I'm supposed to get ready to go to Physical Therapy, but everything is on hold so I can watch this. I've been having consecutive panic attacks and these videos just give me so much joy.
Hey Mary! I'm a nurse that works with children who have g-tubes in long term/continuous care. We call it formula or milk! Or sometimes just by the brand name- Nutren or whatever it may be. I think it depends on the child and what they like us to call it- some don't care that we call it formula, but others feel like "babies" when we call it formula so we call it their milk. Not that this matters but sometimes it catches me off guard when you call it your "fuel"!
My mom brought home a dog last week (8 month old giant schnoodle), his name is Percy, and whenever Oliver squeaks his toy Percy goes nuts haha. Hope you are having a great Monday!!
Every time I see this intro, it makes me so extremely happy. When Mary just throws her arms up with a huge smile on her face. It's like her way of saying "HELLO WOLD AND I AM ALIVE AND WELL" 😂
When I was 15 I had a really painful cyst on my ovary. My boyfriend at the time named it "Jeffrey", it made it easier to talk about in public and at school, just being like "oh man, Jeffery is being a real pain today" so my bf would know if I needed to go to the nurses room or whatever. Jeffery ended up being removed, in a way it was like losing a friend, but a friend who caused lots of pain and tears 😂
I love the way you say "Peter" when he says something goofy like moving to Chicago. It's so cute. There's a gal on another vlog that uses a similar voice with her husband. Love you guys. Congratulations on the success of your fund raising for CF.
I don't use fancy names for all my things, my feeding tube is my tube or button. And my feeding bag is just my food bag, and my formula is just my food.
I wonder that the formula "tastes like" probably not very good. I would want to you to do a "formula taste test video" where you and Peter have a small amount of the formula to taste and tell us what it is like!!! I mean you did a baby food taste video a few years ago.
Marieke D well let's be thankful the jejunum doesn't have taste buds xD but on a serious note, they probably don't bother much with the taste because it isn't taken orally anyway, is it?
Jessica Shulman Actually some of the most commercially available formulas have added flavouring. Usually vanilla LOL. I think Mary's on Peptamen. It's vanilla flavoured and tastes okay. Not great. But there are downright disgusting formulas out there, like elemental ones.
I don't know if you read my comment several video's ago but I had told you about the cloth back that my daughter uses so the tubing does not hang all over the place so that things get snagged on it. That will really help avoid leaking - she used to have all sorts of problems with caps popping loose and leaks developing and it was often quite messy. Her nurse is the one that told us keeping the tubes up and out of the way so they don't hang outside of clothing and sway around so they get sat on and bump in and get snagged on things really prevents a whole lot of issues. Once she started using the bag to keep tubing out of the way she stopped having leakage problems, kinks, and even pain around here site.
In the middle of a fibro flare, lying in bed with my service dog and my service dog prospect, catching up on your videos. You guys make me smile and allow me to (kind of) forget the pain for awhile! P.S. Honeydew bubble tea is my favorite!!
Maybe liquid luck (if you're in a Harry Potter mood ;) ), or maybe your energy provider? Because you need it but it can be a pain too 😂 Hope you are all doing OK :) x
I told my partner he had to name his feeding tube - it was difficult for me to come to terms with it and thought making light of it would help us both. He called it alien after the film and it makes me laugh 😂. He has had his feeding tube for three months now and due to get it changed for the first time. For the first time in years he has gained a little weight and it's so nice that if he's not hungry enough to take food orally we can top up with his milkshakes as we call them.
I'm glad you have far surpassed your goal! I really wish we had an bubble tea place near me because I sure would try it! The livestream last night on instagram was really sweet 😊 Thanks for incorporating people who do not have Facebook, but have instagram😊
Mary, I know this was a while back but if that's still an issue, could you make a surgical tape tag on the giving set side and another on the tube extension side, and use a couple of tiny safety pins to pin the two tags together, making it harder for them to slip, or be joggled, apart?
You guys are torturing me with this video! I am from the northern chicago suburbs, but I am away at school in St Louis right now and all I have been craving is a Portillos Beef and Cheddar Croissant! I was facetiming my friend this past week and she had just picked up her Portillos for her lunch break and was eating it in front of me. Only 5 more days and 4 finals until I get to enjoy it once again!
I kept hearing you talking about going into the hospital for a "tuneup" and I thought you were saying tuna. I was trying to wrap my mind around why a CF patient would call IV antibiotics tuna. Hahaha then it hit me!
I don't know if you'll read down this far into be comments, but in curious about your insurance coverage. I know peter pastors a church and I know pastors don't have the greatest coverage. Did your parents get some kind of coverage for you when you and your sister were born and confirmed to have CF?
Oh I'm so sorry! I didn't even think about how it would seem rude I was just curious because of how often you had to be on medication and have hospital stays. I feel terrible putting it out there now. Just curious wondering if it's a hardship that I could possible help with in the future because I have a very close friend who just had a baby diagnosed with CF and am burdened for her parents. Please remove if you feel the need. Again, I'm sorry I didn't think.
I'm actually really curious too, not for anything other than the fact that the US health care system has been in the news so much lately. I live in a country with universal health care so I always wonder how people over there do it. It's invasive but also brings these issues to light and how they affect real people who are ill.
I have had a feeding tube since I was 3 and I also have cystic fibrosis. I call the formula milk because when I was younger it looked like milk to me. It's easy to say and sounds normal when you are in public👍🏻
I love your whale painting so much, but you should so paint a manatee and a sloth those are my top two favorite animals... I think your paintings are beautiful that is why I think a water color painting of a Manatee would be awesome. Also your hello this morning cracked me up :) Oh otter is my third favorite animal and my fourth is a unicorn
Oooooh, Bubble tea. Waaaaah!! I do miss that tea! I really understand what you meant when you said that you are good at faking it, until your body refuses to let that happen! I am good at putting a smile on my face and saying I feel great, when inside there is so much suffering! I'm glad I'm able to do it, because it does allow me to enjoy some activities I wouldn't typically go to. Do you know what I mean?! Maybe not. I can't think straight after that Bubble Tea!!! YUM!!!! ;)
suggestion for a name for the bag itself: PBJ..Pump Bag for your Jejunum. And maybe liguid gold for the drink because it's helping you gain, hopefully..Good Luck and Thank you both for your videos!
I think you could call it your fighter juice. Or think of one of those names like when you order a smoothie, "I'll have a razz-a-ma-taz please". The name could change with your mood! Cheering on from Chicago!!
Just a weird idea, Can't you just put some tape over the part that popped open? That way you can still use it by taking the tape off but it wouldn't leak as fast.
she could, but it;s not a big deal, it's gonna happen. It's very rare when it does, have to make sure it's tightly closed. I use the same supplies, it's just gonna leak sometimes
I am SO WARMED By the smiles at the end of each vlog. Also, I LIVE by CHEEZY sayings & encouraging statements. There are, as You know, Many in the Bible. We Sicklings NEED attitude adjustments regularly, and are INSPIRED by "cheese" talk.:) Love the 3 Freys.:)
have you tried the clamps for your tube yet? it was like heaven when I finally learned of them. I don't do feeds but use the clamps on my drain bags! MUCH less leaking! I've gotten used to suddenly being "wet" in public. Haha. even now with I ut feeds it I go to long without venting my tube will literally pop open because it wants OUT!. I have the GJet tube by AMT. the clamp's order # "should" be on the package when you get the extensions for the miniOne. I'll try to remember to look when I get a minute too.
When you took a drink of water and Peter asked if you had a hole in your face, it reminded me of the movie Airplane where the guy talks about his "drinking problem". Every time he tries to take a drink of something he just pours it down the front of him when he puts it to his mouth 😂😂😂
I set up feeding tubes at work and some people have the continues feed or evening feed or afternoon. But we have one that the feed is 3 times a day for 1 hour over breakfast lunch and dinner so I just call it breakfast or which ever 'meal' it is ahaha
This is a typical comment but I lost a very dear loved one today. I know that you are praying people if you would remember me when you pray. I am brokenhearted. My chronic illnesses are preventing me from even being able to attend the funeral which is tearing me apart. Thanks and I really do love you guys.
Your video made me laugh today! Thank YOU both for being an example of a godly couple that sticks together that is an awesome testimony!! Life is the best when we follow Jesus!
I just love your days 😍, I work with a woman who has ms and she has J-tube, but she has the tube up under the shirt so that she doesn't happen to pull it apart. wish you a wonderful autumn. love from Sweden
I would call it something fun like "my milkshake". Then I could sing "my milkshake brings all the boys to the yard".
Cora-lee Lyster that idea is super awesome! xD
Cora-lee Lyster I was going to suggest "soup" but I like your "milkshake" idea better!!
Cora-lee Lyster ya but then you wouldn't want a real milk shake after that lol.
LOL! I think the song could go "my milkshake brings all the cals [calories] to the bowels" 😂😂
I'm supposed to get ready to go to Physical Therapy, but everything is on hold so I can watch this. I've been having consecutive panic attacks and these videos just give me so much joy.
I totally just took a break from studying for finals to watch this. I love you guys
Emily Bottinick same
Emily Bottinick Good luck with finals!
Emily Bottinick I'm watching while I'm taking a hot anti-cold bath because my throat is super dry and raspy :(
Emily Bottinick same here!
Wherever you are studying, good luck on your finals!
Hey Mary! I'm a nurse that works with children who have g-tubes in long term/continuous care. We call it formula or milk! Or sometimes just by the brand name- Nutren or whatever it may be. I think it depends on the child and what they like us to call it- some don't care that we call it formula, but others feel like "babies" when we call it formula so we call it their milk. Not that this matters but sometimes it catches me off guard when you call it your "fuel"!
My mom brought home a dog last week (8 month old giant schnoodle), his name is Percy, and whenever Oliver squeaks his toy Percy goes nuts haha. Hope you are having a great Monday!!
Haha I'm getting my "tuneup" at the moment with my port, her name is Portia!!
Perfect Portia to get your perfect potion of meds :)
I named my new liver after my transplant. His name is Livingston, I'm pretty sure he's a cranky old British man.
Every time I see this intro, it makes me so extremely happy. When Mary just throws her arms up with a huge smile on her face. It's like her way of saying "HELLO WOLD AND I AM ALIVE AND WELL" 😂
When I was 15 I had a really painful cyst on my ovary. My boyfriend at the time named it "Jeffrey", it made it easier to talk about in public and at school, just being like "oh man, Jeffery is being a real pain today" so my bf would know if I needed to go to the nurses room or whatever. Jeffery ended up being removed, in a way it was like losing a friend, but a friend who caused lots of pain and tears 😂
I love the way you say "Peter" when he says something goofy like moving to Chicago. It's so cute. There's a gal on another vlog that uses a similar voice with her husband. Love you guys. Congratulations on the success of your fund raising for CF.
I don't use fancy names for all my things, my feeding tube is my tube or button. And my feeding bag is just my food bag, and my formula is just my food.
I love the Frey life! Thank you Mary and peter for being such an honest and inspiring family!
I wonder that the formula "tastes like" probably not very good. I would want to you to do a "formula taste test video" where you and Peter have a small amount of the formula to taste and tell us what it is like!!! I mean you did a baby food taste video a few years ago.
Jessica Shulman it tastes horrible . like a medicinal shake blah
Jessica Shulman it tastes horrible, even the vanilla flavoured one.
Jessica Shulman I've tasted mine before. It's awful
Marieke D well let's be thankful the jejunum doesn't have taste buds xD but on a serious note, they probably don't bother much with the taste because it isn't taken orally anyway, is it?
Jessica Shulman Actually some of the most commercially available formulas have added flavouring. Usually vanilla LOL. I think Mary's on Peptamen. It's vanilla flavoured and tastes okay. Not great. But there are downright disgusting formulas out there, like elemental ones.
I don't know if you read my comment several video's ago but I had told you about the cloth back that my daughter uses so the tubing does not hang all over the place so that things get snagged on it. That will really help avoid leaking - she used to have all sorts of problems with caps popping loose and leaks developing and it was often quite messy. Her nurse is the one that told us keeping the tubes up and out of the way so they don't hang outside of clothing and sway around so they get sat on and bump in and get snagged on things really prevents a whole lot of issues. Once she started using the bag to keep tubing out of the way she stopped having leakage problems, kinks, and even pain around here site.
I love how up beat Toby Mac's songs are. The messages are always GREAT! I've been a fan for over 20 years. It is nice to hear you singing along.
How about "Go Juice"! Since it helps ya get up and go.
muffet90 I was going to suggest go go juice or super juice.
In the middle of a fibro flare, lying in bed with my service dog and my service dog prospect, catching up on your videos. You guys make me smile and allow me to (kind of) forget the pain for awhile!
P.S. Honeydew bubble tea is my favorite!!
Light Shine Bright is one of my favorite songs!!! Especially when I'm stuck at home with a really bad migraine.
I really think the new feeds are helping you immensely. Your brain seems sharper, and you seem more energetic, even though I know you're struggling.
Maybe liquid luck (if you're in a Harry Potter mood ;) ), or maybe your energy provider? Because you need it but it can be a pain too 😂 Hope you are all doing OK :) x
Just call it your lunch bag :)
I have a feeding tube as well and that part ALWAYS pops off on me! is so annoying😂
You made my day when I heard Toby Mac! I listened to him when he was in DC Talk when I was a teenager and now my kids adore him as well!
"We don't like develop a friendship with them" hahaha Peter!!!
I told my partner he had to name his feeding tube - it was difficult for me to come to terms with it and thought making light of it would help us both. He called it alien after the film and it makes me laugh 😂. He has had his feeding tube for three months now and due to get it changed for the first time. For the first time in years he has gained a little weight and it's so nice that if he's not hungry enough to take food orally we can top up with his milkshakes as we call them.
Debbie Sanderson i
call it your engery drink
mary haynes go go juice 😂
Don't worry, Peter..one can never be too sappy when talking about a sweet puppy dog like Ollie
Love you Mary, Peter, and Ollie. I'm glad I get to watch you everyday. You put a smile on my face.
pictures from the photo booth look really cool , looks like every body was having a good time !!
Your engagement is my 1st wedding anniversary! Its a good day!
You could call it your 'bag o mush' :)
I love it how dogs get up to stretch, and then flop back down afterward.
I love how Ollie Boy gets excited to go somewhere 😁😁😁
8:51 "PEEEEE-TERR!" XD
I'm glad you have far surpassed your goal! I really wish we had an bubble tea place near me because I sure would try it! The livestream last night on instagram was really sweet 😊 Thanks for incorporating people who do not have Facebook, but have instagram😊
Always look forward to watching your vlogs every day! Love you guys! 💜
totally thought you said tuna instead of tune up. 😂😂
Samantha Rose Me too
I thought that's what she said also! I was like who goes to the hospital for tuna?
Yup me too!
hope you're having a blessed day.
Mary, I know this was a while back but if that's still an issue, could you make a surgical tape tag on the giving set side and another on the tube extension side, and use a couple of tiny safety pins to pin the two tags together, making it harder for them to slip, or be joggled, apart?
Call it your 'Mana' like the health and energy provider in video games 🎮 and like in the bible 📖 as well 🙂😁😊
Christy Mudaliar I like this! 😊👍
Actually God provided manna (or mana) for the Isrealites as the wandered the desert to sustain them, so actually this would be perfect
Mana is MY FAVORITE!!! Very POSITIVE!!!
And We ARE IN OUR OWN sort of wilderness.:(
anyone else love when Mary calls it her "combler"?! (favorite word- and now I call it that)
So glad you mentioned Portillo's!! One of my favorite places ever!! 🍟🥙🌭
listened to Toby Mac all this morning , he has some good songs !
Peter, I don't call it fuel, I call it gogo juice. Because you can't gogo without it!!!
There's another 'Peter' to add to the compilation!
You guys are torturing me with this video! I am from the northern chicago suburbs, but I am away at school in St Louis right now and all I have been craving is a Portillos Beef and Cheddar Croissant! I was facetiming my friend this past week and she had just picked up her Portillos for her lunch break and was eating it in front of me. Only 5 more days and 4 finals until I get to enjoy it once again!
Liquid lunch
Your skin is flawless, Mary!
I kept hearing you talking about going into the hospital for a "tuneup" and I thought you were saying tuna. I was trying to wrap my mind around why a CF patient would call IV antibiotics tuna. Hahaha then it hit me!
we call the formula "go go juice" but i like someones comment calling it energy pack.
I also have a J-tube and an infinity pump and I was watching this while priming my pump and when your pump beeped i thought it was mine!
I don't know if you'll read down this far into be comments, but in curious about your insurance coverage. I know peter pastors a church and I know pastors don't have the greatest coverage. Did your parents get some kind of coverage for you when you and your sister were born and confirmed to have CF?
SKE1017 Dude, it's a valid question. She wasn't being rude about it....unlike you.
Oh I'm so sorry! I didn't even think about how it would seem rude I was just curious because of how often you had to be on medication and have hospital stays. I feel terrible putting it out there now. Just curious wondering if it's a hardship that I could possible help with in the future because I have a very close friend who just had a baby diagnosed with CF and am burdened for her parents.
Please remove if you feel the need. Again, I'm sorry I didn't think.
SKE1017 they share everything else, I'm curious too..
Belinda Vanowen I cannot speak for Mary, but my sister who had CF was on Medicare basically from birth.
I'm actually really curious too, not for anything other than the fact that the US health care system has been in the news so much lately. I live in a country with universal health care so I always wonder how people over there do it.
It's invasive but also brings these issues to light and how they affect real people who are ill.
so early!! love you guys!! i love learning more and more about cf through you.
omg i love you guys sooo much. feel better Mary!!
On your engagement day, do you mean you went to the Yolk retaurant in Olgilvie station? I LOVE that place!
the finger snapping and hand waving is on point :-)
I have had a feeding tube since I was 3 and I also have cystic fibrosis. I call the formula milk because when I was younger it looked like milk to me. It's easy to say and sounds normal when you are in public👍🏻
I love your whale painting so much, but you should so paint a manatee and a sloth those are my top two favorite animals... I think your paintings are beautiful that is why I think a water color painting of a Manatee would be awesome. Also your hello this morning cracked me up :) Oh otter is my third favorite animal and my fourth is a unicorn
Oooooh, Bubble tea. Waaaaah!! I do miss that tea! I really understand what you meant when you said that you are good at faking it, until your body refuses to let that happen! I am good at putting a smile on my face and saying I feel great, when inside there is so much suffering! I'm glad I'm able to do it, because it does allow me to enjoy some activities I wouldn't typically go to. Do you know what I mean?! Maybe not. I can't think straight after that Bubble Tea!!! YUM!!!! ;)
suggestion for a name for the bag itself: PBJ..Pump Bag for your Jejunum. And maybe liguid gold for the drink because it's helping you gain, hopefully..Good Luck and Thank you both for your videos!
You could call your formula "Mary's special drink" even though you don't drink it. LOL
I think you could call it your fighter juice. Or think of one of those names like when you order a smoothie, "I'll have a razz-a-ma-taz please". The name could change with your mood! Cheering on from Chicago!!
What is the name of the song you were playing and dancing to in the car?
I'd be inclined to say, "I've filled up my cauldron!"
I've also been reading Harry Potter to my six year old for the last year. We are almost done. 😂
Haha a lovely conversation in the car.
I love it when your doing a live stream you and peter mary you look like your feeling better im so glad
Your strapping on the old feed bag.....:)
Love you guy's.
I thought you were saying "Tuna" not tune-up. And I was so confused to why a hospital visit was called a fish 😂
Just a weird idea, Can't you just put some tape over the part that popped open? That way you can still use it by taking the tape off but it wouldn't leak as fast.
she could, but it;s not a big deal, it's gonna happen. It's very rare when it does, have to make sure it's tightly closed. I use the same supplies, it's just gonna leak sometimes
How about... snack sack! Snackpack backpack! Too much of a tongue-twister! :P
Lol. I thought you said Tuna not tune up. I was thinking, why tuna for IV's.
I am SO WARMED By the smiles at the end of each vlog. Also, I LIVE by CHEEZY sayings & encouraging statements. There are, as You know, Many in the Bible. We Sicklings NEED attitude adjustments regularly, and are INSPIRED by "cheese" talk.:) Love the 3 Freys.:)
Love that Toby Mac song! So catchy! We have the CD. Hm I'm gonna have to try bubble tea someday (don't know what Boba is though)
her "nutrients" accent sounded Russian hahaha!!! Love you guys!
love the photo booth pics
Where did you get the pink flower blanket my daughter would love it!
I wish I lived closer to try your restaurant recommendations.
Please make a shirt full of Inspirational Mary quotes, that would be awesome haha!
have you tried the clamps for your tube yet? it was like heaven when I finally learned of them. I don't do feeds but use the clamps on my drain bags! MUCH less leaking! I've gotten used to suddenly being "wet" in public. Haha. even now with I ut feeds it I go to long without venting my tube will literally pop open because it wants OUT!. I have the GJet tube by AMT. the clamp's order # "should" be on the package when you get the extensions for the miniOne. I'll try to remember to look when I get a minute too.
When you took a drink of water and Peter asked if you had a hole in your face, it reminded me of the movie Airplane where the guy talks about his "drinking problem". Every time he tries to take a drink of something he just pours it down the front of him when he puts it to his mouth 😂😂😂
You Guys are awesome Love the relationship you have.
How about "Your Cocktail"? Mary's Tan Tea! 😂. Mary's Boston Tan Tea!😍
I know that this has nothing to do with this video but are the "do what you think you can't do" only for wall and car decals? I was just curious
I set up feeding tubes at work and some people have the continues feed or evening feed or afternoon. But we have one that the feed is 3 times a day for 1 hour over breakfast lunch and dinner so I just call it breakfast or which ever 'meal' it is ahaha
somebody should keep track of how. many times mary says PETER!!
I thought you were saying "tuna" when you were talking about tune up. I was very confused 😂😂😂
Love love the purple headband. 👍👍👍
Let's all cheer for Peter!
This is a typical comment but I lost a very dear loved one today. I know that you are praying people if you would remember me when you pray. I am brokenhearted. My chronic illnesses are preventing me from even being able to attend the funeral which is tearing me apart. Thanks and I really do love you guys.
Mary how do stay so positive ?
Yall got engaged on my birthday! ♥ I know nobody else cares but I thought it was cool! lol
I love light shines bright!!
call it Subsistence, Chow, Grub
Your video made me laugh today! Thank YOU both for being an example of a godly couple that sticks together that is an awesome testimony!! Life is the best when we follow Jesus!
How about energy bag
So it's formula...think of a formula one car and how awesome they are! Just like u! 😊🏎
Percy the Persnickety PICC. I completely agree. I also mask my feelings & symptoms, but when I hit that wall I'm done.
I liked your comment about naming your j tube! We called my sons his "Mickey Mouth"!
I just love your days 😍, I work with a woman who has ms and she has J-tube, but she has the tube up under the shirt so that she doesn't happen to pull it apart. wish you a wonderful autumn. love from Sweden
If you like that song look up Hollyn. she sings with Toby in that song and all her music is amazing!