Feeding Tube Awareness Week Feature-Ally+Breanne+Mandi

Day three of spreading some Feeding Tube Awareness up in here! Let’s jump to it, as we have three precious humans to hear from today! First up, Ally! You can find her on Instagram @myhealthquirks!5

Q: What diagnosis led you to needing a feeding tube?

A: Gastroparesis due to Elher’s Danlos Syndrome

Q: How long have you had your tube/been tube fed?

A: 3 months Continue reading “Feeding Tube Awareness Week Feature-Ally+Breanne+Mandi”

Feeding Tube Awareness Week Feature-Rose+Sam+Ansley

Welcome back! Let’s dive right back in with day two of Feeding Tube Awareness week with my friend Rose! You can find her on Instagram @my.eds!14

Q: What diagnosis that led you to needing a feeding tube?

A: Gastoparesis, ntestinal dysmotility, MALS

Q: How long have you had your tubes?

A: Six months.

Q: What type of tube do you have?

A: An NJ tube and an NG tube.

Q: What would you love to share with someone new to tube feeding?

A: If tube feeds work for you it can be a complete life changer! It seems scary but if it can drastically improve your life try to be open to it. Continue reading “Feeding Tube Awareness Week Feature-Rose+Sam+Ansley”

Feeding Tube Awareness Week Feature-Liz+Lauren+Cat

Welcome to Feeding Tube Awareness Week-Pretty Couch Potato Style! Over the course of this week, I’ll be sharing fifteen of my tubie friends’ stories.

The range stories are all very different from each person. Some have been on tube feeds for nearly their entire lives, some just started on tube feeds, and some don’t even use their feeding tubes for feeding (HAYYYY, das me!)

Let’s start here with my friend Liz! You can find her on Instagram @liz_81712!1

Q: What diagnosis led to you needing a feeding tube?

A: The underlying diagnosis that caused me to require tube feeding is mitochondrial disease.

Q: How many years have you had a tube or been on tube feeds?

A: I have relied on tube feeds as 100% of my nutrition for 19 years now, since I was 18 months old. Anything I’ve been able to have orally has merely been for pleasure. Continue reading “Feeding Tube Awareness Week Feature-Liz+Lauren+Cat”

Tubie Pad Feature: Bella Madalyn

Hi friends!

I am so excited to be back with another Tubie Pad Maker Feature this week!With Carrie0751Web

Just as a reminder, here’s a breakdown of what I’ll be sharing!

  • My personal thoughts on the maker’s Tubie Pads.
  • A bit of the maker’s story.
  • The materials they use and special features that sets each of them apart to help you find the right fit for you.
  • Lots of photos to hopefully help you get a full picture of what you are purchasing (on a human, front, back, etc.)
  • Price and where to find the Tubie Pads.
  • Lots of other nuggets of info depending on what each maker chooses to share!

This week I’ll be sharing and will be hearing from my new friend, Kaitlin Metheny of Tennessee, who started Bella Madalyn! She sent me some super precious floral tubie pads! Look how cute! And she picked them out herself! IMG_4489 Continue reading “Tubie Pad Feature: Bella Madalyn”

My Story Part Eighteen: The one where I get my life changing G-tube

Hi everyone!  This is the last post of this “My Story” series.  Thank you all for your support in my telling of this story, it means the world to me.  I know it’s hard with this being a chronological story and a blog posting it backwards.  But I’ve made a list of links on this page and this page that will help guide you through them in the correct order!

I am so excited to get to this part of the story!  This is where things finally start to look up and it makes me so happy.

My Story Part 18 2
This obviously isn’t me in the hospital! Just me being happy! (Wouldn’t it be amazing if hospitals were as cute as this place though?!)

Just a recap, I’m still hanging out in the hospital from the same visit as the end of Part 17!

After being in and out of the hospital and getting tube after tube shoved down my nose to drain my stomach, we all knew something had to give.  One morning, my doctor came in and asked what I thought about having a draining G-tube placed.  She knew that had been the initial plan at Mayo Clinic and that it didn’t end up working out due to my anatomy, but she was thinking about asking a surgeon if he would be so kind to place it for me. Continue reading “My Story Part Eighteen: The one where I get my life changing G-tube”