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neilwoerner I love my kids. After the day I had with #Cash , this was a perfect night cap. #3monthspremature #casper #myboy #trached #gtube #yougetwhatyouputin @pinupgurl79 42min

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neilwoerner I love my kids. After the day I had with #Cash , this was a perfect night cap. #3monthspremature #casper #myboy #trached #gtube #yougetwhatyouputin @pinupgurl79 43min

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baleman97 Even my tube fed girl uses a HydroFlask. Keeps formula & flush water at the perfect temp, especially on hot summer days! @hydroflask #gtube #specialneeds #cerebralpalsy #hottercolderlonger 3h

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danica_and_river I swear if it's not one thing it's another. We've spent all morning in the #ER. River got a temp last night (100.4F), went down with Tylenol then back up this morning. He was screaming like someone was trying to kill him all morning, oxygen sats were tanking into low 70s, some high 60s. Cardiologist told us to take him in. He was dehydrated from losing so much liquid out of his stoma and is down almost a pound from last week. He also has an ear infection. Labs looked okay, waiting on urine and an abdominal #ultrasound. The surgeon on call at Children's told our ER docs that the only thing to do now is to block up the #stoma until they can close it surgically. They suggested putting a #gtube button back in, but at this point the stoma is shrunk to at least an 8fr, so the alternative is a Foley cath, which is intended to be an extremely temporary measure. We need to talk to the surgeon again to see how soon they can get him in to close it, and it better be damn soon. #RiversIncredibleJourney #hospital #feedingtubeblues #sofuckingoverit 7h
  •   motleytoddler I'm so sorry to hear all of this. I'm hoping you can get to the surgeon fast. 7h
  •   danica_and_river @motleytoddler Thank you. I hope so too! 7h
  •   andreabdelnour Get well baby bear 6h
  •   jayden516 Get well River... #YouGotThis 6h
  •   tink0811 6h
  •   danica_and_river Got an 8fr Foley in the stoma (did i call it or what?) and are almost ready to give him his antibiotics and more oxy. They're gonna update the surgeon at Children's and see how soon they think they can get us in 6h
  •   twinmommawrz So sorry this is happening! Hope things move swiftly! 4h

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Valencia Carrie Terenzini
dappledthings Getting Kathryn ready so that we can go do errands😀 #medcollage #gtube #seizuredisorder #stircrazy #cabinfever 7h
  •   swest1959 @dappledthings : special children for special people 5h
  •   mrscassanova @swest1959 love that! Such beauty in this statement. @dappledthings God is sure faithful!! 5h
  •   hjelmstadm Hope escape from outside the four walls was well worth it for all :) I appreciate all the extras you do to get there! 5h
  •   dappledthings @theprimalnurse Thanks:) I wish she would eat more of the foods we prepare but she is kind of set in her ways. We do sneak Kerry Gold and collagen in wherever we can! 3h
  •   dappledthings @mrscassanova @swest1959 I am not extraordinary by any means. Just doing the best I can for Kathryn, just like I try to do for Natalie and Jake. So grateful for grace and God's enduring love and mercy. 3h
  •   dappledthings @hjelmstadm It was a successful trip! My husband is out of town and Natalie is up at school during the week so running around is a little more challenging. It's good to have some REAL groceries in the house again. 3h
  •   theprimalnurse @dappledthings there ain't nothin' wrong with that!! 3h
  •   mrscassanova Grace....amen! Without it, where would we be. Love your heart! 3h

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ninitime Very frustrating but we had to reschedule Isa's GTube surgery bc her surgeon took unexpected leave and they don't know when she's returning... So we are using another surgeon from her practice that has great reviews. Just frustrated we have to wait another month... I was mentally ready for tomorrow's surgery... So now we wait again... Just hope Isa doesn't lose any weight for a month... 😕 sorry for the vent... #chdproblems #tubieproblems #overit #ngtube #hatewaiting #prayersforisa #heartwarriorisa #heartwarrior #gtube 12h
  •   dammit_morgan All before surgery! That's bananas they should of have more notice. 12h
  •   dammit_morgan *gave 12h
  •   ninitime @dammit_morgan yea I'm not happy about it... Got a vm late Friday so I had to wait all weekend mad about it.. Awesome right 12h
  •   dammit_morgan I'm sorry mama. Maybe it was a blessing in disguise. We will keep y'all in our thoughts. Xoxo 12h
  •   memanda I hate when they make people wait days for stuff like that. Maybe like ^ she said blessing in disguise. Praying for you guys. Sorry you have to deal with this Momma. @ninitime 11h
  •   ninitime @dammit_morgan @memanda thanks mamas yes let's hope so 11h
  •   jacquiac Frustrating! Sorry Lor! 😬 8h

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leannelewis11 This is the picture Cody sent me at work tonight, the caption read "ha see him peeing" lol, Boys will be boys! @kingyarbrough 23h

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shavon0827 Seamus loves to be home!!! #famousseamus #gtube #outofbabyjail 18h

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1d arjake
Video Allison Jacobsen
arjake Well, we had a fun time with family this weekend, but now I think he has a little bug. He'd been having those low grade fevers again and not tolerating feeds, so we chalked it up to popping molars. He was good for a couple of days and then last night it went downhill . Poor bub has been a pukey, hot, sweaty mess with low sats and weak cry. We are all hoping it's short lived since Mommy and Daddy are on vacation this next week ! Little Squirt! #smalldude #trisomy #monosomy #tubie #gtube 1d

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Normal Porcha Key photography
pkeyphoto It's what the doctor ordered! He wants to do it by himself! He's totally going to do something in the medical bc he loves playing doctor on himself. #bigboy #supertubie #tubie #gtube #refluxisevil #gerd #buddha 1d

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marywebb13 Snoozing the day away. New blog post detailing what went wrong with Gemma's surgery. (Link in bio) #cerebralpalsy #surgery #gtube #complications #babygirl 3d
  •   mablemurple I'm so very sorry you had to watch your sweet girl suffer like that. I can not imagine. I am praying for her and for peace in your own heart as you wait on Him!! 3d

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munizraquel They gave me a puppy sticker!!!! LOL
Longest day EVER!! Been here since 8:00AM and I'm going out till 11:00PM -.- Chemo número 3, 3 more to go!! :D I'm half way there!!!! #chemo #cytoxan #chemoselfie #headache #gtube
3d

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carrieloucrafts Working on a snowflake tubie #feedingtube #tubie #gtube #snow 3d
  •   katiemariehicks2 Let it go... Let it go.... Don't hold back anymoreeeeeeee 3d

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Normal marywebb13
marywebb13 Rare complications have arisen. We're now waiting to find out if Gemma has to go back in for surgery. #lordhavemercy #cerebralpalsy #gtube #surgery 3d

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  •   lizzy_81712 These are so cute! I've had my Gtube since I was 18 months and I'm 16 now! 4d
  •   unfagulous have you ever thought of making colostomy bag covers? I'd be really interested in buying some as well as a tubie pad to match x 1d
  •   carrieloucrafts @unfagulous I would love to make some- just need someone to send me a bag to use as a template 1d

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