Button Buddies

When I was a little girl I LOVED my dolls. My first american girl doll looked just like me and I took her everywhere. We wore matching clothes and I even cut my hair to match hers (big mistake). For me, my dolls were so much more than just toys to have fun with, they brought me joy and comfort whereever I was – especially since I was so shy and often needed that “security blanket.” 

It’s not difficult to find dolls with wheelchairs, crutches, casts, glasses, even diabetic kits and dolls who are beautifully bald, but feeding tubes? No way, tubes are not good for the brand, not something kids recognize, not cool like casts that can be signed or wheelchairs that can allow you to take the special, rarely used elevator at school – yet for those who have tubes, these toys can make an incredible impact, and that is why I’m here to be their voice.

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Kevin, my “tubie friend,” has a central line & tube(s) like mine!

When I got my first feeding tube (oh so long ago), my mom made me a “button buddy” by hand and to this day, that koala, Kevin, goes with me on every long trip to the specialists, every hospital admission, and is always arms reach away when I’m not in my “safe space” or when I’m struggling to feel strong and positive about my situation. For me, my buddy represents the love and support I recieve from my mom and the rest of my family as well as the strength and perserverence I have had since getting my first tube, my first diagnosis even. Kevin has two tubes and a central line now, and he’s been a trooper through it all.

With toys like these kids are able to share about things that may otherwise be difficult for them to communicate or to understand; through play they are able to learn from one another and see all of these new things in a way that is not scary or confusing, just kids being kids – all together, blind to any differences, and every child deserves that, tubie or otherwise. 

If the buddy goes to a child with a parent who is a tubie, the child can now not only watch while their mom/dad is “eating” or doing fluids or changing the dressing, but with a buddy, the child can now participate by using the buddy to do these tasks right along side their parent! The same is true of siblings of tubies, classmates, and tubies themselves as they learn to care for their tubes and go through procedures, hospital visits, tube replacements, and feeds or medications that they have to do daily at home or inpatient. 

Button buddies allow everyone in the tubie’s life to be involved in as much of their loved one’s journey as possible in a hands on way that can help them learn and grow and understand all of the unknowns and fears they came in with. Heck, even care takers can get a practice round in on a buddy if they’re feeling anxious about how to hook up their tubie or access a line, prime out the air, etc.

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thank you AMT for the tubie bears!! what an incredible donation, I’m humbled and overjoyed.

Buddies have the ability to provide comfort beyond the normal “safety blanket” item that most have and are attached to as children, it becomes another warrior in your battle and another supporter in your journey.

The incredible thing about play is that children will take in a new toy and hardly even notice any “difference” in it, in this case they may ask what the tube is, maybe what it is for, but likely no more than that, and then it’s just another toy. There’s no judgment, no prejudice, simply children playing together, learning as they go, growing, and that in turn becomes them widening their perspective and accepting one another with no qualifications, no recognition of their differences – just as they took in their toys.

When I give a button buddy to one of our little tubies and they see that tube, the light that comes into their eyes is just incredible. Suddenly that toy & it’s very expensive piece of plastic in its tummy changes how even the “littles” themselves see the feeding tubes, how they accept their own tubes, how they accept themselves. IMG_3006

You can so clearly see  that the  button buddy – a stuffed animal –  has the power to change how these children view their tubes from being a medical device that makes them different  into a part of their body that makes them special, that their tubes are not scary or gross or something to be ashamed of. When they fell in love with their Button Buddy tube and all, they have accepted themselves – tube and all.

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My goal this year is to spread the love and the comfort that my button buddy has brought me with as many of our “newbies” as I can, and that’s all in thanks to our donors who have donated the tubes and stuffed animals or the funds for our animals and the shipping costs it takes us to send out our packages.

We’ve had incredible donations from both AMT (Applied Medical Technology, Inc.)and eSutures Medical Supply Sales, both of whom are making it possible for us to send buddies to an incredibly increased amount of tubies this year than any year past ( we are still always looking for low profile tubes) and I just can’t wait to share this with you all….

If you want to sponsor a Button Buddy you can do so by making a donation of anywhere from $12 (for just the animal) – $30 (for the button & “surgery”) – each bear is valued at $30 and shipping is $8-$15 each.

PayPal & Venmo are both @positivelyrachel.com

You can also purchase an animal and send that to us to use to create a buddy! We have an amazon list or you can pick one out on your own and ship it to us!

Here is our AMAZON Buddy link!

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

Xoxo

Rachel

Newbie Tubies turns Two!

In November we will hit our 2 year mark, I cannot believe it! We will also have sent out OVER THREE HUNDRED PACKAGES at that time! We have already had over 300 applications sent in and have filled at least 75% of those, how incredible is that? 

Unfortunately right now, Newbie Tubies has no remaining funds for shipping boxes or purchasing the extra items that aren’t donated, so in order to continue as we hope to, we need YOUR help to get there. 

We’ve had some incredibly generous donors who send us tubie pads, heating pads, supply bags, and other tubie products and we have shopping lists for amazon and etsy for easy online shopping as well as shopping guides for inexpensive items from target, walmart, & fabulous dollar store finds, but none of that covers the $14 shipping cost that each box costs, and I simply can’t afford to pay out of pocket for any more boxes.

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There are so many ways we can raise money, but I cannot do it alone! 

ALL of my artwork profits go towards shipping costs, so check out the shopping site as well as my facebook page to see the artwork that is available and supports this project! There are also vinyl bags, shirts, onesies, and decals that are made to support the project as well! I take commission for both paintings and vinyl so email me or message me if you have an order!

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True amazement and joy when the littles get a buddy, this single toy helps them feel confident and less “different” from others.

We hope to do a shirt fundraiser, so keep an eye out for that as well as for an upcoming raffle! Share our page and these posts so we can get as much attention as possible, every tiny bit helps.

If you are a recipient of a package share a post about what Newbie Tubies means to you, how it helped you and why it’s a cause to donate to. Hearing personal testimomy about what we do and why and first hand experience about the impact it makes can go far, so share that on your social media pages, email it to your doctors or family members and have them share it – let’s MAKE THIS HAPPEN TOGETHER! 

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My first package sent! Now I’ve sent over 20!
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A newbie tube with her matching, tube fed hedgehog!

I hate asking for monetary donations, but right now, I have to do so if I want to send out any more packages. If you have fundraising ideas or are interested in helping out in any way, I’m all ears. 

Thank you so much for reading, sharing, and helping in any way you can. We truly appreciate every one of you and you are making a difference for so many.

 

 

Information for donating and contact information:

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

Paypal: rajinone@aol.com

Facebook: Newbie Tubie Care Packages // Positively Rachel

IG: newbietubies // positivelyrachels_art

Email: positivelyrachel101@gmail.com

 

Chronic Illness Dictionary

New to the spoonie life? Are you the patient or a loved one/caretaker/friend trying to support a spoonie? We have a lot of chronic illness “lingo” that can be confusing to the “real world,” so I decided to create this list to help get some of these out there and easy to find 🙂 This list contains many of the common words and acronyms you will come across  but I’m sure I’m missing something! If you have other words/acronyms I missed, comment and I’ll add them in! I plan to do so as things pop into my mind, as well 🙂

And off we go!

  1. “Spoonie”- chronic illness patient; a term based on @TheSpoonTheory that aims to explain the level of fatigue we face as well as what simple, daily tasks can take so much energy from a “spoonie.”
  2. “Tubie” – a term used in the chronic illness world to talk about individuals who are tube fed; not an insult, we use it about ourselves and one another all the time.
  3. “Stoma” – the tube site, the area on your outer abdomen where the tube enters, and is used to keep it clean and comfortable as much as possible.
  4. “Feeds” – formula that goes through the feeding tube to sustain and nourish patients; “Time for feeds” is like “Time for supper!” except a lot less fun.
  5. Tubie Pads: similar to gauze but much cuter, used to help keep the tube site clean, healthy, and CUTE 😉

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Tubie pads donated by some of our VIP donors : @newbietubies @turkeytotcustoms @HomemadeTubieHappiness @DorkyLittleEtsyStore

  1. “Vent” – if you have a feeding tube that is in your stomach (gtube/gjtube/NG tube) you can “vent” it if you are nauseous or have air stuck in your gut (which doesn’t move). It is often done with a drain bag for gravity or a syringe for suction, which requires more caution – ick!
  2. A cental line ( hickman or port, picc line) – essentially a long term IV that is placed into a large blood vessel near the center of the body most often through your chest and ending at the heart; used for IV treatments like chemo or IVIG, TPN, medications, IV hydration, etc.
  3. Brain fog – cognitive dysfunction that comes with conditions like dysautonomia, ehlers danlos syndrome, fibromyalgia, etc. and causes severe problems with word finding, on the spot thought processing, short term memory problems and sometimes long term as well, lack of mental clarity and trouble holding conversations, etc. // People often say they feel that way too, that it’s normal when you’re tired, it happens as you age, etc., but if you felt the fog we feel as patients, you’d be very glad your fog is not what we experience.
  4. Motility (GI) – movement of the digestive system and its ability to move anything in there along with it throughout the GI tract. When there isn’t proper movement, undesirable symptoms can come up and you can be at risk for conditions like gastroparesis. Gastroenterologists who specialize in these conditions are called “motility specialists.”
  5. Flip/flipped – if you have a GJ tube  you can experience a “flipped” tube, this is when the j-arm comes up from the intestine and into the stomach, where it doesn’t belong. To fix this you have to have it rewired in IR.
  6. Tubie Friend” – a stuffed animal or a doll with medical devices to match your own, so feeding tubes, central lines, oxygen mask, etc.; these are incredibly comforting and meaningful for all ages.
  7. “Button tube” – low profile feeding tubes have an extension that can be removed, leaving only the “button” when you’re not using it! The other surgical tubes don’t have that option, and we usually call them “dangler” tubes or catheter tubes.26610760_10211000346221389_75216378_o.jpg

13. “leaker” – individuals with cerebrospinal fluid leaks

14. Zebra – a zebra is representative of rare diseases, sometimes patients refer to themselves and others with such conditions as zebras themselves

Acronyms you may come across:

NTCP: Newbie Tubie Care Packages

NP: Nurse Practitioner

PCP: Primary Care Physician

GP: Gastroparesis

EDS: Ehlers Danols Syndrome

POTS: Postural Orthostatic Tachycardia Syndrome; a type of Dysautonomia

MCAS: Mast Cell Activation Syndrome

NPO: nothing by mouth, long term or short term, often just 24hrs/overnight before surgery or certain procedures such as tube replacements, or even for fasting blood work

TPN: total parenteral nutrition, nourishment coming straight from an IV bag into your central line in order to stay nourished; can be short term or long term and is used as a last resort for dysmotility/gastroparesis patients who can no longer tolerate oral intake or feeds into the jejunum.

 

Types of Tubes:

GJTube: through your stomach and into the intestines; has access to both stomch and intestines

Jtube: a feeding tube that enters straight into the intestine; most complex and serious surgery out of the 3 surgical options, mostly used for those of us with severe dysmotility not just in the stomach, but also through the lower GI tract – small and large intestines/colon/etc. – and hence cannot keep the j-arm of a GJ tube “down” due to the lack of movement/pull.

Gtube: a tube through the abdomen and into the stomach directly, no lower access

NJ/NG: tubes going through the nose instead of the gut; usually used for short-terTm help for babies, individuals hospitalized, etc. or trials for feeds before surgery for G/J/GJ surgery.

 

*If you have any suggestions for words/phrases I should add, let me know- I’m always happy to have opinions from others 🙂 *

xoxo

Rachel