy kid. She always finds a reason to smile. Something simple as singing a song to her or quick tickle. It’s impossible to be in a bad mood if you around Josie. She is pure joy.” 🧡 . . #tubie #tubielife #gtube #joy
@baycoapparel hybrids are so next level! 😎 Available in NINE different colors - each with their own fun patterned liner 🖤 ( code | ACTIONJACKSON ) #babyskater #toddlerfashion #brandrep #coolkid #actionjackson #gtube #boyfashion #tubie #babyinfluencer #smallshoplove #naturekids #waterbaby #surferdude #babyinfluencer #babiesofinstagram #babysurf
A Cranberry Turkey Grilled Cheese recipe for tube-fed people? It's now possible! Try this recipe created by Registered Dietitian, Hilarie Geurink @blendedtubefeeding. Cranberry Turkey Grilled Cheese Recipe • 1 pouch Real Food Blends Turkey, Sweet Potatoes & Peaches • 1 slice whole wheat bread, medium* • 1 oz provolone cheese** • 2 Tbsp cranberries, dried • 1 Tbsp butter** • 1 cup whole milk** • ½ Tbsp rosemary, dried Instructions: Combine the ingredients and blend until you have a smooth consistency. *Contains wheat. **Contains milk. Download our new tube feeding recipe book today. Link is in our bio. #RFBRecipes #RealFoodBlends #tubefed #feedingtube #gtube
When we were inpatient with Oliver, we had a running joke that he was just trying to fill out his medical “punch card” by being seen by as many specialities as he could. We already see cardiology, pulmonology, neurology, gastroenterology, hematology, ENT, and PM&R. He has apparently decided to resume that goal because we’ve now gotten pretty acquainted with Orthopedics. A couple of months ago, Oliver started limping, pointing to his left hip and saying it hurt. The day before he had been swinging on a swing in our backyard. He was swinging on his belly, and apparently fell out of it face first. When Elliot came to get me, Oliver was facedown in the grass, his ankles still in the swing. He was half laughing, not too phased by it. The next morning, he had a bit of a limp. He has a pretty high pain tolerance so he insisted on pushing through it and by the next day was back to normal. We didn’t think anything of it. A few weeks later he woke up having pain in that same area, and like before, by the next day was unbothered. I took him to the pediatrician for imaging afraid that by letting him push through it we were making something worse. The X-ray was normal and we were recommended to give him Tylenol and let him rest and follow up with orthopedics. They also drew labs to see if there was an infection but those came back normal as well. We met with ortho a few days later and by that time he was no longer in pain or limping, so their exam was normal. A week or so later and he woke up crying, same pain in the same area. We started noticing a pattern that on the mornings he’d wake up in pain, he’d done something more physically intense the day before, like tball or a lot of running and jumping. He’d recently been practicing a lot of hopscotch for physical therapy too. The strange thing was, he’d never complain of pain the day of, always the next morning, and his pain would get better as the day went on. …
Bridgerton stills by AdaptedDesign #adapteddesign3d #bridgerton #netflix #medical #disability #caregiver #parenting #tubie #gtube #hospital #accessibility #doctor #memes
🧡 THIS OR THAT 🧡 Which pattern do you prefer? Let me know in the comments below what patterns you want to see in my store! #tubielife #tubielifeuk #tubefeeding #feedingtube #tubie #ngtube #njtube #tpn #gtube #jtube #peg #feedingtubelife #feeding #tubefeeding
It takes a village to support Raiden. Nearly three years ago, we had no idea what this journey would entail or who we would encounter. While we wish we never had to meet them under these circumstances, we are incredibly grateful for the amazing people who make up Raiden’s care team. His physical therapist, occupational therapist, speech therapist, feeding therapist and many others have shown immense love and dedication to Raiden and our family. We are truly thankful for each and every one of them. ***Photo above are just a few of those incredible people ❤️ #ittakesavillage #raiden #careteam #thankful #pt #ot #speech #feedingtherapy #raredisease #gtube #dearraiden #racingagainsttime #uba5 #warrior #specialneeds #nonverbal
Just making some G-tube pads for a local hospital #gtube #gTubePads #GtubeBaby #GtubeLife #AccessibleSewing #AccessibleAccessories
Update: in short, I’ve been going through some medical things. I got some news that I’m processing and the possibility of life altering changes that aren’t too far down the road. With trying to keep confident and logical, probably some shock guarding my emotions and questions swirling, I asked these questions in a support group on Facebook in hopes to connect with people who have gone through something similar. It was successful and encouraging. But I tapped into something else: others looking to connect about our similarities and others seeking encouragement as I’m a testament of success. With this reminder and epiphany, I posted again in this group, this time welcoming those who’d like to, to reach out to connect, to vent, to hear my story, to feel some encouragement and see some light. The responses have been overwhelming. I realized I could make an impact by just sharing my story and bringing positivity from a survivor. So, I’m thinking about starting. Blog/vlog. I’ve never done something like this and I’ve never shared much about what I’ve gone/go through with my condition. But something tells me I’m meant to do this. I’ve been brought to tears multiple times today by people, especially mother’s thanking me for sharing and wanting to follow my journey and hear my story so that they and their little ones have hope. Anyway, I guess I’ll be putting updates soon. I welcome suggestions on Blog Names 😅. I’m very nervous but so inspired. I’ve always wanted to help people in some way and this is tugging on my heart. #esophagealatresia #ea #tof #rarecondition #raredisorder #birthdefects #bornunabletoswallow #gtube #feedingtube #hope #inspiration #encouragement #atresia
Preemie of the Day: Meet the amazing Arlo!! Arlo was born at 27+3 weeks, weighing only 1lb 8oz he had his ups and downs whilst in NICU as any other preemie would. He spent 90 days in hospital and came home a week before Christmas day! Arlo came home on oxygen for a number of months since being on CPAP for a good while and being ventilated twice. He has a PDA and CLD. But is now thriving at home and oxygen free! being a cheeky chap and keeping his parents busy. His parents couldn’t be prouder of him and his journey so far!💙 #preemies #preemiepower #preemiestrong #preemiemom #preemiedad #preemiehood #preemietwins #preemiesofinstagram #preemielife #micropreemie #preemies #preemieprincess #nicu #nicunurse #nicubaby #nicumom #niculife #nicu graduate #nicubabies #nicustrong #nicujourney #nicuwarrior #nicuawareness #nicudad #lifeafternicu #nicuparents #fightlikeapreemie #nicusupport #gtube
Make up your gd mind I'm on low blood pressure and high blood pressure meds now because stability..? I hardly know her.. My partner took the first pic after I collapsed and completely KO'd. I keep having these episodes of extreme low and then high. Its scary and painful. #pots #autonomicdysfunction #autonomicneuropathy #saltysister #spoonie #disabilityvisibility #invisibleillness #feedingtube #eds #crps #crpsawareness #potssyndrome #syncope #disabilityawareness #dysautonomia #gtube #tubielife #tubie #hypoglycemia #
This dog 🥰 . Elsie has always been amazing with Joel and last night seeked him out and spent the evening on the sofa by his side ❤️ . She has come to stay for the week and Joel couldn't be happier! . . . . . #joel #elsie #blacklabrador #adhd #medical #trachy #tracheostomy #trachbaby #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #love #instagood #mummyblogger #specialneedsmom #bloggermum #blogger #bloggers #blog #mindingthegapuk
SLP stands for Speech-Language Pathologist. How does a SLP help infants? They are the sucking and swallowing experts!! Morgan is the SLP for KC Infant feeding and has extensive pediatric and neonatal experience with feeding specifically! She is loves helping families navigate complicated feeding challenges and simple ones also! When your baby is struggling to eat it can be incredibly difficult and all consuming. Happy SLP day to Morgan! . . . #feedingtherapy #infantfeeding #SLP #bottlefeeding #bottlerefusal #gtube #slpday
First and foremost I would like to thank EVERYONE who made this happen. This was the most BEAUTIFUL experience EVER… to be surrounded by the love that each and every person has for CHLA. We met some AMAZING families. Would like to give a super special THANK YOU to Team #ethanstrong for their Random Act of Kindness. We truly appreciate you for it. Thank you to my family/friends for being there and just having soooo much fun and showing your love and support for Jacob. Jacob sure was blessed to have his Nino, Nina, primos and Tio’s and Tia’s there. You could DEFINITELY feel Jacob’s presence there and I KNOW he was there walking, singing and dancing along with us. THANK YOU to those who donated. Cristian, Joel and I can’t thank you enough. Now to get ready for next year 😜 Thank You @getinvolvedchla #walkandplayla #walkandplayla2024 #chla #cpwarrior #cpawareness #cerebralpalsy #cerebralpalsykids #cerebralpalsywarrior #1in100 #heartwarrior #hcm #hypertrophiccardiomyopathy #chd #chdwarrior #chdawareness #chdsurvivor #chdaware #heartbaby #gtubebaby #gtube #gtubelife #tubbie #chla #childrenshospital
Living with a chronic illness can be challenging, but here are five tips to help make it more manageable: 1. **Educate Yourself**: Learn as much as you can about your condition. Understanding your illness, its symptoms, triggers, and treatment options can empower you to make informed decisions and communicate effectively with healthcare providers. 2. **Prioritize Self-Care**: Make self-care a priority by practicing healthy habits such as getting enough rest, eating a balanced diet, exercising within your limitations, and managing stress through relaxation techniques or hobbies you enjoy. 3. **Build a Support Network**: Surround yourself with supportive friends, family, and healthcare professionals who understand your condition and can offer emotional support, practical assistance, and encouragement when needed. 4. **Manage Your Time and Energy**: Pace yourself and prioritize tasks to conserve your energy throughout the day. Break tasks into smaller, more manageable steps, and listen to your body to avoid overexertion or exacerbating symptoms. 5. **Stay Positive and Flexible**: Maintain a positive outlook by focusing on what you can control and adapting to changes as they arise. Celebrate small victories, practice gratitude, and explore new coping strategies to enhance your quality of life despite the challenges posed by your illness. 👫 Join the Tubie Movement Community Group on Facebook to connect, share, and support each other's journeys with positivity. https://m.facebook.com/groups/1548730919028433/?ref=share&mibextid=NSMWBT Follow The Tubie Movement on Facebook for the latest updates and stories. 🔗 Links in bio #JoinTheMovement #TubieProject #EDSAwareness #ChronicIllnessSupport #RareDiseaseAwareness #HypoallergenicCare #SensitiveSkinSolutions #MedicalArt #WearableArt #SupportEDSResearch #ShopToSupport #TubieCommunity #BeWildBeWonderful #feedingtube #feedingtubeaccessories #TubeKnowledge #EmpowerYourself #TubieEducation #TubieSupport #TubieJourney #TubieTips #TubieLife #TubeFeeding #GTube #JTube #MedicalNutrition #TubeFeedingJourney #TubeFeedingSupport #NutritionalSupport #healthandwellness