https://go.dojiggy.io/791381/m/jac/Member/Details My beautiful niece, Jacq, is doing a walk-a-thon this weekend to raise money for her conductive education!!!! She would benefit greatly with donations to keep this amazing program running and funded so that she can continue to grow in her physical, cognitive and social abilities!! Your donation would be greatly appreciated!! Any size donation helps support their program! $5 - spiky therapy massage ball $10 - set of cloth beanbags $25 - peanut-shaped gym ball $50 - set of Conductive Education rings $75 - weighted sensory ball $100 - gym ball storage system $150 - adjustable-height Conductive Education slatted wooden stool $250 - gymnastics wedge mat $400 - adjustable Conductive Education plinth $500 - overhead cost of billing Medicaid for one participant for one semester $750 - overhead cost of billing Medicaid for one participant for four weeks of camp $1000 - walker/gait trainer #cfce #conductiveeducation #cognitivegrowth #physicalgrowth #socialgrowth #cerebalpalsy #gtube #quadraplegic #gorgeous #iloveyou #youreperfect
Noviembre 4, El día que renaciste... Mi amado Eric hace un año tu mami y papi tomaron a decisión de someterte a una cirugía para colocarte un tubo gástrico porque estabas muy bajo de peso y comías muy poco, tu peso era tan bajito que era perjudicial para tu salud así que aunque nos doliera mucho tener que hacer esto sabíamos que era la decisión correcta. Esas horas que estuviste en cirugía fueron las más largas de mi vida, rezamos por ti como nunca. Y gracias a Dios la operación fue un éxito. Ese día me entregaron un nuevo bebé, un bebé que ahora se alimentaba a través de un aparato, nos tocó aprender tantas cosas y con amor paciencia y un poco de temor nos hicimos expertos. Teníamos la esperanza que esta sería la solución para que crecieras sanito y así ha sido ! Poco a poco has demostrado que aunque la vida como padres se nos tornó retadora convirtiendonos en Medical Parents tu has logrado crecer y nutrirte. Y eso es lo importante. Aunque el escenario se ha complicado y no fue cuestión de meses como nos dijeron en su momento, sabemos que algún día no muy lejano podremos quitártelo y podrás comer solito. Y tendrás tu barriguita libre de huequitos y tubos. Mientras tanto seguimos protegiendo tu infancia, haciendo que entre todos los feedings, terapias, citas médicas, etc igual disfrutes y tengas una vida feliz. Y lo estamos logrando 🥹 Gracias hijo por ser tan fuerte, por a través de esto enseñarnos tantas cosas. Te amamos y estamos muy orgulloso de ti. Con orgullo llevamos tu gtube que te salvo la vida para crecer sanito y fuerte. #gtube #grateful
Update: Thankfully the dr was able to get the tube in without going to the next more invasive steps. Still was painful for our boy but his tube is back in. Thank you all for the prayers and so thankful this was relatively simple. Just waiting on an X-ray to make sure it is placed correctly then headed home. At the ER with Ethan, his Gtube came out and we are unable to get it back in. We always have been able to get it back in ourselves in the past. Please pray for Ethan 🙏 #russelsilversyndrome #gtube
. #quickshipping 📦📦📦 Order your FreeArm through @wilbosblends in the UK and receive your FreeArm in just a few days! Shop at wilbosblends.co.uk #medicalmom #medicalcaregiver #tubiecaregiver #childlife #medicallycomplex #nicu #nicubaby #gtube #gtubebaby #tubefed #tubie #freearmfan #feedingtubemom #tubiekid #feedingtubeawareness #feedingtube #njtube #freearm #dietitian #childlifespecialist #ngtube #feedingtubebaby #tubefeeding #tubielife #feedingtubelife
Set your ⏰ alarms for 10:00am CST casting call for the Born Abel Father’s Day book for SUPER DADS, SUPER GRANDPAS and SUPER STEP-DADS! This book we will be illustrating 60 medically complex kids and angels, and listing Super Guys in the back of the book ❤️ It will be available late May🩷 #fathersday #medicaldad #medicalparent #medicallycomplexkids #extrachromosome #trisomyawareness #trachbaby #gtube #complexkid #nicubaby #nicuwarriors #nicumom
Look up to the sky and remember you can do hard things. Sometimes things seem impossible to reach, like touching the sky, but the impossible happens every day! Remember that even the smallest steps lead you forward. Taking the next step will eventually get you to the top of the mountain. We at Whole Story Meals are cheering you on, no matter where you are in your journey! #wholestorymeals #blendeddiet #blenderizeddiet #tubieinthewild #gtube #tubielife #realfoodforkids #dysphagia #feedingtube #fedisbest #feedthemrealfood #pureedfood #blenderbottle #specialneeds #specialneedsfamilies #specialneedskids #advocatelikeamother #specialdiet #gastroparesis #medicallycomplex #medicallyfragile #specialneedsmama #chronicillness #spoonie #trachbaby #extrachromosome #specialneedsmom #plantbasednutrition #veganfood #spooniewarrior
Better TOGETHER! The day has finally come! Huge congrats to our good friend Jessica Patay plus all of the other mothers, caregivers and advocates featured in this amazing book. Several of these moms are mejo moms. We so appreciate them sharing their stories. We know first hand that community keeps us together. This book is for all the beautiful caregivers as well as those who know, care and love for someone medically complex. Go buy your copy today. #together #raredisease #rare #medicalmom #gtube #caregivingheroes #unsungherores #hiddeninplainsite #motherhoodjourney
What is your go-to recipe? (📸: @hollybbaking) . . . . . #foodpouch #kidapproved #kidfood #onthego #easymeals #healthyeats #kidlife #toddler #momwin #momapproved #kidfriendly #healthykids #busymom #foodforkids #toddlerlife #momblogger #mombloggers #momblog #mommyblogger #mommyblog #sahm #homemade #feedingtube #tubie #gtube #babylistbabes #babylistbff #dearbabylist #squeasy #squeasygear
SAVE THE DATE! Our Richie Dell'Anno Golf Classic is Friday, August 9, 2024 from 7:00am to 3:00pm at Mercer Oaks Golf Course! Check back for details coming soon! #JARofHope #SpreadHope #penniesforhope #duchennemusculardystrophy #searchforacure #musculardystrophy #DuchenneAwareness #BreakTheSilence #HopeForDMD
New on my Etsy! I made this for a friend and it’s just too cute not to share! #tubie #chronicillness #tpn #gastroparesis #feedingtube #peg #gtube #mcas #ehlersdanlossyndrome #spoonies #eds #intestinalfailure #disability #hospital #neurodiverse #autism #adhd #nj #ng #port #tpn
The zebra set is complete and oh boy do I love it ❤️🦓 #tubie #chronicillness #tpn #gastroparesis #feedingtube #peg #gtube #mcas #ehlersdanlossyndrome #spoonies #eds #intestinalfailure #disability #hospital #neurodiverse #autism #adhd #nj #ng #port #tpn
new video on kendal36! #newglasses #learningaboutfeedingtubes #gtube #mickey #wishihadknown
Head to toe Little Trouble 🤙🏻🖤🌴💀 their newest drop is so freakin good! Can’t wait to get the matching shirt for these boardies! #skatelife #babyskater #toddlerfashion #brandrep #coolkid #actionjackson #gtube #boyfashion #tubie #babyinfluencer #smallshoplove #naturekids #waterbaby #surferdude #babyinfluencer #babiesofinstagram #babysurf dreamlandbabyco #dreamlandsleep
We have an upcoming study for patients who currently use a G tube or NG tube or caregivers for a loved one with a G tube or NG tube. Learn more on how you can make $150 here: https://conta.cc/4bgoayk #marketresearch #research #caregiver #insights #paidstudies #researchstudy #mn #gtube #ngtube #healthcare #health
As a Gtube parent, it is essential to know how to change your child’s Gtube. Weird things can happen and the Gtube can fall out. This happened to us already. I had not yet been trained to reinsert the tube, so I called the office to get an appointment for help. In just two hours, the hole (stoma) where his Gtube is inserted had already started closing! It resulted in a horribly painful procedure for him where the hole had to be manually dilated. I never want that to happen again. It’s important to always have a backup Gtube and be prepared to replace it. Now we both know how to do it! It’s not a painful procedure, but it does feel strange to have something removed from your tummy. Pete is amazingly tough and incredibly brave. He works out harder than anyone I know and “stomachs” medical procedures better than most adults. I love that little guy and am so proud. #gtube #downsybdromeawareness #tubielife #tubefeeding #dysphagia #nursemom #downsyndrome
. We have fun news for our Aussie and New Zealand tubie families! AMSL and NZMS is now InterMed Medical and they are proud to provide the FreeArm to all Tubies down under! They will also work with you to have the FreeArm covered with NDIS funds. 🇳🇿🇦🇺 Contact InterMed today to order your FreeArm! #dmes #amsl #nzms #intermed #aussietubie #feedingtube #tubie #tubiemom #tubielife #tubiestrong #tubesupplies #gtube #jtube #ngtube
Does your child struggle with food aversions? A lot of children with feeding tubes do, and many have a tube because of these aversions. Whole Story Meals is a great option to use as it can be used as tubie nutrition but also as a: - Powder for dipping a finger into. Just touch the powder then lick and it dissolves! - Thin or thick puree to 'paint' with or blow bubbles into - Ice cream when mixed and frozen There are many different options and ways to use Whole Story Meals to make meals enjoyable! Does your child have a feeding aversion? #wholestorymeals #tubielife #gtube #feedingtube #blendeddiet #blenderized #tubefeeding #gjtube #jtube #hospitallife #medicallycomplex #specialneeds #medicallyfragile #blenderbottle #puree #foodasmedicine #chronicillness #invisableillness #smoothie #getoutside #trach #raredisease #nutrition #gastroparesis #extrachromosone #specialdiet #medicallife #guthealth #kidneyhealth #CKD
I am ✨OBSESSED✨ y’all 🤩 Someone ordered a five pack of my Groovy collection and requested it to be cut into strips. It looks SO GORGEOUS in the packaging! Ahhh! I’m so excited for her to receive them! #smallbiz #shopsmall #smallbizlove #smallbusiness #etsyshop #etsyfinds #tubie #tubietape #feedingtubeawareness #ngtube #njtube #gtube #jtube #gjtube #port #portacath #picc #centralline #dexcom #libre #cgm #inclusivity #chronicillness #chronicillnessawareness
Off to school! Someone wanted to be carried this morning! So we grabbed a picture! She was so happy to see her bus again! ☀️✏️☀️✏️☀️✏️☀️✏️☀️✏️☀️✏️☀️✏️☀️✏️☀️✏️☀️ #22q11deletionsyndrome #spinaldisorders #spinalcordstimulator #spinaldecompression #tubie #feedingtube #gtube #epilepsy #epilepsyawareness #epilepsywarrior #22q11 #22qawareness #disability #disabilityawareness #advocate #adorable #advocating #medicalmom
#tubieclip #tubieclips #portcover #jtube #gjtube #gtube #tubiepads #feedingtube #tubiepad #spoonie #tubie #feedingtubeawareness
I like to make sharing platters from time to time so both my kids and I can share together. Yesterday for lunch I made this platter. Even though Mister12 had his blended, it gives him the respect and inclusion to be involved in what he gets blended for his meals. It also allows him to feel more normal in what’s otherwise a highly medicalised life for him. On the platter: Boiled eggs - just set. Soft but not runny. Lettuce Lovely vine tomatoes Avocado Red and green grapes Raspberries Various cheeses. My youngest chose which ones we had. A home baked ciabatta that I sliced sideways and toasted and buttered. I added a few plain to easy with the eggs and some with mashed avocados. Yoghurt and fromage frais. Super yummy and healthy with a good balance of carbs, protein, calcium and plant foods. #blendeddiet #tubielife #gtube #speechdisorder #gastrictube #arfid #epilepsy #autism #adhd #setd5syndrome #lennoxgastautsyndrome #seizures #phf21a #smoothies #blendedtubefeeds #tubefeeds #tubefed #lunchsmoothie #gtubesmoothie #sensoryprocessingdisorder #tonicseizure #tonicseizures #epilepsysucks #feedingdisorder #avoidantrestrictivefoodintakedisorder #healthyfood #brainsurgery #corpuscallosotomy #smorgasbord #sharingplatter
📢 Attention, wonderful customers! 📢 We wanted to kindly remind you of the importance of paying your NDIS orders on time. As a small family-run business, when an NDIS order is placed, we reserve and set aside the items specifically for you. However, if the order remains unpaid, those items go back on the shelf, causing a loss for both our business and other potential customers seeking those items. Please be mindful when placing your NDIS orders and remember that all NDIS invoices must be paid within 2 weeks of placing an order. Your cooperation helps us continue to provide the best service to all our customers. Thank you for your understanding and support! 🛍️ 💙 #NDISOrders #PaymentReminder #SupportSmallBusiness #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
"Why do you suddenly have so many limbs?????? 🤔🐙" - @common_wild . . . . . #parenting #parentlife #motherhood #momlife #parents #foodpouch #kidapproved #kidfood #onthego #easymeals #healthyeats #kidlife #toddler #momwin #momapproved #kidfriendly #healthykids #busymom #foodforkids #toddlerlife #sahm #homemade #feedingtube #tubie #gtube #squeasy #squeasygear
Managed to get a few of the new Covered Tube Pads made up . I have a lot of orders at the moment so have just added all the suitable designs to the website and will update with actual photos of the pads once they’re made! If you want a particular fabric/colour/design, don’t hesitate to contact me - always happy to see what I can source for you. https://tubielove.com/collections/covered-tube-pads #tubielove #gtubebaby #tubefeeding #tubefed #tubepads #gtube #gtubepads #gtubelife #coveredtubepads
Spring pictures from @pediatrust_denhamsprings 🥹💐 #developmentaldelay #specialneedsawareness #cdlsstrong #corneliadelangesyndrome #cdlsawareness #tracheostomy #tracheostomyawareness #trachbaby #trachmom #tubie #tubielife #tubiebaby #feedingtube #gtube #gtubelife #gtubeawareness #limbdifferenceawareness #luckyfin #specialneedsmom #medicalmom #luckyfinproject #smallbutmighty #sophiastrong💜
I’ve been loving the colour blue lately! #tubie #chronicillness #tpn #gastroparesis #feedingtube #peg #gtube #mcas #ehlersdanlossyndrome #spoonies #eds #intestinalfailure #disability #hospital #neurodiverse #autism #adhd #nj #ng #port #tpn
Ben is just over here having a good time✌🏻Every day, this little guy is saying more, doing more, and growing that big personality of his! Meanwhile, Mom and Dad are feeling the pressures of raising three fiercely independent toddlers 😮💨 April was an incredibly BUSY month for Ben. In addition to celebrating his 2nd birthday, he had lots of appointments. >>Surgery follow up - his abdominal scars are healing nicely! >>Ophthalmology - eyes are doing well since his surgery last August. Check up again in 6 months to better assess his functional vision. >>ENT - scheduled to have ear tubes placed in July. >>2 Year Well Visit - doing well overall, but he hasn’t gained any weight in the last 8 months. He’ll gain a little, drop a little. He’s grown taller though, that’s for sure! >>GI - continuing with reflux medication, at least through allergy season. Ben has had congestion/drainage the last two weeks that cause him to cough, gag, and throw up every day. We’re hoping to get through the height of allergy season and get him to take more by mouth and stop throwing up so that he can gain some meaningful weight. >>Orthopedics - hip and leg x-rays look great, no need for orthotics! Add to that about 10 therapy appointments, and that’s Ben’s month at a glance! #BraveLikeBen #heartwarrior #chdawareness #congenitalheartdefect #HLHS #hearttransplant #organdonation #donatelife #twins #feedingtubeawareness #gtube #tubie #medicalmom #heartmom
Colt is scheduled for his g tube closure surgery tomorrow morning at 6:30 am. Please keep him in your prayers. We are praying that surgery goes flawlessly and Colt will have a supernatural peace going into the hospital. The trauma he carries when it comes to the hospital/doctors is heartbreaking. It’s not easy to see your child so scared and having to hand him over for a surgery. Praying this our last surgery and we can enjoy summer g tube free!! 🩵 #coltwiley #surgery #pediatricsurgery #downsyndrome #byebyegtube #gtube #tubiebaby #theluckyfew #upsyndrome #lovedoesntcountchromosomes #downrightperfect #prayers
All of our formulas were created to be delivered either via a pump, gravity feeding bag, or a bolus syringe. If mixing the products with anything, including water, you will need to use a blender to make sure the product is emulsified, especially with using a pump. . . . #tubietipstuesday #gtube #feedingtube #tubefeeding #tubielife #rdchat
Our Mario Bros shenanigans continue! Today, Nick got a really cool Lego set, character socks, and Croc charms from the hospital's Little Wishes program. He also picked out a pair of Mario Crocs that are arriving on Friday. The program lets kids make special requests for items while they are inpatient for a long time. It's such an amazing way to help keep morale in tact. It is really easy to get in a rut of emotions being cooped up in a hospital room. Nick has weened down to 2 liters of oxygen from 20 a week ago. He weened further on another medication that will be turned off tomorrow. Lipids will be run today but will also be turned off tomorrow because we are starting to add olive oil as the replacement. That basically takes care of his lines except for a port for his antibiotics and a feeding pump line. We normally bolus feed Nick through a syringe, but since his volume requirements are so high right now, we are running a continuous pump 24 hours. We will work to get back to a full fat and bolus feeds slowly at home. "Life is just like a game. First you have to learn rules of the game, and then play it better then any one else." Einstein #CHDLife #NicksHeart #HLHS #CHDAwareness #MyCHDwarrior #HeterotaxyLife #IAmTheStorm #gtube #tubefed #heartwarrior #CHDawareness #CHD #CHDkid #CHDsurvivor #singleventricle #halfaheart #heartfamily #heartjourney
Specifically designed for cleaning ENFit connectors, our brush scrubs away residue and ensures the cleanliness of feeding tubes. Say goodbye to worries about contamination and hello to peace of mind! Get your EnClean brush today! Available for purchase on our website, EnCleanTube.com & on Etsy and Amazon. Each brush lasts up to 30 days. . . #EnCleanBrush #gtubelife #gtube #tubie
Do you have Flexible Spending Account (FSA) funds for your medical expenses? We have great news! You can use your FSA debit card for the purchase of a FreeArm through our website! Thank you @raaach2402 for sharing about your recent purchase using your FSA card! #fsa #medicalexpenses #tubefeedingsupplies #medicalsupplies #feedingpump #feedingtubelife #tubielife #tubefeeding #ngtube #freearm #pumpfed #wheelchairlife #njtube #feedingtube #specialneedsjourney #feedingtubeawareness #freearmfan #tubie #tubefed #gtube #medicallycomplex #feedingtubes #wheelchair #pumpfeeding
Been a while since I introduced myself . I’m Jasmin the owner of Jasmin Victoria Photography. I am a mom of two boys. I’ve been photographing babies for 6 years and extremely grateful to be doing what I love. I try my best to create a safe space for moms to share their story and vent with me. This is a judgement free zone because we all need for someone to just listen . I look forward to working with you ! #babyphotography #babyphotoshoot #babyfever #monday #photography #photoshootideas #newyorkphotographer #newbornphotography #newbornphotoshoot #queensnewbornphotographer #nycnewbornphotographer #nynewbornphotographer #nynewbornphotography #brooklynnewbornphotographer #autismawareness #feedingtubeawareness #gtube #tubielife
DREAMLAND BABY MOTHER’S DAY SALE 🌜🩵 •Purchase a sleep sack — and receive not one, but TWO free bamboo pjs with your order! • Shop our link in stories AND use code “AFFILIATEPJBOGO“ for discount to be applied 💴 Promotion valid for today and tomorrow ONLY! #skatelife #babyskater #toddlerfashion #brandrep #coolkid #actionjackson #gtube #boyfashion #tubie #babyinfluencer #smallshoplove #naturekids #waterbaby #surferdude #babyinfluencer #babiesofinstagram #babysurf dreamlandbabyco #dreamlandsleep
Our first family photos… We never did newborn photos, we never had time. We were so busy trying to just survive. I didn’t expect to feel all the feels looking at these amazing photos. These past 6 months we have become a different family. We are not longer surviving- we are THRIVING! 🖤🖤 🖤💙 𝐿𝑒𝒶𝓇𝓃𝒾𝓃𝑔 𝓉𝑜 𝒹𝒶𝓃𝒸𝑒 𝒾𝓃 𝓉𝒽𝑒 𝓇𝒶𝒾𝓃 #mommasboy #rocky #love #justmissingthedogs #medicallycomplex #strongAF #tubefedding #gtube #malrotation #meckelsdiverticulum #SAHM #workingfulltimefromhome #caregiver #stubborn #fighter #sleepapnea #allthespecialists #chromosomeabnormality #unknowndisagnosis #onetoughmf #grateful #oxygenfree #ivig #infusions #lowtone
Sometimes, being out of the hospital bed and sleeping on the couch feels more comfortable and like home. We are still moving forward and making progress. We weened down on a medication and stopped another. Nick continues to walk the halls, and we are also tackling strength training for steps. He also got fitted for custom orthotics we will be trying on Wednesday. There are still whispers of discharge being next week. We have unfortunately done this too many times and know that we need to stay on top of everything to avoid adding unnecessary time in the hospital. Every day, we all superstistiously knock on a wooden PT chair Nick uses so that we can stay on track to break outta here soon! #CHDLife #NicksHeart #HLHS #CHDAwareness #MyCHDwarrior #HeterotaxyLife #IAmTheStorm #gtube #tubefed #heartwarrior #CHDawareness #CHD #CHDkid #CHDsurvivor #singleventricle #halfaheart #heartfamily #heartjourney
This cutie and her sass are something else. This picture was from 2 weeks ago when she was throwing some sass at her not only mom and dad but her teacher too. Good thing we all secretly find it amazing! Since Emma wasn’t “suppose” to show any emotion let alone sassiness 😝. In this moment she was caught in all her sass. Dad asked if she loved him and she replied no with her eye gaze, then asked about mom and Red she replied with her eye gaze no to us too. But then he said so do you love your sister and she replied yes with this little smirk. She knows exactly what she’s doing little stinker! . Since this moment 2 weeks ago Emma was diagnosed with a UTI and was showing that it was taking a toll on her body. She started to throw up again, very very sleepy and seizures that we haven’t seen in awhile. Got her on antibiotics again finally on Saturday and things are looking up. Started on pedialyte again and hoping to move to 50/50 with formula tomorrow. Praying we can get through this and get back to increasing formula to get this picc line out! I want my sassy girl back! . #Embracelifeemma #lissencephaly #epilepsy #smoothisbeautiful #smoothbrain #nevergiveup #blessed #neversaynever #cbdoil #qualityoflifematters #rare #cannabismedicine #bestrong #bebrave #beyou #inspire #creatememories #cvi #cp #gtube #awarenessiskey #specialneedssiblings #specialneedsfamily #specialneedsvlogger #specialneedsvlog #vlogger #blogger #PAFAH1B1 #17p13.3 #vesicostomy
(1)Here is another update of what’s been going on since March 5, 2024 I HIGHLY HIGHLY HIGHLY (I cannot stress this enough) HIGHLY recommend you read the update on my go fund me as that will have WAY more information compared to this post! Here is a synopsis: -started having projectile drainage from around my j tube (NOT MY TUBE BUT FROM THE STOMA THE ACTUAL HOLE AROUND THE TUBE) that hurt horribly and kept getting worse and worse - no one believed me (doc) until a nurse tracked down my doc and forced them to look at my pictures - had a perforated small intestine for 10 days without any intervention and was told that I was drug seeking (once they figured out that my bowl was perfed they quickly changed the tune to their voice and started giving me pain meds as this is a very painful and dangerous thing) -was on antibiotics for a couple of infections -had emergency open abdominal surgery to repair my small intestine and redo the entire j tube process -after abdominal surgery I was in recovery for 6 hours and was in so much pain so was put back to sleep for the night(too high of heart rate) -still in agonizing pain (even this second) and can do very little -had horrible nurses (did have some AMAZING nurses) who denied me medicine and would yell at me and made me feel so unsafe I had to record every time that nurse walked in -threatened to sign an AMA form if they didn’t discharge me because i could do a better job than them at home -after a month long admission with horrible memories I was discharged at the end of March Please please go read the full story on go fund me it’ll be the update that starts talking about 3/5/2024. Please keep sharing my go fund me to educate people of how much a person has to struggle to get basic patient rights. The go fund me link is in my bio 🤍 #gastroparesis #jtubepain #jtube #gtube #feedingtubes #intestinaldysmotility
Flat out since 8.30pm 😴😴😴 . . . . . #Joel #ADHD #melatonin #medical #trachy #tracheostomy #trachbaby #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #love #instagood #mummyblogger #specialneedsmom #bloggermum #blogger #bloggers #blog #mindingthegapuk
Absolutely love this themed tape, thanks for sharing it in use! I’m in burnout right now so I’ve taken the weekend off and today off but I aim to be back tomorrow! #tubie #chronicillness #tpn #gastroparesis #feedingtube #peg #gtube #mcas #ehlersdanlossyndrome #spoonies #eds #intestinalfailure #disability #hospital #neurodiverse #autism #adhd #nj #ng #port #tpn
Interested in volunteering? We’re looking for passionate individuals to help plan and coordinate local fundraisers. At JAR of Hope we have a variety of ways for you to get involved. Have some great ideas and want to jump in with both feet? Participate in a committee. Only have a few hours to spare? Stop by our next fundraiser and help at the signup desk. We look forward to hearing from you! Visit www.jarofhope.org/volunteer to join now! #JARofHope #savethefirstchild #duchennemusculardystrophy #searchforacure #musculardystrophy
If you've considered real food for your child's (or your own) tube feeding, you'll want to give this podcast episode a listen! Shanna (@wellnessforthewin) is a registered dietitian and mom of two adorable boys. Her 11 month old has a Gtube and has been on continuous feeds pretty much since he got his tube. She had me on her podcast and we had a great discussion about the common digestive issues people with feeding tubes often struggle with, and how real food has helped countless families finally get some relief. 🧡 Expect to learn about the amazing benefits of real food, how you can get started and test things out, practical tips like which blenders and equipment are most popular, and so much more 🙌🏽 Whether you are a parent of a tubie, have a tube yourself, or you're a caregiving or provider who could benefit from this knowledge, I encourage you to give this a listen and share with anyone who might need it! 🫶🏽 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
Here is Part 4 and the final post honoring our April #TubieHero, Jasmine Sturr. 💜 "After going through the Patent process for StomaEase, we met Martin von Dyck at the Oley Foundation conference. He was excited to hear about StomaEase and became our partner in this journey to get it on the market. Together, we developed the StomaDisc system to go with StomaEase, and we will keep inventing new and innovative solutions to improve the lives of people living with feeding tubes. These pictures are from the ASPEN conference, the official launch of StomaEase! . . #FeedingTube #Tubie #TubieLife #gtube
The coolest kid I know 🥹🤍✨ #periventricularleukomalcia #cerebralpalsy #dystonia #epilepsy #infantilespasms #medicalmom #visionimpaired #preemiestrong #preemiemom #nicubaby #nicumama #nicustrong #disabilityawareness #littlebugsjourney #nolanstrong🤍 #disabilityadvocate #blindnessawareness #gtube #inclusiveclothing #gtubeawareness #tubefeeding #readysetromper
Zayn is showing no signs of aversion, he’s knocking his feeding sessions out of the park. He doesn’t like baby food much or cereal mixed with his formula, he likes yogurt and big boy apple sauce like his brothers 😂 That face says it all 😍 #shortbowelsyndrome #gtube #fighter #strong #7monthsold #babyboy #boymom
Out of her procedure we will have results tomorrow 💖 making sure she doesn’t get sick anymore from all the meds. Thanks everyone for all the messages! #spinalmobility #spine #spinaldisorders #veins #22q11deletionsyndrome #22q #tubie #feedingtube #gtube
Wave Rider 🌊 As it warms up here we are getting so excited for summer and all of the adventures to be had 🤙🏻 Snapback: @binkybro (shop our link in highlights) Tee: @thelittleradthings (ACTIONJACKSON) Shorts: @lala.and.cruz (ACTIONJACKSON) Presets: @themagsocial (ACTIONJACKSON) #skatelife #babyskater #toddlerfashion #brandrep #coolkid #actionjackson #gtube #boyfashion #tubie #babyinfluencer #smallshoplove #naturekids #waterbaby #surferdude #babyinfluencer #babiesofinstagram #babysurf
Finally got some good pictures of these Itzy Ritzy backpacks, showing how they’ll be modified, and work with each pump. The Infinity pump can also go in the front pocket; but it makes the mesh pocket a little less useable. #feedingpump #gtube #tubie #feedingtube
. #friendlyfaces Thank you for sharing this photo with us @braunschweiger_sandwich! #tubiebaby #medicalmom #childlife #medicallycomplex #nicu #nicubaby #gtube #gtubebaby #tubefed #tubie #freearmfan #feedingtubemom #tubiekid #feedingtubeawareness #feedingtube #njtube #freearm #dietitian #childlifespecialist #ngtube #feedingtubebaby #tubefeeding #tubielife #feedingtubelife
#tubieclip #tubieclips #portcover #jtube #gjtube #gtube #tubiepads #feedingtube #tubiepad #spoonie #tubie #feedingtubeawareness
🎉 Did you know that you can now shop all your favourite Tubie Fun products at HECSA and Surgical House?! 🛍️ Whether you're looking for medical supplies or our adorable Tubie Fun accessories, you'll find everything you need at these trusted distributors. Head over to HECSA and Surgical House today to explore our range and stock up on essentials. Happy shopping! https://surgicalhouse.com.au/ https://hecsa.com.au/ #TubieFun #MedicalSupplies #Distributors #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
Feliz dia internacional da Síndrome de down,principalmente a minha linda Soso 🤗 te amamos grandemente meu amor 😍 “Por que o amor não conta cromossomos”❤ Diga não ao preconceito!! #sindromededown #down #cromossomodoamor #babydown #downwithjax #downsyndrome #downsyndromeadoption #adoption #t21 #presents #christmas #sofun #howdidwegetsolucky #gettingspoiled #downsyndromeawareness #gtube #tubiebaby #chdwarrior #homiewithanextrachromie #babyboy #babylove #babytoes #babiesofinstagram #childhoodunplugged #toddlersofinstagram #downsyndromerocks #downsyndromelove #upsyndrome
Preemie of the Day: Meet the handsome and wonderful Kareem!! Kareem was born at home unexpectedly at 22 weeks and 6 days. He spent 180 days in the NICU where he received an extensive amount of care. Today Kareem is 6 years old and thriving. 💜💜💜 #preemies #preemiepower #preemiestrong #preemiemom #preemiedad #preemiehood #preemietwins #preemiesofinstagram #preemielife #micropreemie #preemies #preemieprincess #nicu #nicunurse #nicubaby #nicumom #niculife #nicugraduate #nicubabies #nicustrong #nicujourney #nicuwarrior #nicuawareness #nicudad #lifeafternicu #nicuparents #fightlikeapreemie #nicusupport #gtube
“The most surprising and downright shocking 🥺 fact I learned while getting my Holistic Health Coach certification was how unhealthy my daughter’s tube feed nutrition was… My daughter has been exclusively tube fed from about 2 years old (she’s now 20). There aren’t a lot of options for enteral nutrition, and I honestly never really questioned what was in her formula. Well… This is the top of the ingredient list of one of the formulas she was on: Corn Syrup Solids (52%), Refined Vegetable Oil (Medium Chain Triglycerides (Palm Kernel and/or Coconut Oil) (8%), High Oleic Sunflower Oil (6%), Sunflower Oil (4%), Canola Oil (4%)). I’m sorry, what 😡? After learning about Functional Formularies during my certification, their story, and the incredible stories of other kid’s nutritional success stories after making the switch, I got Ava on it ASAP. She is now getting nutrition that has organic ingredients from whole foods. The nutritional change in her after making the switch was DRASTIC. It was INCREDIBLE. As a now certified Holistic Health Coach, I am so passionate about paying attention to what we put in and on our bodies. While I don’t expect or even encourage everyone to be extreme in any of this, I simply spread awareness to pay more attention to what you consume instead of reading marketing on packages.” — Lisa L. . . . #foodasmedicine #wholefood #icunutrition #gtube #tubie #feedingtube #rdchat
New product - Covered Tube Pads! I recently had a customer ask for a covered tube pad so whipped up a sample and had Aidan try it out - he gave it a thumbs up! These pads will be larger than my standard pads, approximately 8.5cm diameter and as you can see from my slightly blurry photos, allow the tubing to exit the opening at the side or bottom. Use on their own or in conjunction with of my tubing clips and you have a nice alternative to a feeding belt. I'll be making up some stock in between orders but if this is something you think you'd like, flick me a message and we can discuss fabric options! Covered Tube Pads will be NZD$20.00 each. #tubielove #gtubebaby #tubefeeding #tubefed #tubepads #gtube #gtubepads #coveredtubepads
My miracle baby Donovan born at 23 weeks ! Autistic and G tube fed he doesn’t let anything stop him. He is the strongest person I know . So grateful to be his mom #MaternityMagic #AwaitingArrival #babyphotography #babyphotoshoot #babyfever #monday #photography #photoshootideas #newyorkphotographer #newbornphotography #newbornphotoshoot #queensnewbornphotographer #nycnewbornphotographer #nynewbornphotographer #nynewbornphotography #brooklynnewbornphotographer #autismawareness #feedingtubeawareness #gtube #tubielife
ou can help us #savethefirstchild. Donate today! ➡️ JARofHope.org ..... #JARofHope #penniesforhope #duchennemusculardystrophy #searchforacure #musculardystrophy
Check out my very first book which was inspired after creating this account and the daily content shared!! Our Preemie Adventure chronicles the journey that premature children and parents go through in the NICU. The book takes a humorous and heartwarming look at the milestones these children achieve as they work toward going home. If you purchase or have purchased any of my books please leave a review online!!! Book link: Our Preemie Adventure https://a.co/d/dIQs5g4 #preemies #preemiepower #preemiestrong #preemiemom #preemiedad #preemiehood #preemietwins #preemiesofinstagram #preemielife #micropreemie #preemies #preemieprincess #nicu #nicunurse #nicubaby #nicumom #niculife #nicugraduate #nicubabies #nicustrong #nicujourney #nicuwarrior #nicuawareness #nicudad #lifeafternicu #nicuparents #fightlikeapreemie #nicusupport #gtube
New glasses and new ‘do for our little Rockstar! 🤓🤘🏻🤩 He’s *finally* feeling better and back to his smily self after surgery. #BuddyHolly #mohawk #curlymohawk #ONH #CVI #gtube #tubielife
I’m having an explode all over me kinda day. How’s yours going..? 😒🙄🤣 #blendeddiet #tubielife #gtube #speechdisorder #gastrictube #arfid #epilepsy #autism #adhd #setd5syndrome #brainsurgery #lennoxgastautsyndrome #seizures #phf21a #smoothies #blendedtubefeeds #tubefeeds #tubefed #gtubesmoothie #sensoryprocessingdisorder #tonicseizure #tonicseizures #epilepsysucks #feedingdisorder #avoidantrestrictivefoodintakedisorder #healthyfood #snacksmoothie #blender
Our precious, tiny baby🤍 With Beaux’s first birthday coming up, we’ve been talking a lot about last year and everything we’ve been through. It’s been difficult reliving the feelings again. I’m not sure my body even understands it’s a memory. I FEEL it so strongly, like it’s happening all over again. • • • • • • • • #watchbeauxgrow #nicu #nicubaby #nicumom #micropreemie #preemie #26weeker #preeclampsia #preeclampsiasurvivor #prematurebabyawareness #premature #gtube #gtubebaby
Entered into the world of melatonin! . Joel's sleeping pattern has been all over the place for a while with very late nights and late mornings. This hasn't helped the increase in behaviour and school refusal as everything is a rush in the morning - and the pressure triggers his meltdowns. . The hope is that he sleeps earlier, and gets up earlier, giving him more of a relaxing start to the day 🙏. In turn, the hope is that it curbs some of the behaviours. If not, we will trial ADHD medication to see if that helps. . Alot of Joel's difficulties may not be helped with medication but more changing the environment around him to one that is more suitable e.g. school. . Let's see where we are in 3 weeks time! . . . . . #Joel #ADHD #medical #trachy #tracheostomy #trachbaby #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #love #instagood #mummyblogger #specialneedsmom #bloggermum #blogger #bloggers #blog #mindingthegapuk
The plan was that I would feed Dillon in the car while Mike and Ava went to play catch on the field. I noticed about one minute into Dillon’s feed that the pump battery was low - rookie mistake. As slight panic started to set in (hungry tube fed baby + no power = trouble), we headed to the box office to ask for the nearest wall outlet. On our way, we walked by two people with Down syndrome. 💙💛 “Deep breaths. It’s going to be ok,” I tell Dilly, who stares at me unamused, wondering where his lunch is at. At the box office, a manager kindly let us in the back to plug in. As we waited to charge, an employee stopped to say hello. She shared that her child was tube fed, too! I felt an immediate kinship - she understood tubie life and the struggles. We chatted about Dillon and his journey, and she shared that her daughter passed away at the age of 12. I became so overwhelmed with sadness for this woman and her little girl that I completely lost my composure. I was now standing in the box office of a baseball stadium, charging my son’s pump, tears streaming down my face. I apologized and felt embarrassed that this kind stranger was now comforting me after what she went through. She graciously gave me a hug and showed me the tattoo she has for her daughter. I don’t know how to repay people like this who unselfishly offer support and share their stories, so I can only pay it forward somehow. It’s crazy to think that we were here a year ago and Dillon was in my belly (last photo). We had no idea about his diagnosis at the time, and now here we are. While life throws some curveballs, it forces you to take nothing for granted. ⚾️❤️💙💛 #dontworryaboutathing #everylittlethingisgonnabealright #nothingdownaboutit #downsyndrome #tubielife #gtube @dillon_the_lyonhearted @thestrongertrees
Admission Open B.E. & D2D - Computer, Computer Science, Information Technology, Mechanical & Civil - Strong industry connections for internships and placements - CoE of SAP & AWS - 100% Placement Assisstance - Cutting-edge labs for hands-on learning - Vibrant student organizations & clubs for leadership development like GDSC, AI/ML, WTM, AWS, MLSA, Codder's Club - Experienced faculty with industry insights - Internship and co-op programs for practical experience For Any Query regarding Online Admission Process ACPC Help Center is available at our Institute. Address ----------------------------------------------------------- SHREE SWAMINARAYAN INSTITUTE OF TECHNOLOGY Nr. Agora Mall & Indira Bridge, Sardar Patel Ring Road, Bhat Circle, Ahmedabad Airport- Gandhinagar Highway, Bhat, Ahmedabad Mobile No.: +91-9408260607, +91-7043609281 Website.: http://ssit.co.in/ Facebook.: https://www.facebook.com/ssit.gandhinagar/ Instagram.: https://www.instagram.com/ssit.gandhinagar/ Map.: https://maps.app.goo.gl/h1FkirGQyRUwUNcw7 College Information Video: https://youtu.be/MdQcKkZGqdw?si=ikjvjjJtw_WcDqts #SSIT #SSITBHAT #SSITGANDHINAGAR #ENGINEERINGCOLLEGE #BESTENGINEERINGCOLLEGE #BESTENGINEERINGCOLLEGEINAHMEDABAD #BESTENGINEERINGCOLLEGEINGANDHINAGAR #COLLEGELIFE #ENGINEERING #ENGINEERINGAHMEDABAD #ENGINEERINGGANDHINAGAR #COMPUTEENGINEERING #IT #COMPUTERSCIENCE #CIVIL #MECHANICAL #PLACEMENT #PLACEMENTASSISTANCE #SAP #AWS #GTU #GTUBE
This pattern has taken over as my new favourite design. I think this may have to become a full set 🙈 #tubie #chronicillness #tpn #gastroparesis #feedingtube #peg #gtube #mcas #ehlersdanlossyndrome #spoonies #eds #intestinalfailure #disability #hospital #neurodiverse #autism #adhd #nj #ng #port #tpn
Leaving the hospital with one less tube in my nose and four more holes in my stomach. Hoping for a swift recovery 🙏 #chronicillness #tubie #tubielife #gtube #surgery #pegtube #hospital
This cherry print is now available as a tubie pad, port cover, and tubie clip. #tubieclip #tubieclips #portcover #jtube #gjtube #gtube #tubiepads #feedingtube #tubiepad #spoonie #tubie
"We are big Tubie Fun fans! 🥰" Thank you again for sharing your feedback and photos! We love seeing our products in action and hearing about the difference they can make in your life! 💕 #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
Mister Wheels working on escaping the building pre-Nutrition appointment. All went well 🙂 We're going to make a small change to Malachi's regular food to try to up the calcium content. Hopefully 🤞🏻 If we can manage it without some surprising allergic response #nutrition #dietician #wholefooddiet #blenderizeddiet #formula #feedingtube #gtube #malacw