8,033 Posts

ktoogie Surgery went well this morning. Can now concentrate on gaining some much needed weight for double lung transplant #cysticfibrosis #transplant #organdonor #peg #gtube 17min

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neilwoerner Happy he is as healthy as he can be... #trached #gtube #sprinting @pinupgurl79 36min

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certified_sco Because where Happy . Me & #teamchace would wish everyone a Happy and Blessed Friday... and hope everyone enjoys there weekend. 2h

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watchthewater Medical review today! So many new meds. Also having my G-tube and pacemaker assessed to make sure that they're both working alright. Doubt there's any problems though, everything's been quite good with them! #ehlersdanlossyndrome #epilepsy #diabetes #cysticfibrosis #tetraologyoffallot #heartproblems #pacemaker #gtube #spoonie #goodtimes 5h

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kate_triestolive I'm waiting, already 'dressed up', to be driven over to the surgery room... And yes...Ella goes with me I know I'm 41 yrs old...but I just NEED her to come w/me ️ Still scared...but I just have no choice right now... I see you all later...with my gtube then 10h

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bmbmkatie There is just so much progress in this one picture! I am so proud of every triumph this babe makes! 14h

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Normal grod_fukuoka89
grod_fukuoka89 明日のBRAVOで久々にForcetillで一曲やります!!どのタイミングかは未定ですが、とりあえず今日からこれ鬼リピででおっしゃす!! Chase after time Forcetill bravo (GROD&CHOPPIE) : https://youtu.be/KY7ezJoaErY

以前サンクラにもあげましたが、youtubeにもUP!! DARAHSOULのEPよりRemixっす!

#gtube#BRAVO#darahsoulproject
15h

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elihopsfoundation #BabyFlow is when a very young child gets their #flow on. I made a "micro #ropedart" from a piece of paracord and a #monkeyfist. #miniteamelihops member #Quinley has an #ensephalopathy and is also #gtube fed and both of her big brothers are #autistic! She is, as always, being her awesome self! #braindamage #AutismAwareness #Autism @davetheyoyoman @david_shyguy @chengboy @lukevongullbrantz @vera_the_only @westheminecrafter 15h

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elimysmommy Em's favorite part of being fed is when she can do her own meds. It's equal parts cute and sad. #gtube #shesjustcute 15h
  •   squydster I love this! she is so sweet!! Ruthe just likes to steal her med syringes & lick off the extra flavor! 😛 13h

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kayderc Worked with a #specialneeds #Gtube fed babygirl today. Cutest little flower print G-tube cover #gtubeawareness #feedingtherapy #speechtherapy 18h

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sakari82 Kindergarten physical for Angelo and weight check for Anderson! Angelo did so good only cried for a minute for his vaccines. Anderson lost half an ounce which isn't good. I am hoping since he cut six teeth including four molars we will get back on track by his next appointment. If not we will have to discuss the feeding tube which today the doctor dropped the bomb that she would recommend the #gtube instead of the #ngtube. To avoid further affecting his #oralaversion plus the fact that she believes (as do I) that he will just rip it out all the time. 19h

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you_no_tell_me Dottie enjoying learning about the digestive system at her G.I. appointment today. #babygirlbogus #dottieupdate #dorothyishome #gtube #tubie 21h

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Valencia Kate / Katie / Kathy / ...
kate_triestolive My lovelies...thank you SO much for your messages to my recent post! You all give me strength and I couldn't be more grateful for your support ️ I'm still in hospital...and I just can not see these hospital walls anymore I feel a little bit better as I did the last months...but...I still have a long way to go... And sometimes...I don't know...I can not find the right words in english...but sometimes it's really really hard, to continue to live this life like it is
Tomorrow my surgeon will place a gtube... We will try, how and if it will work and if it will not work right, he will change the gtube to a gjtube... I'm still scared...but I guess I will fight through all...as always
21h

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afknick A very drugged Charlotte just went back to get even better drugs and take a nice, long nap. The anesthesiologist promised to take good care of her. Which they always do. #trach #gtube #preemie #lifeafternicu #surgery #nobigdeal 23h
  •   kykaree Rocking the gown! 23h
  •   hannalytical Praying for you girly!! You @afknick and obviously little miss C! 23h
  •   itskahalia Who else would have their hairbow underneath the hairnet coordinating with the Gown?! 23h
  •   mandyhar23 That hair net is very full praying for you guys that it works. 22h
  •   brit2damax She is such a light 20h

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Normal CampOfHeartWarriorsFoundation
chd_awareness #Repost @cathyjmendez with @repostapp.
・・・
146 days in the Nicu! He's all smiles 2 days post Surgery #chdawareness #heartwarrior #gtube 24h

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1d raremom
Slumber Shawna Scimeca
raremom Preparing for surgery! Trying to put weight on. Wearing her backpack at school.
#tubie
#tubefeeding
#gtube
#feedingtube
#realfoodblends
#potterybarnkids
#zevexinfinity
#veptr
1d
  •   mandibula Love the PB kids backpacks for the pump! 23h
  •   raremom I just modified it with a grommet in the side cup holder pouch. I love it bc I have more room to put tape and things in the front. 22h

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Normal Spray Pal CD Splatter Shield
spraypal This is how we're rolling today. 1d

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Normal Mackenzie Rae Edlund
kenzyrae42 Today is a huge day for Talan. Today is Talans tubieversary- he has had his g-tube for exactly one year. It was been a long year with many accomplishments. Talan is now 23 lbs and 33 inches long, he has gained oh most 5 lbs and grown 4 inches within the past year. That may not seem like a lot for most children but for Talan that is spectacular. We have to remember that at 14 months old, when he got his tube, he hadn't even doubled his birth weight yet. A little update on how he is doing.... Talan receives occupational and speech therapy through birth-3 on a weekly basis working on his feeding and speech issues. Next month we will be adding a physical therapist and special educational teach to his birth-3 plan. We are hoping to see his medical team in Rochester next month instead of waiting until May. We will be adding a pediatric neurologist to his med. team because of some worries about his developmental delays.
#tubie #tubieversary #oneyear #myyounglove #talan #gtube
1d
  •   beckygillott13 Talan is so adorable and he has done amazingly this last year. Love seeing your updates! Pretty much the same list of professionals as Ollie has, he likes having a big entourage! 1d
  •   li22ie81 An adorable little supertubie!! 22h

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laurapetersen13 Yesterday was confirmation at God answers pray. We have a little secret to share- we tried a trial beginning last week of only using Logan's tube for hydration (water) and not for calories (medical formula). The therapists as well as Joe and I thought that Logan had learned enough and enjoyed good enough that it just might work. The doctors agreed so we went for it. A week later- Logan gained weight on his own for the first time in his life without a tube. That's right he can do it. It wasn't a lot, only 2 ounces, but it did it!! Logan will still need the tube for hydration seeing as he doesn't drink enough but this is HUGE! I'm so grateful for this answered prayer. It came in His time, not mine. And to celebrate- Logan ate a whole hot dog (minus bun) at Costco. Another first!! So the next time you see someone fighting back tears, sipping on a Diet Pepsi at Costco, it might be because they have seen their prayer finally be answered. #soblessed #prayersgetanswered #gtube #feedingtherapy #tubie 1d

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