Winter your such a wonderful older sister to Tori .Your family must be soo proud of you .I can relate to what your family is going through .I know what it's like to help care for a siblings with a chronic illness .I used to help care for my sister until she passed away last summer.Over the course of 5 years I helped my mom care for my older sister .My sister had a j- tube she was on a feeding tube 24 hours per day . I wish you and your family the best .Tori honey I hope you get better soon.
I'm 14 Nd I have cf my drs wanted me to have the tube but. We found out any boost plus there is 360caleries per bottle and I just drink 3-4 of them a day it's wayy better than the tube I never wanted that so to anyone I highly suggest that u will see a difference after te 1st month-3
@luvlissy Thank you for your suggestion. Tori's feeds are usually only at night so they do not interfer with her life during the day. And we actually like the tube because it is not forcing her to drink or eat all the calories she has to have in order to gain weight.
@kelmex2 We call it her tie-around... lol It helps her feel confident that the tubing is not going to move around too much. It is something my mother-in-law made for Tori when she first got her mic-key. It is basically an oval piece of fabric with a thin layer of padding in between. I just used more fabric for the in-between, so it was basically 4 pieces of fabric sewn together. Than I attached the tie around pieces.
Hello. I have a pulmonary problem but not that kind. I have few suggestions for you guys these are the things i use to help me out but im just giving suggestions.
Psi compressor. Its a machine that sits on a desktop it gives me moist all night when i sleep. It feels so good to feel so refreshed every mor ing i love it. It uses the blue moist hose wet bottle steril water oxygen type masks and a cpap connector for my 50 foot since im on oxygen
i was just curious where you got the cover that she wraps around her stomach? my daughter also has a button and it leaks during her overnight feeding which has caused many pj's to be stained with pedisure. i would love to get something like that.
also someone else had posted about the mediation port opening causing it leak all over the bed. we had that problem in the past and we've been using white cloth tape to hold the medication port closed so it doesn't slip open.
@emily6281 Tori got her first wrap at the hospital. The nurses gave it to her when she first got her mic-key button. Then memaw made a few more for her and from there I took over. It is a very simple design. How old is your kiddo? Second thing is there is a blog I follow and the mom got a neat calmp thing to eliminate the tape issue. The thing is called a AMT clamp. You can google it. the cost is about $10.
My daughter is 15 mths old and Just got a GT to help her gain weight. She was born at 26 weeks at 1 pound and 4 ozs. She was Dx with failure to thrive and GERD. Your girls r awesome. you must b very proud.
i got a feeding tube too, and a portacath and everything gets tangled at night lol when i have the feed, antibiotics and oxgen all goiing... which is every night lol
img i have cf and i am getting the gtube. im 13 and im getting the tube on the 18th of november. i also take the pills (ultrase mt12) but i can take all of the pills at once...lol. i am a bit nervous and excited about getting this. maybe i will become a catcher on my baseball team if i gain enough wait... WHO KNOWS!!!!!
What instigated the feeding tube? My daughter, Violet is 4, and just does NOT gain weight, but she doesn't eat. She just never seems to have an appetite. I am so fearful of the feeding tube.. but the doctors don't seem to think she needs one.... yet. So just wondering... Your girls are so awesome. I love the Winter is so involved.
Tori has cystic fibrosis, this disorder does not just enlist many lung problems, it causes digestive problems and people with this disorder do not absorb enough calories needed for gaining weight and maintaining an healthy, appropriate weight.
Tori is diagnosed as failure to thrive. She does not eat enough calories during the day to gain weight. She only eats enough to sustain her. So she has her feeding tube to help her gain weight.
i have a feeding tube. i have cf just like Tori. The pump Tori uses is really old fashioned compared to mine though. Mine doesnt take as long to set up, its a tiny purple pump =]
I can imagine you are so proud of both of your girls. I am and I don't even know them! LOLOL. It's awesome that Winter knows how to set up the pump and I am equally impressed that Tori is so "okay" about her tube and hooking herself right up.
Good job with the video, it's so important to educate people on these things.
WOW that is awesome that Winter does that for Tori. My 2 boy and girl. Fight so much and it tears my heart up. I showed Cassi 10 this video hoping she will understand his illness more and treat him better. She has resentment. They are 4 years apart. I love the closeness of your 2 beautiful girls.
Thank you so much for the sweet comment. But please don't be fooled. Winter is not always awesome with herr sister. There are times that they fight... hopefully it won't become a permanent thing.
Oh my goodness, your girls are beautiful! They have such a special bond too! That is amazing that Winter knows exactly what is happening to Tori and what she needs. That is very sweet.
What a great sis! My son helps his sister with her mickey button too, she is only tube fed. The worse part is if the extension comes open at night (dumb med port!) and feeds her bed instead of her!
I have recently found your vids and didn't realize until now Tori had a mickey too! Winter sure is a great sister. Its nice to see that kind of bond. Very heart warming
We now lay ours in emesin basin I swiped from he hospial, if it comes open it will all go in it, our daughter is toally inactive so I don't have to worry about her rolling on it or moving it
@Momoftwinsplus1 there is a blog I follow and the mom got a neat calmp thing to eliminate the tape issue. The thing is called a AMT Clamp. I was able to google it and it was the first on the list.
wow! I'm a nursing student who came online to see some demonstrations as to how this is done to refresh my memory, but I didn't expect to see this. This is truly a beautiful movie and you have a very special family. Keeps your heads held high and I'll keep you in my prayers.
You have been so richly blessed to have children who truly love eachother so much. God Bless
pepsiann 4 months ago
@pepsiann Thank you
krystalmike1999 1 month ago
Winter your such a wonderful older sister to Tori .Your family must be soo proud of you .I can relate to what your family is going through .I know what it's like to help care for a siblings with a chronic illness .I used to help care for my sister until she passed away last summer.Over the course of 5 years I helped my mom care for my older sister .My sister had a j- tube she was on a feeding tube 24 hours per day . I wish you and your family the best .Tori honey I hope you get better soon.
TheBne123456 6 months ago
@TheBne123456 Thank you from Winter. We are sorry for the passing of your sister.
krystalmike1999 1 month ago
I'm 14 Nd I have cf my drs wanted me to have the tube but. We found out any boost plus there is 360caleries per bottle and I just drink 3-4 of them a day it's wayy better than the tube I never wanted that so to anyone I highly suggest that u will see a difference after te 1st month-3
luvlissy 9 months ago
Respond to this video...
krystalmike1999 9 months ago
@luvlissy Thank you for your suggestion. Tori's feeds are usually only at night so they do not interfer with her life during the day. And we actually like the tube because it is not forcing her to drink or eat all the calories she has to have in order to gain weight.
krystalmike1999 9 months ago
@krystalmike1999 hello
you are great doing all of this
have you considered hyperalimentation ?
silentfades 9 months ago
@kelmex2 We call it her tie-around... lol It helps her feel confident that the tubing is not going to move around too much. It is something my mother-in-law made for Tori when she first got her mic-key. It is basically an oval piece of fabric with a thin layer of padding in between. I just used more fabric for the in-between, so it was basically 4 pieces of fabric sewn together. Than I attached the tie around pieces.
krystalmike1999 1 year ago
Hello. I have a pulmonary problem but not that kind. I have few suggestions for you guys these are the things i use to help me out but im just giving suggestions.
Psi compressor. Its a machine that sits on a desktop it gives me moist all night when i sleep. It feels so good to feel so refreshed every mor ing i love it. It uses the blue moist hose wet bottle steril water oxygen type masks and a cpap connector for my 50 foot since im on oxygen
I also have in my room a giant liqued oxygen tank
Appleipodzrulez 1 year ago
@Appleipodzrulez Tori's lung function is ok right now but thank you for your suggestions
krystalmike1999 9 months ago
hi ,
i was just curious where you got the cover that she wraps around her stomach? my daughter also has a button and it leaks during her overnight feeding which has caused many pj's to be stained with pedisure. i would love to get something like that.
also someone else had posted about the mediation port opening causing it leak all over the bed. we had that problem in the past and we've been using white cloth tape to hold the medication port closed so it doesn't slip open.
emily6281 1 year ago
@emily6281 Tori got her first wrap at the hospital. The nurses gave it to her when she first got her mic-key button. Then memaw made a few more for her and from there I took over. It is a very simple design. How old is your kiddo? Second thing is there is a blog I follow and the mom got a neat calmp thing to eliminate the tape issue. The thing is called a AMT clamp. You can google it. the cost is about $10.
krystalmike1999 1 year ago
lovely and helpful video thank you.. my so is getting the same feeding tube as well..
ladycateyes 1 year ago
I am 17 years old and I have cystic fibrosis, I recieved my first g- tube about 5 years old.
celestpwll 1 year ago
@celestpwll Do you think that you will continue to keep the g-tube?
krystalmike1999 1 year ago
My daughter is 15 mths old and Just got a GT to help her gain weight. She was born at 26 weeks at 1 pound and 4 ozs. She was Dx with failure to thrive and GERD. Your girls r awesome. you must b very proud.
nennita1981 1 year ago
@nennita1981 I am very proud of them. They know so much more than I give them credit for.
krystalmike1999 1 year ago
i got a feeding tube too, and a portacath and everything gets tangled at night lol when i have the feed, antibiotics and oxgen all goiing... which is every night lol
xxKiWishufflexx 2 years ago
@xxKiWishufflexx sounds like you wake up like a cat being stuck in a ball of yarn... :)
krystalmike1999 1 year ago
@xxKiWishufflexx Tori has a port-a-cath now too.. any tips on things not getting tangled?
krystalmike1999 1 year ago
such lovly little girls...so dedicateed to each other
mylampisbright 2 years ago 2
@mylampisbright thank you
krystalmike1999 1 year ago
img i have cf and i am getting the gtube. im 13 and im getting the tube on the 18th of november. i also take the pills (ultrase mt12) but i can take all of the pills at once...lol. i am a bit nervous and excited about getting this. maybe i will become a catcher on my baseball team if i gain enough wait... WHO KNOWS!!!!!
shouldbestormplaya27 2 years ago
@shouldbestormplaya27 So how's it going? It's been almost a year right? Did you gain enough weight?
krystalmike1999 1 year ago
good, nice nd responsible sister..
vernald24 2 years ago 2
@vernald24 when she wants to be.... ;)
krystalmike1999 1 year ago
What instigated the feeding tube? My daughter, Violet is 4, and just does NOT gain weight, but she doesn't eat. She just never seems to have an appetite. I am so fearful of the feeding tube.. but the doctors don't seem to think she needs one.... yet. So just wondering... Your girls are so awesome. I love the Winter is so involved.
3LittleNinjas 2 years ago
Violet has CF also.
3LittleNinjas 2 years ago
Tori has cystic fibrosis, this disorder does not just enlist many lung problems, it causes digestive problems and people with this disorder do not absorb enough calories needed for gaining weight and maintaining an healthy, appropriate weight.
Alyssahonors 2 years ago
Tori is diagnosed as failure to thrive. She does not eat enough calories during the day to gain weight. She only eats enough to sustain her. So she has her feeding tube to help her gain weight.
krystalmike1999 2 years ago
Why she has to have feeding tube?
claysia30 2 years ago
What a beautiful and unbreakable bond between 2 sisters.
It goes to prove involving the other sibling certainly in some cases really works. May they continue to support each other. x x x
jaysmiler0 2 years ago 2
@jaysmiler0 So far so good. Winter is entering teenage-dom. They are good with each other still
krystalmike1999 1 year ago
are they twins
evewalleghost3 2 years ago
I'm going to call her company and find out about uses a smaller pump. That sounds great. :)
krystalmike1999 2 years ago
I have 2 names for a smaller pump.
- Nutricia Flocare Infinity
- Applix Smart
They both are simple in use and easy to take with you (for exemple if you're on vacation or on a trip)
Louzz1986 2 years ago
@Louzz1986 We got a smallerr pump. Tori loves it.
krystalmike1999 1 year ago
i have a feeding tube. i have cf just like Tori. The pump Tori uses is really old fashioned compared to mine though. Mine doesnt take as long to set up, its a tiny purple pump =]
xxLilmissCoolxx 2 years ago
@xxLilmissCoolxx my feeding pump is called the kangaroo pump its little
celestpwll 1 year ago
@celestpwll
We got a small one finally also... It fit in a small backpack. Tori loves it
krystalmike1999 1 year ago
Comment removed
tigggy123 2 years ago
So many things to say.
I can imagine you are so proud of both of your girls. I am and I don't even know them! LOLOL. It's awesome that Winter knows how to set up the pump and I am equally impressed that Tori is so "okay" about her tube and hooking herself right up.
Good job with the video, it's so important to educate people on these things.
Your girls rock!
patyrish 3 years ago 2
I love the sister love for each other. My grand-daughter is singing to her sister. Let's keep them close.♥♥♥
patmarch281958 3 years ago
Cassi is trying to do better with Collin. IT is a work in progress. I think she is seeing more.
Sandyrhh 3 years ago
WOW that is awesome that Winter does that for Tori. My 2 boy and girl. Fight so much and it tears my heart up. I showed Cassi 10 this video hoping she will understand his illness more and treat him better. She has resentment. They are 4 years apart. I love the closeness of your 2 beautiful girls.
Sandy Mom to Collin wcf
Sandyrhh 3 years ago
Thank you so much for the sweet comment. But please don't be fooled. Winter is not always awesome with herr sister. There are times that they fight... hopefully it won't become a permanent thing.
krystalmike1999 3 years ago
Oh my goodness, your girls are beautiful! They have such a special bond too! That is amazing that Winter knows exactly what is happening to Tori and what she needs. That is very sweet.
momof2inAL 3 years ago
We try to include Winter as much as we can. I hope that their bond will stay strong even thru those dreaded teenage years
krystalmike1999 3 years ago
What a great sis! My son helps his sister with her mickey button too, she is only tube fed. The worse part is if the extension comes open at night (dumb med port!) and feeds her bed instead of her!
I have recently found your vids and didn't realize until now Tori had a mickey too! Winter sure is a great sister. Its nice to see that kind of bond. Very heart warming
Momoftwinsplus1 3 years ago
We hope that Winter and Tori's bond will last thru teenage-land. But so far so good. Winter likes to help and Tori does enjoy her company.
krystalmike1999 3 years ago
I miss being a teen! That's cool!
raecarrie20 3 years ago
It is horrible when the extension tube comes open for whatever reason. We ruined one mattress before we got 'smart' and put on a plastic cover.
krystalmike1999 3 years ago
We now lay ours in emesin basin I swiped from he hospial, if it comes open it will all go in it, our daughter is toally inactive so I don't have to worry about her rolling on it or moving it
Momoftwinsplus1 3 years ago
@Momoftwinsplus1 there is a blog I follow and the mom got a neat calmp thing to eliminate the tape issue. The thing is called a AMT Clamp. I was able to google it and it was the first on the list.
krystalmike1999 1 year ago
wow! I'm a nursing student who came online to see some demonstrations as to how this is done to refresh my memory, but I didn't expect to see this. This is truly a beautiful movie and you have a very special family. Keeps your heads held high and I'll keep you in my prayers.
Karazona140 3 years ago
Thank you. So glad you enjoyed it
krystalmike1999 3 years ago
thankyou, what exactly is that??
And pleae tell tori about all the loe and support she gets from all us online, and let us know of her recovery?? please
Bye X
passion2act 3 years ago
sorry to comment again!
But what exactly does Tori suffer from? Asthma? because i am a asthmatuc, but only on ihalers etc....??
passion2act 3 years ago
Tori has Cystic Fibrosis.
krystalmike1999 3 years ago
wow she is such a good sister
passion2act 3 years ago