Box Braids and GTubes

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Box Braids and GTubes

Box Braids and GTubes They're actually knotless braids and it's actually a Gastrojejunal tube but who asked? Our journey through life wih short bowel syndrome - SBS.

08/08/2023

Unbothered.

28/02/2023

After his doctor’s appointment, Aiden aka DJ Smiley was a co host of Disney Jeopardy at Children’s Hospital’s Seacrest Studios.

DJ Smiley’s favorite Disney movies are Encanto and Nemo, his favorite category was “characters” and he likes to howl like a wolf on the mic. 😂

He had so much fun. 🥰

27/01/2023

Aiden is doing great! As usual the good outweighs the bad.

He is still enjoying his tube feeding breaks but we are not going out as much since it is cold/flu/C19/respiratory virus season.

02/01/2023

Aiden brought in the new year with family, positive energy and optimism. 💪🏽 We look forward to going home but we will continue to make the best of it until then.

26/12/2022

Merry Christmas! 🎄We are sending love, hugs, patience and good food to the kiddies and families inpatient this holiday season. 🤗 ❤️

29/11/2022

November photo dump!

Aiden is doing great, winding down the TPN and ramping up the tube feeds. Some days are better than others but we keep him busy and entertained during breaks and most importantly he keeps a smile on his face.

29/10/2022

🎃👻 TPN Breaks!

17/10/2022

Happy Monday! Aiden is doing great. As usual we turn up on his breaks. 🥳

He gets his new feeding tube this week, hopefully we can kiss this TPN goodbye before Christmas. 🙏🏽❤️

03/10/2022

This is how we run out the door when appointments are over 😩😂

Another appointment, another week NPO, steadily gaining his weight back and meeting his GI goals. 🥰

11/09/2022

Happy Sunday!

07/09/2022

🥰 doing good, feeling better!

05/09/2022

Looking back at this pic I laugh because he wouldn’t walk, talk or smile for a couple days...but he took these chips with no intention of eating them..but wouldn’t share them. So I knew he was ok. Even when everything sucks he has a good sense of humor. He’s doing good now thankfully. And I’m just grateful that some people do still show up on this long, crazy ride.

19/08/2022

“Hello Goat my name is Aiden what’s yours?”

11/08/2022

He said he saw stars, Earth and Mercury. Happy Thursday!

04/08/2022

Yes! You can swim with a gtube! 🥰 Happy Thursday!

21/07/2022

He loves to get cupcakes and carry them around and not let you have any! No he didn’t eat it but he licked it and didn’t gag. He’s great, thriving and enjoying the exploration. I’m excited for this next chapter.

01/07/2022

So Far Summertime Photo Dump! 🥰

Aiden is doing great, ripping, running and having a great time. Hydration is so important to patients so we try to stay indoors or go out in the evening when the weather is cooler. He still does his feeds 17 hours a day and gives me a panic attack with every front roll and somersault. Feeding tubes stop nothing! 🥰

12/06/2022

He picked out the cake, asked for it every hour for three days before we picked it up and got the first slice. I wonder what he did with it...

Happy 4th Birthday to my baby boy! 🥰

11/06/2022

Happy 4th Birthday to our Little Boy!

14/05/2022

My mood when I hear “try breastfeeding” “INFANT formula” “order it off of Amazon”...🤦🏾‍♀️

The Friday leading into the long Presidents Day weekend at 4PM...we spent that last business hour confirming that all 75 cans of Aiden’s formula had been recalled. At least two children died and countless others were sick. 🙏🏽

Thankfully I found the only can of replacement formula in 50 miles at Walmart and my neighbor works at a doctors office and was able to give us samples to get through the weekend.

Since then, due to the shortage, Aiden has switched formula three times. Did I mention he has gastrointestinal issues?!? 😩I don’t doubt that we will need to switch again. Thankfully we are good for now, please pray for those who are not.

People love to speak first, loud and proud, agitate and get political while we’re just trying to feed our kids.

I don’t know the solution and I support those working on it but one can of formula on Amazon is $75...per day. 😩

10/05/2022

Mother’s Day brunch. 🥰He did not eat but he did well sitting, socializing, identifying and using his inside voice when he said ugh and yuck. 😩

04/05/2022

Dentist appointment was a success! He cried...but he’s excited to brush twice a day...and buy toys from Walgreens. 😩

01/05/2022

When your mom says no ask your Grandmother. 😂

23/04/2022

He has strength, resilience and ambition. I just carry the water. 😩🥰

17/04/2022

Happy Easter! 🥰

05/04/2022

We are all learning and growing everyday! Nope he’s not eating but he’s starting to do all of the things us eaters take for granted like enjoying the smells and exploring the different textures.
I don’t know why he’s saying “ugh” and “ewww”but we’re working on that too,

18/03/2022

Happy Friday! 🥰

12/03/2022

Happy Saturday! All is fine and well thankfully. We had a great visit this week, we’re so thankful for our GI doctor and team!

01/03/2022

I’m taking notes while Aiden is enjoying life and making your party his party 😂.

All is well, formula recalls, increased medication costs, toddlers that scream 🗣NO extra loud while you’re in public minding your business won’t get us down, we are getting outside and taking advantage of the little peek a boo days of Spring!

15/02/2022

A proper ending to ...we had a quick overnighter at the hospital because the feeding tube popped out.

It doesn’t typically just pop out but when you’re a 3 year old who likes to bungee jump, UFC wrestle and run full force into any and everything, it’s bound to happen. 😩

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Happy 4th Birthday to our Little Boy! #boxbraidsandgtubes #sbs #birthday #gemini #toddlersofinstagram

Happy Easter! 🥰 #boxbraidsandgtubes #sbs #gtubebaby

Today’s lesson, the letter F is for Food. He will see it and smell it, we are working on touch. He is not a big fan of the different seeds and textures of this bread so he’ll get rid of it like a hot potato. If it doesn’t hit the floor I’ll eat it 😊 He’s a good sport when he’s not telling people he’s so hungry. 😩 #gtubebaby #boxbraidsandgtubes #feedingtherapy

Happy Tuesday! Aiden has been doing great, enjoying the toddler boss life and maximizing his feeding tube breaks with fun. ☺️ He is still not eating or drinking. Because of the feeding tube he’s not hungry and I don’t think he’s interested anyway.🤦🏾‍♀️ We’ve tried several tricks, colors, flavors, scents and textures. People eat and drink a lot, we discuss where we’ve eaten, what we’re gonna eat next and most events or interactions have something to do with food. He’s not impressed by any of it! #sbs #boxbraidsandgtubes #toddlersofinstagram #gtubebaby

Happy Monday!!! A year ago, he would paint with a brush and wouldn’t dare touch anything that wasn’t solid and dry...I am definitely grateful for all progress big and small. #gtubebaby #boxbraidsandgtubes #toddlersofinstagram

Happy Friday!!! Red Hots are my favorite, Aiden’s too I guess 🤷🏽‍♀️😂 #gtubebaby #boxbraidsandgtubes #happyfriday #toddlersofinstagram

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