#feedingtube

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Watermelon loving baby and chocolate cake loving toddler 😍 #novaelizabethblack #feedingtube #tubie #jackblissblack #summerlove #foodies
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So I was doing some research about gastroparesis because one of my characters suffers from it along with many other health issues. And I stumbled upon this YouTube channel called Chronically Jaquie, and I've been binge watching her videos for a few weeks now. Just a few days ago it was her and her husband's anniversary so I decided to draw them. Neither of them ended up looking like them tho. Still, I'm pretty happy with how it turned out. Thanks Jaquie for educating so many people about chronic illness, and thanks for giving me inspiration! - - - #drawing #art #digitalart #chronicallyjaquie #chronicallyjaquie2018 #youtuber #chronicillness #gastroparesis #feedingtube #wedding #love #sorryforthetoomanyhashtagslol #keepmovingforward
Wishing a Happy Father’s Day to my forever leading man! Thank you for always being there for me and showing me what it truly means to be a father and a man of God. No, manliness doesn’t mean being handy around the house, building things, and taking out the trash (although we appreciate that too); It isn’t measured by how many hours you work or how many pounds you can lift. You have shown me that being a true man and father means laying down your ego to connect to your children on their level. . So thank you to the man who painted my nails, wrote stories and songs for me, taught me to garden, spent hours putting curlers in my hair, coached my soccer team, built me a set of monkey bars in the backyard, dressed to match every one of my Halloween costumes, taught me to ride a bike, escorted me to my favorite musicals, taught me to fish and boogie board, helped me sew clothes for my dolls, attended every one of my gymnastic shows and band concerts, bandaged up every scrape I ever got, carried me into bed every time I pretended to fall asleep in the car, pushed me on every swing I could find, and always, ALWAYS, fostered my love of art and creativity I feel lucky to have had you as a father all these years, and hope only that one day, if I decide to adopt children, that their father is half as wonderful as you are ❤️ . . . . . . . . . . #chronicillness #ehlersdanlossyndrome #dysautonomia #hsd #chiarimalformation #peoplehopetribe #spoonie #mastcell #spoonielife #fathersday #feedingtube #chronicpain #zebrastrong #recovery #intracranialhypertension #butyoudontlooksick #spinalfusion #raredisease #invisibleillness #gastroparesis #invisibledisease #fragilebutunbreakable #spinalfusionsurgery #brainsurgery #healing #hope #addisonsdisease #adrenalinsufficiency
New mask on the shop now!! Love staying home and crafting? This is a fun way to show your love for your hobby! Link to shop this mask is in our bio ;)
To the best daddy in the whole wide world, Thank you for doing everything a normal daddy does, and more. Thank you for making me smile and laugh, even though I've just lashed out at you and hurt you because you've had to hold me down for yet another nasty procedure at the hospital or helping look after me when mummy needs to pass a new tube, fit a new monitor or take my blood. Thank you for not passing out and manning up when you have to help with the squeamish stuff 😜 Thank you for making me laugh until my tummy hurts, despite me screaming that I hate you only ten minutes before because i had just had an hour long sensory melt down. Thank you for cuddling me for hours on end and walking for miles with me because I'm scared of what is happening to me and I don't understand. Thank you for being silly and making everything seem perfect and fun even though I know you and mummy are struggling. Thank you for picking up the pieces when I know deep down inside you are falling to pieces too after sending me for yet another operation or receiving bad news. Thank you for being patient with me and trying to figure out new ways to communicate with me when I'm having a bad day. Thank you for throwing all the typical parenting books out the window and thinking outside the box and realising not one sits fits all. Thank you for working yourself into the ground to help provide the best you possibly can for us, even when your exhausted. And thank you for seeing the silver lining to everything and seeing me as a blessing and feeling super proud of me for every little thing I do. I know mummy thinks you're a big kid and you drive her up the wall, but I think you're the best person ever and I'm so glad you are my daddy. Happy Father's Day to the biggest kid of us all. I love you to the moon and back. Love Isla xxxx #fathersday #daughter #daddydaughter #girlsfirstlove #firsttruelove #daddysgirl #specialneedsdads #specialneedsfamily #feedingtube
This just made my whole week! 😩😩😍😍😍😁😁😂😂💚💚💚💚💚 #Rosstheboss #pure #love #joy #laughter #able #DandyWalker #feedingtube
Working on my computer programming homework. Not going to let anything stop me from accomplishing my goals 💪
"The guys who fear becoming fathers don’t understand that fathering is not something perfect men do, but something that perfects the men." – Frank Pittman . . . . . #FathersDay #FathersDay2018 #dads #dadsday #ilovemydad #thanksdad #bestdadaward #mydadhero #foodpouch #kidapproved #kidfood #onthego #easymeals #healthyeats #kidlife #toddler #momwin #momapproved #kidfriendly #healthykids #foodforkids #toddlerlife #momblog #homemade #feedingtube #tubie #squeasy #squeasygear
Welcome to the family Theo >> #sheprador #shepradorpuppy #puppy
We like to believe that. 📷: @haylsa #chronicloveclub
I may be sick, but I will always do my best to support my friends. Absolutely 💩 right now but I'm glad I went anyway. Hopefully the doctor will call tomorrow morning and we can place a new tube immediately so I don't have to miss tomorrow's appointment 🤞🤞
Oh, just Maddison sporadically following instructions to find her toes and her head. And to whoever got to see the instastory video, I formally apologize for my Mom-voice-squeal 😂 It was very exciting, because that’s kinda a big deal for this little girl! . . . #specialneedsmom #specialneedsjourney #medicalmama #medicalmom #momlife #mommyhood #momsofinstagram #honestmotherhood #motherhoodinspired #thisismotherhood #motherhoodunplugged #bekind #babygirl #babytoes #hypotonia #neurological #gtube #gjtube #jtube #tubie #tubiebaby #tubefed #tubefedbaby #feedingtube #medicallycomplex
Mon p'tit amour ce matin qui s'en allait réveiller ses frères en traînant son poteau de gavage 😯😭😭 #gavage #morningfeed #tubiebaby #feedingtube #moncoeurfond #jelaime
Does your tubie love summer? Does your tubie love anchors? We have just the thing for them. Each is available individually or in the pick your own pack. https://www.etsy.com/listing/618503189/anchors-collection-of-6-button-buddiesj?ref=shop_home_active_49 #buttonbuddies #buttonbuddy #medicalsupplies #jtube #gtube #feedingtube #tubefeeding #tubefeed #anchor #collection #smallbusiness #smallbusinessowner #smallbiz #smallbizowner #kittiekatscrafts
We love all abilities playgrounds. Today Dusty went on this swing and stayed on it for almost 1 hour while her mumma and dadda took shifts pushing. It was so nice that she could have fun without it hurting. #allabilitiesplayground #allabilitiespark #botanicgardens #kidswithdisabilities #kidswithspecialneeds #specualneedskid #oishim #tubie #feedingtube #gtubebaby #autism #sensoryplay #asd #autismpride
Shameless selfie since I got dressed today and that is a huge accomplishment! 😂 . 🦓 I am so honored to have been a part of the 3rd Annual CSF Symposium today at Brown University. It was such an incredible privilege to have the opportunity to listen to all of the world renowned physicians and presenters and hear how tirelessly they are all working to better treat, understand, and diagnose EDS and its co-morbidities! It was especially interesting for me, as a patient, to hear how things are viewed from the standpoint of each of the respective specialties (even veterinary medicine!). 💗(Shoutout to my therapist Trish for the invitation and including me in her presentation)💗. If I learned anything today (which I most certainly did), it’s that there is a LOT of HOPE out there for us. We are closer now than ever to some major medical breakthroughs, the excitement in the room was palpable, and I just feel so humbled to be a part of it. Do not lose faith you guys, EDS is not being ignored. Research is taking place, and new discoveries are being made every day. (And now I get to finally curl up in a ball and not get up for a few days 😂 The struggle is real, but the hope is even more so.) . . . . . . . . . . #chronicillness #ehlersdanlossyndrome #dysautonomia #hsd #chiarimalformation #peoplehopetribe #spoonie #mastcell #spoonielife #csf #feedingtube #chronicpain #zebrastrong #recovery #intracranialhypertension #butyoudontlooksick #spinalfusion #raredisease #invisibleillness #gastroparesis #invisibledisease #fragilebutunbreakable #spinalfusionsurgery #brainsurgery #healing #hope
The first day of staff training has been one fun adventure! I am so excited to be the assistant director this summer! It maybe a hard summer physically but I am ready for one amazing summer helping girls grow in courage,confidence, and character! #spoonie #chronicillness #chronicallyfabulous #chronicillnesswarrior #warriors #invisableillness #chronicallyawesome #feedingtube #tubie #livinglife #strength #loveyourself #fight #follow #followme #doctorsappointment #summer #summertime #summercamp #summeradventures #girlscouts #wip #thehumbleabode #gastroparesis #fight #fighter #epilepsy #campfriendsarethebestfriends
Does your tubie love summer? Does your tubie love fireworks? Does your tubie love the USA? We have just the thing for them. Check out this "Red, White, and Blue Fireworks Button Buddy". You can buy it by itself or with others in the "Pick Your Own Pack" https://www.etsy.com/listing/604775124/redwhiteblue-firework-button-buddiesj?ref=shop_home_active_11 #buttonbuddies #buttonbuddy #medicalsupplies #jtube #gtube #feedingtube #tubefeeding #tubefeed #usa #redwhiteandblue #4thofjuly #etsy #etsyseller #smallbusiness #smallbiz #smallbizowner #fireworks #fireworks 💥 #fireworks 🎆 #fireworks_lovers #KittieKatsCrafts
my dogs are the only thing that help with and seem to understand my pain, loneliness, isolation etc. i'm struggling bad and it feels like no one gets it. actually, i know that no one gets it by their actions. without my dogs i'd leave for a better place. I have a surgery monday and its the worst one (happens every year) where i have to have an endoscopy without sedation (it doesnt work) and have a tube bumper pulled out of my stomach through my mouth and another placed, then have the outside tube pulled out and a new one connected. then i get to wait a few days and have another tube threaded further into my intestine, to bypass my stomach so i don't vomit all my pills and fluids- also without sedation. now do you understand why i'm struggling? why i'm irritable, anxious, and don't want to be isolated anymore- but i also really don't want to be around people. Skylar and Kayden are the best thing that i have. our souls connect. they know whats going on without me having to explain. without people trying to relate when they can't. no one-upping. this season of my life sucks and i wouldn't wish it on anyone. #chronicillness #portacath #porphyria #feedingtube #realtalk #countyourblessings
Chilling under a giant mushroom, as you do. Either that, or I took the wrong pill. What else do you do when it’s hot and humid in DC? I thoroughly enjoyed the “No Spectators: The Art of Burning Man” exhibit at the Renwick Gallery this afternoon. Also got a kick out of teaching my parents about the *culture* of Burning Man. Now that I think about it, that may have been the best part... #burningman #shrinking [Image Description: Maria sits in her wheelchair, looking up at a giant glowing mushroom sculpture. The sculpture emits a red light into the room.]
A moment to rest after a hectic week. Five doctors appointments and two varying opinions from two separate hospitals. Not sure where the next weeks will lead us. I know we are looking at another surgery and another inpatient stay, just waiting for the calmness to wash over me and decide where we go. . . . . . #gtube #gjtube #gtubebaby #medicallycomplexchild #feedingtube #sixthbaby #preemie #specialneedsmom #breastfeeding #tubefeeding #breastfeedingmom #breastfedbaby #specialneedsjourney #medicalmama #momlife #momsofinstagram #honestmotherhood #bigfamily #motherhoodunplugged #babynumber6 #babyboy #jtube #tubie #tubiebaby
In honor of all the wonderful Dads, Grand-Dads, Uncles & caregivers in our Community of Hope, we're randomly choosing someone to gift with an entire MONTH worth of #LiquidHope or #Nourish ! Visit our Facebook Page to get contest details and enter!
This journey has brought a lot of opinions. Many people who think they know what’s best for your child. Social media is a wonderful thing. It’s a platform. It’s a way to find people journeying through the same difficult circumstances as you. It’s a way to find support, To bring awareness. But it’s also a way for people to bring negativity and judgement to your life. It’s a way for people to tell you what you should be doing for your child. As a Christian, I seek to be like Jesus daily. I try my best to bring glory to God, regardless of the circumstances going on in my life. I fail everyday but God’s grace is sufficient. The reason I say this is because I wanted to clear something up. My child is still a miracle even though she has been left with medical conditions. My child is not sick because I didn’t say enough prayers. My child still needs a feeding tube, TPN, early intervention therapies despite the many prayers that have been said on her behalf. God isn’t a genie. There’s no magic equation to keep your life trouble free. God doesn’t promise an easy life, in fact- he promises the opposite. “I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” (John 16:33) • • • God is working in Nat’s life. God is using her and me in ways that He would never have the opportunity to if Nat were completely healthy. God has used her pain for good. She is a happy, thriving kid with the amazing intervention of TPN. I have hope that someday she will be done with TPN. I have hope that someday we will have this all behind us. This sucks, it truly does. But I have Hope... “And if not, He is still good.”
Nós não precisamos passar por tudo isso sofrendo. Vamos tornar as coisas mais leves❣️ • We don't have to go through all this with suffering. Let's make things lighter❣️ . . . . #convivendocomdoencasraras #criatividade #sejafeliz #alimentacaoenteral #feedingtube
Mummy’s lil handsome baby boy😘 #feedingtube #burmese #kitty #2yrold
Thankful for all the staff members we crossed paths with today. Thankful for my brother who spent the entire day with me. Thankful I can be there for dad.... and... At this moment thankful to get home and get some rest... it was a long day. #alzheimers #alzheimersawareness #parkinsonsdisease #stroke #feedingtube #facesofcare #hardinmemorialhospital ( #📷 @blissisit5 via @latermedia )
Wearing your heart on your sleeve is like a badge. A really cool, unique badge of honour that says, “hey, you, I love you. And I’m ok being that vulnerable.” 📷: @backpackerstory
No fever yesterday 🙌 Still struggling with terrible pain but so happy I'm moving forward. Thanks for everyone's support on my last post I was so nervous to talk about it. It broke my heart that so many people had gone through similar struggles but I'm thankful we have a place where we can talk about it and find support in each other.
We’ve been trying to figure out what condition Maddison has for a long time now. Well, for her whole life. We know her main issue is in the brain, but doctors don't want to leave the diagnosis as cerebral palsy. Her symptoms just don’t match. There is something else going on. (Well we still don’t even know what her brain is doing - but that’s just a different issue) . We’ve had strong indications that Maddison might have a genetic condition that has caused these symptoms, and we’ve been able to have a Whole Genome Sequencing done on Maddison’s genes thanks to being part of a research study. This test is the most in depth test that can be done on genes - so if it’s genetic, they’d fine it. . We’re 10 months into the study, and I’ve put an update into a blog post. We do know a little bit more about Maddison through this test - but it may only raise more questions. Follow the link in my bio to - “Update: Research Study”, to better understand where we are on the road for a diagnosis for Maddison. . . . #specialneedsmom #specialneedsjourney #medicalmama #medicalmom #momlife #mommyhood #momsofinstagram #honestmotherhood #motherhoodinspired #thisismotherhood #motherhoodunplugged #bekind #babygirl #geneticsresearch #medicalresearch #geneticcondition #gtube #gjtube #jtube #tubie #tubiebaby #tubefed #tubefedbaby #feedingtube #medicallycomplex #developmentaldelay #undiagnosed #disabilities #neurology #thatmomlife
Here’s a screen shot from my shop on the various insulated bag covers. I also have Farrell bag covers. #sewveryfoxy #gtube #gtubebaby # gtubekid #tubie #tubiebaby #tubiemom #tubefed #fedisbest #feedingtube #tubielife #gtubelife #jtubelife #gtubelove #feedingtubebaby #continousfeeds #feedingonthego #etsysellersofinstagram
These three beautiful 500ml #kangaroopump insulated covers are on their way home to their new families. Keeping formula or blenderized meals chilled at a stable temperature all day or night! #sewveryfoxy #gtube #gtubebaby # gtubekid #tubie #tubiebaby #tubiemom #tubefed #fedisbest #feedingtube #tubielife #gtubelife #jtubelife #gtubelove #feedingtubebaby #continousfeeds #feedingonthego #etsysellersofinstagram
Came across this picture of Harry in NICU, can’t believe how tiny he was 😍 Gonna be so strange holding a newborn again when his baby sister arrives, I’m so used to lugging an 18 month old around 😆 #newborn #poorly #baby #boy #chi #hi #NICU #poorlypancreas #NGT #feedingtube #miraclebaby #fighter #love #beautiful
My smallest prince. The completion of my heart. #paxtonnix #my36weeker #feedingtube #soontobenicugraduate #ineedhimhomenow
There are two things I can’t wait for: to get treatment and to be off Prednisone. I’m on day 2 of dropping down 1mg, yes 1 mg, and my joints are on fire and slipping out of socket. May or may have not fallen at work [ok, that’s nothing new😂]. I’ve got nausea, hot flashes, back pain, dizziness, the whole package. See there’s a difference between coming off high dosage steroids for acute issues/inflammatory conditions etc and coming off low dose steroids for adrenal issues. High dosages can typically be tapered in 9 days. For me to taper off 5 mg, it’s going to take me 5 months. That is if my adrenal glands decide to kick in at all. That’s my, I’m-not-a-doctor-so-don’t-quote-me, understanding at least. I’ve been on a lot of meds in my day and had quite a bit of reactions, but coming in second only to being paralyzed, steroids and the dependency they create is one of my least favorite medication “side effects”. That and the obnoxious puffy face. I’ve always had an extra chin or too, but they’ve definitely multiplied along with my cheeks😂. • Day 2 of 30 down [...then repeat 4 more times]. I’ve got this. • P.S. This is so not how I look right now. I rolled out of bed 20 minutes before needing to leave for work, no makeup [not that I wear much these days] and hair in an unattractive bun because this gal can’t make a cute one. But I’m proud of myself. I’m pushing myself so hard. I’ve worked so hard to reach this point, I don’t want to lose it even despite another diagnosis. Working when your disabled is a level of difficulty that’s difficult to describe, and admittedly I like to make it appear as if it’s no effort at all. I don’t have a social life. My life is work, appointments, avoiding calls from doctor’s offices and the remainder of my time spent under my full-sized heated blanket. But this time last year, I was under a hospital blanket fighting for my life. So while the life I’m currently leading is incredibly physically and mentally draining, I am appreciative to be where I am. I can only imagine how much my life will be changed w/ treatment♡. • P.S.S. We’re 1/4th of the way funded!!😍❤️. If you’re able to help, links are in my bio♡.
you guys ROCK. thank you for supporting this @bonfire campaign and for helping me get closer to treatment♡. link to get one of these shirts is in my bio [there are other styles as well!]
Walking down memory lane a little today. So much has happened since this time last year. Last year we were just launching our blog and Maddison had gone in for her hip surgery. Both things have really shaped our last year. . I thought long and hard about making our family’s story public. But in doing so I’ve made so many amazing connections, and I’ve learned so much from other parents along the way. It’s been a really amazing experience being connected with this community - but I haven’t been free from critique. It’s propelled me to make sure what I share is backed by facts even more strongly than before. . My motivation behind it all is to truly share what our life is like, in hopes that others may learn from us and not feel so alone when they have a special needs or disabled child. We hope our life can inspire you to live your best life. . I’ve haven’t fought hard to make money from our blog (actually I’ve banked a total of $11.56) because that’s not where we’re at, although I do know how to do it. I’m just trying to bring our followers good and true content whenever I have spare time. . Now as I spend the rest of our afternoon with the family, I will be extra thankful that Maddison is no longer in the spica cast. And also thankful that we are continuing in the right direction as we look forward to another year with A Family Of Ohs. We’ll be bringing you lots more good content and there will be lots more appointments coming up for Maddison as we continue to find out what’s going on with our little girl. . . . #specialneedsmom #specialneedsjourney #medicalmama #medicalmom #momlife #mommyhood #momsofinstagram #honestmotherhood #motherhoodinspired #thisismotherhood #motherhoodunplugged #bekind #babygirl #hipdysplasia #spicacast #hypotonia #gtube #gjtube #jtube #tubie #tubiebaby #tubefed #tubefedbaby #feedingtube #medicallycomplex #momswhoblog #momblogger #momhustle #thatmomlife
My life has just been hives and benadryl lately thanks to mcad but I’m pushing through. I’m so ready for my button at the end of this month!! #mastcell #spoonie #tubie #gjtube #gastroparesis #chronicillness #pots #eds #feedingtube
Happy Friday!! Happy Father's Day weekend ❤❤❤ I couldn't imagine life without this man right here. He helps me on the daily. Having a child with special needs later in life after your biological children are grown can be challenging and some days are super rough. I'm thankful we are in this together😍😘 #autism #autismdad #happyfathersday #friday #specialneeds #feedingtube #daddy #adoption #lovewins
Little photo shoot with my momma. She's been here for 2 weeks helping me out. I love having her here but get so sad when she leaves which is unfortunately today. I love u momma ur the best. Thank u for everything u do. Ill miss you @marycg9y 💜💜💜🤗😍😘. #ilovemymom #illmissyou #comebacksoon #momanddaughter #crohns #ibd #ostomy #ileostomy #gtube #feedingtube #nocolonstillrollin #babeswithbags #loveyourself #keepfighting #bekind
Proper & professional at the office
I know we're already halfway through the month so I'm late to the party (per the norm), BUT in my defense this comic has like a million details and a ton of characters and wheelchairs are really hard to draw. 🙈 Anyhoo, to all of you in the LGBTQ+ community with a chronic illness and/or disability, always remember that we need to hear your voices, too! You have unique stories and perspectives to share with the world, and they are valuable. #LOL #iforgotallabouthashtags #WHOOPS #likewow #waytogobrain #goodjob #anyhoo #chronicillness #invisibleillness #disability #pots #dysautonomia #wheelchairs #feedingtube #rarediseases #intersectionalawareness #lgbtq + #pridemonth #comicartist #spoonieartist #spoonie #longcomic #detailedcomic #sodetailed #ohmygoodness #somanydetails
Finished my stomach emptying test this morning! It has been one hell of a day because this test made me feel very sick the last time the test was inconclusive so I am really hoping that this one shows something seeing that it took the whole 4 hours! Heading back off to camp once I get the train out of Boston where I will wait to here about the results from my doctor! Keeping my fingers crossed for answers! #spoonie #chronicillness #chronicallyfabulous #chronicillnesswarrior #warriors #invisableillness #chronicallyawesome #feedingtube #tubie #livinglife #strength #loveyourself #fight #follow #followme #doctorsappointment #summer #summertime #summercamp #summeradventures #girlscouts #wip #thehumbleabode #gastroparesis #fight #fighter #campfriendsarethebestfriends #boston #doctors #tests
You never know what your words can do for someone. 📷: @chloe_bh
Look at our Charlee!!! Amazing progress 💜
Charlee is heading back to the UK! We are so proud of her accomplishments 💕
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