Shop Away, Newbie Tubie Style

Below are NewbieTubie Package shopping lists and links to our wishlists for items we are in need of right now! This list is current and we keep our wishlists updated based on supply!

We are so thankful for each and every donation, we truly cannot do this without your support and generosity! We are in need of donor support for products as well as for shipping fees to keep going, so share our posts to help us reach more donors so that our loyal followers and community don’t have to keep funding it 😉

Thank you in advance and please don’t hesitate to reach out with questions or suggestions on fundraising or other possibilities ✨

ETSY: https://www.etsy.com/people/rsb4fc/favorites/newbie-tubies-wish-list?page=3

AMAZON:   MAIN LIST: https://www.amazon.com/hz/wishlist/ls/1J7LHVRD4V3A6?ref_=wl_share

BUDDIES NEEDED: Purchase A Buddy to sponsor a button buddy! Add a note so we know who it is from and we will send you photos when we create the Button Buddy and send it out! 

https://www.amazon.com/hz/wishlist/ls/W9IXBH9TFV4A?ref_=wl_share

Sponsor a Book! https://www.amazon.com/hz/wishlist/ls/A2HGIE93P9BL?ref_=wl_share

PAY PAL: positivelyrachel101@gmail.com // VENMO positivelyrachel/positivelyrachel101@gmail.com

SHOPPING LIST: ITEMS WE NEED: 

MINI GERM X – you can get these for 97C at Walmart as well as at any pharmacy or the dollar store! It is SO important that our recipeints have these while they heal, especially since they are having surgery during COVID19. So when you shop for yourself in person, for pickup, or online, add in a few for Newbie Tubies! 

MINI Q-TIP Containers! We need q-tips! The travel sized ones are PERFECT for our care kits! You can find them RIGHT BESIDE the MINI GERM-X at walmart for 97C or at the dollar store for $1! What a steal! We put these in EVERY PACKAGE we can! 

BARRIER CREAMS – We need barrier creams (similar to diaper creams!) for our newbies to use as their stomas (tube sites) heal! 3x antibacterial ointment and calmoseptine also work, if you find them in small tubes we can send those out! Off brands accepted!

CHAPSTICK – We are out of chapstick and it is almost that season again! Any type of chapstick is accepted, so send us your favorite kind to share with a newbie!

FACE MASKS/Self Pampering- (Skin care masks, not surgical/COVID masks, tho we do need those , too!) We love including care items as well as spa/pamering items like face masks & epsom soaks and nail kits to let people do at home pampering post op! A little self care is always comforting and makes you feel nice and fresh, so send us some of your favorite face masks and soaks or any other self pampering products so we can send those out!

FACE MASKS – AGAIN? We do love including surgical masks, so if you make cute COVID masks, send them our way!

Baby Bath & More – We need baby bath supplies as well! Fun items like bath paints are always great but also sponges, towels, bubble bath, and bath toys are welcome! We also use baby socks, chewies, and all care items.

Onesies – Solid colored onesies – if you have any of these on hand or see them on sale, send them our way!

FUZZY SOCKS – who doesn’t love these? 

TUBIE ITEMS- We always need tubie pads, clips, tracheostomy pads, and more! Our Etsy list is the place to go!

BOOKS – What are some of your favorite childhood books? We collect books for children ages 0-10, so donate any lightly used or new books that we can include in packages! We put at least one book in each child’s package; whenever possible, we include a book written about tubies! We have a “Sponsor a Tubie Book” list on amazon that has books written specifically for/about tubies! That is linked here!

Like buddies, the books on this list can be such fabulous tools for kids to learn about feeding tubes and alternative feeding! They help explain the “why” and “how” in a non-scary way that helps kids feel a lot more comfortable with the tubes, both tubie and kids who are siblings or children of a tubie, classmates, friends, etc. 

Both toys and books are a way kids learn about the world and normalize, so reading about feeding tubes with young kids can make them into something they are aware of, have a basic understanding of, and don’t consider to be icky or scary or weird. How cool is that? Kids are truly incredible in how open they are to learning and how ready they are to accept new, different things if we make them open and available to them. 

BUTTON BUDDIES – We are always looking for stuffed animals to use to create our Button Buddies! We do accept lightly used bears if they are in great shape and haven’t been kept in bed with you or chewed on by babies or dogs, etc. We also have a wishlist on Amazon that has lots of fabulous options that can be sent directly to us! 

Button buddies are a tubie’s best friend. They are a learning tool for newbies and fabulous for showing children how to care for a tube, to show they are not scary or bad, they are just another way to eat! We encourage parents with young tubies to use button buddies as a tool to normalize the feeding tube for the tubie as well as their friends, siblings, and classmates. Books and buddies are a huge gift to a newbie, they truly bring light to their eyes and joy to their faces. 

Buddies are also a comfort when you are admitted, traveling long distances to see doctors, and having infusions or shots or any type of treatment! No matter the age, having a buddy can bring some comfort, and any amount of comfort or joy you can bring into such a serious and scary situation is a huge deal.

You now have the opportunity to sponsor a buddy! Simply purchase a stuffed animal from our wishlist on amazon (or anywhere else) and it will be sent straight to us where we will create the button buddy! Make sure to add in a note with your name and contact information so we can send you a photo of the buddy you sponsored and who it went to! 

We include Button Buddies in as many packages as possible, and thanks to both AMT Medical Supply & ESutures we are able to create & send these to so many more tubies! We couldn’t do that without their generosity. 

Thank you to everyone who reads, shares, and donates to our efforts. You are all making a difference for someone who’s is in need of happy mail and love, so you can feel good about that. Sometimes giving feels even better than getting, and I can guarantee that this is one of those times 🙂

Newbie Tubies Round 2

I’m so excited to start year 2 of Newbie Tubie Care Packages (NTCP), after such a successful first year, I can only imagine what 2019 is going to bring. As we begin this year, I want to update you on our progress & how you can continue to help us make this project possible.

We just had a feature in my local paper, and I’m so excited to have had that opportunity! Newbie Tubies isn’t just about packages, it’s about bringing together tubies new and “old,” and to create a space where we can learn from one another and create friendships. Newbie Tubies is also aimed towards the caregivers and loved ones of tubies or spoonies, we want to support everyone as much as we can, in any way we can, for as long as that person is around, tubie or caretaker.

To keep this project up and running I have worked endlessly to find people willing to donate to this cause, or even better, others who are as passionate as I am and are ready to be part of the NEWBIE TUBIE TEAM, and though I got turned down or ignored more times than I can count, I did find a few ladies who are a true part of the team and help whenever they can.

Most of my donors are or were sick themselves or caretakers, and that’s why they make items like tubie pads and thermo-bags for IV fluids, etc. Our donors know the importance of this project, and I am continually amazed at the empathy and support I have gotten from these individuals who I have never “met.”

That said, my 3 tubie donors and 1 heating pad donor, as incredible as they are, they’re also trying to make money from their products, many to pay medical bills. I can’t ask 4 women to donate enough for over 100 packages!

I am always looking for more individuals or groups of people who feel inclined to join Newbie Tubies and the VIP donor program, which means I do everything I can to send people in the direction of the shops who donate to us, and I post on all platforms (FB, IG, blog, twitter, in boxes, etc.) both to thank our donors, but also to “pay it forward” in the way of sending people their way.

If you ‘re interested in being involved but don’t know how to sew or aren’t crafty, I always have tasks I could use help with. We want to include as many people as we can, both on the team behind the scenes, but also for the members of our program/follow our accounts to continue to learn through blog posts and tip lists while also having a chance to interact with others who are also going through this journey.

So, I’m going to share below some of the things we need in order to keep Newbie Tubies as active as I hope to.

 

WAYS AND RESOURCES FOR GETTING INVOLVED:

DONATIONS: what we need and how you can find it

EASY OPTION!

I have multiple lists on amazon, etsy, and simply items you can find at the dollar store or the mini-item aisle at walmart while you’re grocery shopping! I try to make it very easy.

You can also purchase products like art work and vinyl products that I make but put all profits back into the project – every sale helps!!

            We also have guides and lists for what we use and where you can find it! It can be as simple as buying some extra chapstick or germ-x when you’re shopping for yourself.

Amazon link:  http://a.co/4VCstGg
http://a.co/8DNAefV

Link for Sponsoring a book for our “littlest tubies” : http://a.co/1yuuZO2

Etsy link: https://www.etsy.com/people/rsb4fc?ref=hdr

Link for “Tubie Shopping Guide”/ our shopping list: https://positivelyrachel.com/category/newbie-tubies/

Volunteer Survey:

I have so many projects I’d love to do, but I myself am a tubie and a quite sick one at that, but I do all the packing of boxes with the help of two fabulous ladies who come over almost every week to help, and from my Mom, who is also passionate about this subject. When I started the project, I never could have imagined that I would send out over 100 boxes in just a year! Because of how much NTCP grew, and how quickly, I can use help from anyone who feels called or inclined to be involved.

Specifics:   I need some individuals who are blessed with an understanding of technology, something I lack. A few examples:

  1. Etsy! Anyone up for helping me get my page set up? All profits from my sales go towards NTCP, so I would love to sell more, but I’m struggling with the technological aspect of that goal.
  2. Google Drive – I use google for most records and organizational guides/notes/etc. If you know a lot about that, that would be beneficial!
  3. Graphic design and artistic minds
  4. Social media help; posting, advertising, sharing, interacting – I would LOVE for our IG page to be more interactive, people commenting, sharing, getting to know one another, but I don’t do a great job keeping up with it and making it happen
  5. Keeping track of boxes; who got them, who didn’t, how many we do, etc.
  6. Finances and Inventory – track how many packagegs we send out but also what donations we get- money or product, as well as my own sales that go towards it, and the amount I end up spending out of pocket to complete packages

OUTREACH – looking for new donors, sharing posts, and watching for sales we would be interested in.

a. Find other blogs, pages, or articles that relate, we share them or guest post to spread awareness and find new people with their own experiences that we can learn from!

b. Watch for sales, giveaways, and new shops for donating as well as for individuals who may have extra tubes we could use for tubie animals-– often kids who don’t need them and had an extra gtube at home, and it is no longer needed, etc.

Your own PRODUCTS, what do you make? (if anything)- like tubie pads, tubie clips, other medical items, or any other “carepackage” items like bath salts, lotions, soaps, etc., we would love to hear from you!

1.Tubie pads/clips/go bags

  1. Feed Backpacks – converting kids backpacks or adult backpacks to hold tube feeds, pumps, and such.
  2. Tubie Friends: stuffed animals with tubes for little kids – two part project…
  3. Finding the tubes through hospitals, facebook, and contacting the manufacturers and seeing if they would donate any sterile tubes but ones that are either expired or have defects that make them unusable—explain what we are doing and see if they’ll send us tubes- especially button tubes of any kind, but we take anything we can get! (g, gj,j tubes more than NJ/NG.)
  4. Making them! Do you make these or know you can? That could be another upcoming thing based on donations/tubes we can acquire.

 

There are so many ways you can help this project, just sharing it and telling others about it is helpful. We are looking not for more applications – we get countless applications – but for awareness and depth and support from the “normal” world. The goal is to make this terrible thing into something slightly more tolerable through creating resources and opportunities to be yourself and feel what you need to feel, but also to learn and be prepared for all that could come your way ; I work hard to create a resource that gives you so much more than doctors or healthy individuals can.

 

Happy Feeding Tube Awareness Week and thank you for being inclined to read and learn about this fabulous project!

A Glimpse at Inaccessibility From a First Time Wheelchair User

The other day I had my first experience using a wheelchair in public. Out of four and a half years of being chronically ill I’ve reserved wheelchair use to rolling in and out of the hospital, mostly out of pride. My illnesses limit me in so many ways, I didn’t want to allow it to take any other ability from me either. So instead of using a wheelchair as an aide when I was sick and weak, I powered through or sat on the sidelines. Recently, I decided letting life go by because I’m too stubborn to admit I need help is silly and I ventured out for a day of shopping with my girlfriend. I made it through the first few stores leaning on the shopping cart as support but by the end of the day it was clear I needed to use a wheelchair. I expected the stares from strangers but what I didn’t expect was the blatant inaccessibility “accessible” places are.

Because I was too weak, I required my girlfriend to push me. This tied up her hands and crossed out the option of a shopping cart or basket to carry our items. Suddenly I found lap full of various things we wanted to purchase. While this wasn’t a huge pain this time, it would’ve been a problem if we were buying more or heavier items. How can shops expect a wheelchair user to navigate with either a small basket attached to a motorized cart or no basket at all?

The second thing that was an issue was my sight line was cut in half making it impossible to see the higher selves and options on them. While shopping in one of my favorite stores, I found myself able to see only about half of what I normally experience while shopping. And forget trying to reach anything on a high self, it was hard enough to grab things from my sitting position in the wheelchair.

But by far the biggest problem we ran into (pun intended) was the fact that the aisles weren’t wide enough. I’m sure anyone will admit the aisles in stores are narrow and navigating it with a shopping cart is hard enough, but I never imagined how hard it would be to find my way in a wide wheelchair that wasn’t exactly fantastic at taking turns. We found ourselves bumping into corners and trying to wiggle our way out of the line of other shoppers trying to pass.

Until this recent experience, the inaccessibility of stores was never forefront in my mind. I knew my friends who use wheelchairs often encountered issues while shopping, I just never realized how frustrating and inconvenient it was. Making sure spaces are accessible is extremely important, but so is ensuring those spaces are truly accessible for all.

Blog by Carolanne Monteleone

You can find more by Carolanne @aheartforhumanity.wordpress.com