Go on Etsy and look for feeding tube backpacks, some people take regular backpacks and modify them specifically to hold bags of fluids and the pump and they make them super cute! also, "I ain't got no needle in my chest, in my chest" either!!! AND we have the same IV pole!!! I'm going to be decorating mine with washi tape and/or stickers i think cause i have to decorate all of my medical devices apparently lol! And, just so you know, if by any chance the tube DOES get clogged (which is possible since like you said the formula goes low and slow AND the formula has a lot of sugar that makes it easier to gunk up the tube and clog it) If you take a syringe full of Coca Cola and slowly push it, the carbonation and the acidity of it will break down the clog so you hopefully dont have to get it replaced. Also, I HIGHLY suggest joining a Tubie (someone with a feeding tube) support group, youll learn so many tips and tricks on how to make your life a bit easier and its a great place to go when you have questions. plus its always nice to feel like a part of a community who totally understands what you're going through, as I know you already know

@teeleemusicthugbilly9887

7 жыл бұрын

Mandie Zangora thats the best advice. you go girl

@MandieZangora

7 жыл бұрын

aw thank you!!!! You end up learning a LOT really fast when you have a chronic illness and i have around 15-20 diagnosis currently and still have symptoms that aren't diagnosed lol

@franzik.6952

7 жыл бұрын

It's crazy that someone out there uses the same tricks as I do. The Coca-Cola... the special bagpacks... the pole beside my bed right now decorated with washi tape from head to toe :D Thats amazing, keep on fighting. Best regards from Germany!

@purrbugaloo

7 жыл бұрын

The Coca Cola trick is brilliant! I hope she sees what you wrote!

@Trekkifulshay

7 жыл бұрын

Our medical supply company gave us a backpack for the pump. It's just black it's not cute but yeah.

I used to have an Etsy shop making feeding tube bags. I started making them for myself when I couldn't fine one that had all the elements that I wanted. I stopped making them after I found a !!!!!!! VERY HELPFUL TIP!!!!! If you go to the sporting goods section of target or Walmart or to the sporting goods store and get one of the backpacks designed to carry water in a bladder with a hose going through some strapping to keep everything in place as well as pockets and great storage capabilities. I just take out the water bladder and hose. I hang the FT bag from the Velcro loop that held the water bag (I also use a small binder clip to make sure the Velcro doesn't come undone from the weight of the bag. Then I snake the tubing through the straps, under my shirt (if you want to do it that way) and connected it to my tube. I also found it helpful to put a para-cord bracelet or something around the bottom of the strap and tubing so it does not flap everywhere and get caught on door knobs and the like. I can show you a picture if you can't picture what i'm referring to. Also, something I found VERY VERY helpful with the pain was viscous lidocaine. It is a prescription and it is a little gross to use but once you realize what a relief it is you won't care how weird it feels in your mouth before you swallow. I finally got smart though and took a very small syringe (no needle) filled with the solution and directed it back towards the problem are so that my whole mouth wasn't numb. I hope you find any of this helpful. I have had multiple kinds of feeding tubes over the last few years and I have learned a lot of helpful tricks so don't hesitate to ask if you need some help. Oh and BTW, the pain does get better.Hang in there!!!!!

Your positivity and happiness is always so inspiring

@christinadoherty3212

7 жыл бұрын

Mandeville Sisters Oh hey its the Madev sisters! I love that you guys are part of the FreyLife family! You two are some of my favorite KZreadrs. 💜

@MandieZangora

7 жыл бұрын

I love seeing 2 other people whos videos I watch commenting on here, Its awesome that youtubers are so supportive of each other!!!

@Joy.Elizabeth

7 жыл бұрын

Mandie Zangora I love it bc I can find other great KZreadrs n fellow spoonies to watch! just subscribed to your channels! ❤❤

@MandieZangora

7 жыл бұрын

EXACTLY!!!!! I am obsessed with finding new spoonie youtubers to watch since thats pretty much all I can do all day is watch youtube and network with spoonies on social media (I'm SpoonieSwift91)

@ellahardy8832

7 жыл бұрын

Oh my goodness! I just came from the 'Meet my Boyfriend' video to this, The Frey Life and the Mandeville Sisters are my favourite youtubers. I am so glad that the Mandev sisters are part of the Frey Life too! And Amelie, I agree!

I had to pause the video to make my protein drink, and I'm just standing there singing "I ain't got no needle in my chest, in my chest" and my son was like WHAT???????!!?

@l.a.1254

7 жыл бұрын

Valerie Foster LOL

As a NICU RN, I love your outlook and ability to find even the tiniest tidbit of good in any situation. You and Peter both have an intelligent grasp of your disease process and you keep it all, even the bad days, in perspective. You couldn't get a more wonderful and knowledgeable advocate and support than Peter. Of course, there's precious Ollie who gives more than you'll ever know. You all have my utmost respect for keeping daily life as "normal" as it can be despite the constant CF treatments intrusions . Thank you for allowing me to follow along on your journey with you from here in Ontario. Hoping you can tolerate the NJ feeds.

@rebeccamoon5766

7 жыл бұрын

Karen Jones My daughter was in the NICU last May, and I just have to say, NICU nurses are AWESOME! Thank you for all you do for your little patients, and their parents too

@nicukaren

7 жыл бұрын

Rebecca Moon Thank you so much for those very kind words, Rebecca! We NICU nurses absolutely love our jobs and it's so gratifying to hear sentiments like yours! One of my own grandsons had a bowel malformation and was admitted to my own NICU, and when he got sicker and needed more intervention, he had to be transported out to a different centre for surgery. He's a happy and healthy 2-year old now, but I've been able to experience the NICU from the perspectives of both the caregiver and the grandmother. Thanks again! Hope your daughter is doing well!

My partner has ms and is sick in hospital. We are discussing tube feeding-Mary your positivity is really helpful xx

Mary, your smile is precious just as you, Peter and Ollie are to all of us. I love it when you sing 'we're goin home.' It's so wonderful to see you home. God Bless ❤🙏

Thank you Peter for taking such good care of Mary! You both are such an inspiration to so many!

Mary I am so glad that you are home. Now Peter and Mary get some good rest. It is so inspiring how Peter takes such good care of you. Hugs to both of you.

Happy to see you got to go home. Both of you rest and take it easy. This is where pets need to learn to do the dishes and laundry.

It's so good to see Mary a bit more back to herself! You look so full of life and joy and it's a wonderful sight

Yay, you're singing again!!! I meant to tell you guys that I LOVE the new intro - it really captures how much your vlogging has grown and how inspirational and hopeful you are. Thanks for sharing the rough times and the good times. I've learned so much about CF and about staying positive. You all inspire me, as do your other subscribers. Keeping you all in my thoughts and prayers all the time.

Mary, what a brave woman you are! And I'm so glad you & Peter have each other & Oliver. Peter, what a wonderful husband you are! And Oliver, you're a great helper & quite the handsome dog! You both are such an inspiration. Many many blessings!

Praise the Lord, you're home!! Such a blessing. I look forward to your daily videos, such a blessing to me.

So I work at American eagle(a clothing store) and a lady came in looking for a purple shirt because her daughter has cf and She said today was awareness day so I asked her if she watched your vlogs and she said she does! What a small world! Love you guys and praying for you. ❤

Watching you set up your feed brings back a flood of memories for me. Our son has Cerebral palsy and had a g-button feeding tube as a baby. We used the same exact pump system to give him pumped breast milk. It will soon become second nature and you'll practically be able to do it with your eyes closed. ☺ so glad to see you at home, with your energy up!

YAY! home after hospital is always the BEST! once after my heart op my family pained a 'welcome home' banner and hung it up, it was lovely xx

My mom used to sing that "Good Morning" song to me as a kid when I just COULD NOT get out of bed! Thanks.

So wonderful to see you all perky and feeling better!! The pain has eased off.... so far so good with the new "fuel".... you are gaining.... you're energetic.... no needle in your armpit....and now you're home with beautiful anniversary photos, a beautiful pillow cover, and a neat mug that shows Ollie when hot!!!! How exciting!! It broke my heart to see you go through that rough time!! Thank the Lord, that is over and things are looking up!

@debbideanna8818

7 жыл бұрын

Seems to me people would buy an Ollie Mug!

Feeding tube backpacks are fantastic! I know a lady who converts standard backpacks to hold pumps. If you need it, decorate it!

I am so glad you're all at home together and feeling great!

So glad to see that you're feeling better! Hopefully it continues for days to come. Love seeing all the positivity and good energy from you guys 💜

I enjoyed the Frey Life musical! 😍

@ronderulijkummar7453

3 жыл бұрын

The Frye musical is absolutely delightful!

What a Saint of a Husband she has. And she’s coming along hopefully Awsome herself!

Literally cheered when you said you put on weight! That's so awesome.

I am so happy your all home! Mary you truly inspire me with the positivity you have about everything. home is where the heart is and your home. much love to you all.

So good to see you home Mary (and Peter and Bonesy)! The worst part is behind you. Getting used to a feeding tube is hard. I have a g-tube and at the beginning It was really difficult, but now a year later, its the best thing I ever did 💜

YAY!!! Hey Mary, so glad you are home!!! Glad you felt so awesome yesterday...I know those are rare days for you lately. Peter, you are an amazing young man...Mary couldn't have found a better soulmate...You both are so lucky to have one another. Love you both!!!

So happy that your home Mary, and feeling better. 🦋

Thank you! Your smile and positivity are just what I need right now! Having a pretty bad Crohn's flare and just found out I have CHF, but you help remind me to just take a step back be thankful for what is going good and what I do have. And I can only do what I can do! Life can be challenging but it is still what I me of it! Love watching you guys and the love you share! So excited for you both that you are home!

Your courage and strength amazes me. Mary you are so strong. You and your family are in my prayers!💕💕

So glad you were feeling well enough to go home! Lots of love!💕

Love seeing you with so much energy Mary! The ain't got no needle in my chest chant makes me laugh I love it! Good way to celebrate these things with chants. 😊 Always praying for you guys.

So glad your home and the pain is tolerable. Rest well everyone

Mary, you and Peter are truly an inspiration on so many levels. I have a close friend with C.F. and I have seen first hand the effects it has on a person's body but to go through every thing else on top of that and to stay so hopeful and happy is just a blessing. I will keep you both and Ollie in my thoughts and prayers at all times

Much love to all three of you! Glad to see you're home now :)

Congratulations on your homecoming! Glad to see things are looking up, and as always God Bless you both 🙏🏻

So glad you are home! You still have our prayers! Keep up the excellent work.

So happy to see you home! Hope things continue to go well.

I was like "PULL! PULL!" When you all were trying to take the cap off the extension... lol😂

So glad to see you home! Take care and get some rest!

Here is a tip from one Tubie to another spilling is inevitable, It will happen eventually. I still spill and mess up and I have been doing tube feedings for 26 years (my whole life) I have even once turned on my food without connecting it to my g-tube. I have gone to pour and managed to get it everywhere, I have had bags have wholes in them thanks to my cats, and I have had my bag disconnect from my extension tube before also. So it's going to happen no matter how hard you try, that is why I always pour my formula/fuel over a sink just in case. Good luck Mary

Welcome home sweet girl.. You seem better already. You needed that fuel.

@lstrickland109

7 жыл бұрын

janet stauffer oooiijjiikiii

Keep going Mary , I'm rooting for you and i will keep praying for you dear.May God good keeps you company in tough time.Thanks for showing us life on another angle , tough but still enjoyable.May your family be blessed.

I've been catching up on videos (was on vacation) and it was so nice to see you have some energy today, Mary! I've read some of the newer video titles so I know there's some bumps in the road ahead but I hope you're able to keep feeling more energetic than you have been these last few months :)

just started watching you and you make me feel as if I should be positive towards my treatment and be positive towards my disease and not be so negative thank you Mary ❤

Congratulations Mary On Starting To Feel Better 💜💖💜💖

YAY!! So happy you get to finally be home. I hope everything with the feeding continues to work out in your favor. Stay laughing 💞

Glad you're feeling a little better Mary. I hope tomorrow is even better.

So glad you're home, love you guys so much!

Mary I'm so happy to see you home and see your smiling face!! Keep on trucking you can do anything!!

My daughter, who has a g and a separate J-tube, loves watching your videos. She uses a water pack backpack that joggers use. We got her backpack at Target. It works really well because it has a place to hang the feeding bag and a hole in the backpack to put a tube through. It was cheaper than the ones on Etsy and it lasts a lot longer than the one her medical supply company sent. You are in our prayers.

I follow about 10 vlogs that I watch every evening and everytime I watch yours which is one of my favorites I find myself getting sleepy not because its boring but because you both have such soothing voices!! So happy Mary is home and feeling a bit better.

So happy your home! You are both beautiful and inspiring people. Thanks for sharing your journey with us!

Glad to see Mary so energetic and happy!

I'm so happy for you both."Their's no place like home"

I am so glad Mary is going home! I was worried the other day when she was in a lot of pain. Hope that continues to heal!

Glad you got to go home Mary and Peter! Love you guys so much. It's good to see your new video come up everyday.

We all are so happy to see you guys home. I am sure you guys are very excited to be home, in your own bed, and back into the "Frey Life Routine" at home. I am continuing to pray for you guys. I'm also another person that loves to decorate/bedazzle a lot of medical stuff and non-medical things as well. We have to add some cheer to our lives that can be challenged by health problems, treatments, etc. Hope you guys can have a restful weekend at home. Take care and look forward to seeing you guys tomorrow!

I think you have been looking terrific! So much more energy. Maybe a crafting day in order is needed!

I am so happy that you got to go home! Keep moving forward 🤗

I'm so glad you're home 🏡🤗 Mary you're looking really beautiful ( like always) I can see it in your skin color, looks like you've got a beautiful glow, I'm sure your feedings are giving you the much needed fuel. Keep up the good work, my prayers and thoughts are with the 3 of you. Love and hugs to the 3 of you, see you tomorrow!

Yay!!! I'm so happy you guys are back home!!! Sending lots of hugs!!

So happy y'all are home and you had a good day with some energy!!

It is so good to see you at home! YAY! I am hoping your throat will heal better now that you are at home and it is awesome to hear you are gaining weight Mary. Keep up the great work you are doing girl!

So happy to see you home. Sweet dreams💕

So glad you are home and I pray everyday gets better and better. Much love to you both :)

So lovely to see you, dear beautiful people. God bless, bless, BLESS you!!

Wow look at the difference of 5 years!! Praise God! 🙌🙌 Idk y this video popped up in my suggested but I'm glad it did bc it reminded me of the miracles God can do! My health n my husband's has declined so much for so long n it can be disheartening n overwhelming at times. But I've watched your videos for many years now n I still find strength in all your sayings like "don't forget to laugh everyday" n esp "do what you think you can't do". Your joy n faith in God is infectious! Thank you Mary and Peter for sharing your world with us and inspiring n encouraging us all! 💜 🌸 May God bring you n your family good health n many blessings this new year! God bless!! 🙏

It's a relief to see you smiling like that Mary :) I hope that your throat will get better soon :) Sending prayers! Anna

So glad you are home Mary 👏🏻🐝🙏🏻🐝👏🏻🤗 You may not feel much better, but you look much better. Praying for you ❤️

You look so much better and stronger. It's a combination of tube fuel and all the prayers and love coming to you.

HAPPY DAY!!!!! Love you kids from afar and asking God to continue to help your recovery

Happy to have you home!

Yay! So glad you're home!!

Mary we use the same pumps at work and it really does prime faster if you use the prime buttom on the pump. Heads up the tube can come undone. Look at the end of the tube where the tube meets the cone,it unscrews. Seems like plugging and unplugging the tube makes it come unscrewed.

I really like how you take us step by step through your daily life. thankyou❤❤

I'm so happy you are home ❤ I love how you are positive in everything you go through. Strong Woman❤❤

Glad to see you guys are home

Good news Mary and Peter. God continue to bless you

Waahhoo you are home, so happy for you and you can tell that something is helping because your eye's are even brighter and the energy was so good to see.....

Yay! I'm so glad you're home now! Congrats! :)

Found your channel just a few days ago. I have learned so much about CF from your videos. Thank you!

So happy to see that you got to go home.

So happy that you are home. You both are too cute together. Praying for you all daily. ♥♥

I am so happy that you guys are home now. It is inspiring at how well you take care of your body. Have a beautiful day. See you tomorrow

so glad you're home. and it looks like you're feeling better. progress!

I'm so glad you got to go home Mary and Peter. Love you so much I enjoy watching your video everyday.

Glad you're home! I got my decal in the mail today! I can't wait to get it on a shirt!!

Love your positive outlook Mary - you are amazing! 🙌💕

Hey Mary, you are so strong. Keep on fighting. I admire you very much. I watch your videos everyday and pray for you.

I'm so glad you got to go home! I can defidentaly tell you have more energy😊

I'm so invested in your journey Mary I woke up this morning and thought I wonder how Mary is feeling .. I hope better ... people care

it makes me so happy for you guys when you sing about going home! ❤

Glad you're back home! ❤️

Thanx for explaining why Mary can not have a PEG-tube in her stomache. I am happy to see both of you at home again! Jihooo!!!! Mary i am so proud of you fighting hard all the time but you are always smiling! Peter, you do a fantastic work suporting your beautiful wife. I have never seen so strong love as i see between you two. Lots of hugs from Gotland Sweden here!

Mary it is so good to see you smile 😁

You're such incredibly amazing wonderful loving positive strong brave people. So much love to you !!! May God continue to bless you 🙏🏼

So glad you are home!!

Yay for being home! ❤️