whitney frost tiktok

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Side by Side Comparison of INAD regression

hi we're the frost family i'm whitney my,husband jason and i have three children,our oldest is natalie she's 15.,our middle child is riley she is six,and our youngest is our son harrison and,he just turned five when they were born,there were no complications we didn't,know that anything was wrong,but riley and harrison have both been,diagnosed with,a rare terminal disease called infantile,neural axonal dystrophy,that has robbed them of all the,abilities they used to have they no,longer walk,talk or even eat on their own so i'm,going to show you how we got to this,point,riley was born in october of 2013 and,harrison was born,in july of 2015. they're not twins but i,made a comparison,with riley always on the left and,harrison always on the right,this slide right here shows 11 months it,doesn't mean that they were 11 months,the same time,but it just tells you that this picture,was taken when riley was 11 months,and also when harrison was 11 months old,by 12 months of age they were both,meeting their milestones,and seem to be progressing normally but,harrison was diagnosed at 11 months with,inad,so we already knew what we were dealing,with but we still had hope,because he went farther than riley did,as far as,developmentally he laughed and sang,and danced and he was able to clap which,are things that riley was unable to do,so even though he wasn't showing,symptoms because of his diagnosis we had,him in physical therapy,a lot sooner because we knew what we,were dealing with,at 19 months,is when riley got her first pair of afos,because she started to supinate which,means,roll her feet inward and try to walk,on the outside of her ankles so we went,to shriners in louisville,and they gave her her first pair of,afos to help with her ankles,however she was still very determined to,stand up,no matter what and so by 20 months,she was still able to pull to stand but,20 months is the last time that harrison,was able to do so,at 21 months harrison got his first pair,of braces,and at 23 months riley got her second,pair,she was able to stand up with assistance,and harrison,by this time was needing to be in a gate,trainer because he was losing,the ability to sit up and,he was losing muscles in his core area,his trunk muscles,riley did stop standing by this time,but as you can see here harrison is,starting to lose his,head control so while riley was able to,sit up,harrison was losing his balance so,at 27 months riley just needed to be in,a bumbo seat to help with stability,while harrison,had already completely lost his ability,to balance himself,and was always falling over riley was,able to sit up on her own,and harrison relied on pillows and,blankets to support him so that he,wouldn't fall over by 30 months,riley was still able to stand with,assistance some of the time,and harrison was starting to completely,lose his balance and his,capabilities by 32 months,riley was still trying so hard to crawl,and harrison was having a hard time just,rolling over,at 33 months that's when riley was,diagnosed,harrison was 11 months and,by 34 months riley was still able to,drink out of a straw,and harrison had lost that ability a,while ago,by 35 months riley was able to still sit,up,and enjoy playing with toys while,harrison was,so floppy and he needed to be supported,completely,riley still had the strength to try and,crawl with the help of equipment,but harrison was unable to hold his head,up,by 38 months old they were both very,similar,in their physical capabilities,riley stopped being able to drink,through a straw,and lost weight very quickly and needed,emergency surgery,to get a g-tube this is also when,harrison received his make-a-wish trip,by 41 months they were both,unable to sit up on their own or support,their own heads,and at three and a half years we,realized harrison was going to need,a g tube also he had an ng tube for a,month and then at 43 months old,he got his g-tube surgery riley was,still able to stand up in a stander but,a harrison,was too floppy for that to be a,realistic expectation,by four years they were both,pretty much the same,although they can eat a little bit by,mouth they are mostly,fed through their g-tube this is how we,have to travel now because they choke,and someone needs to be in the back to,suction them and to save their lives but,they are both such happy kids and we try,to make every day of their life,a good day and make sure that they're,always smiling,we can't bring the kids to the world so,we decided to bring the world to the,kids and try to make sure that they,experience everything they can our lives,are definitely different from,most people's we have a lot on our plate,a lot to deal with,a lot of sad days but we try to make,sure that our kids see,and do as much as possible because we,don't know how much time we have left,with them,so every day is precious,inadd stands for infantile neuroaxonal,dystrophy it's basically alzheimer's and,parkinson's for children,they have muscle spasms and nerve pain,and

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Banned from both TikTok accounts

well it finally happened i am now banned,from my whitney's frosted backup account,as well as my deb frost main account i,created another one uh dub underscore,frost and the number two,but i think i'm,starting to give up on tick tock because,i keep getting banned for no reason and,tomorrow is riley's eighth birthday and,i was gonna go live,but since i'm banned obviously i can't,do that so i will just do,a couple videos,of riley's birthday party on here,instead,uh i'll start vlogging from here and um,see if i can just,maybe grow my youtube a little bit,um i've got 1.3 million followers on,tick tock and only 10 000 followers on,youtube,so let's see if maybe i can bring,more followers over here,uh i'm just,freaking pissed is what i am like it's,ridiculous i'm getting banned for no,reason um,literally,no reason,um for my,dub frost account,i,don't know what happened i didn't get,any notifications like you violated,community standards or anything like,that it just says i'm not allowed to,post and i'm not allowed to comment and,i'm not allowed to go live but nothing's,happened so i don't know about that and,then with my backup account whitney's,frosted,i posted an intro video,of us and it showed the kids in the,hospital,and i think that might be why they took,it down and they took it down for minor,safety i'm like they're in the hospital,they're literally the safest they could,ever be but okay whatever,so i am now banned,from both of those accounts so i started,a third account and it's dub underscore,frost number two and i think that makes,more sense to be a backup account than,whitney frost did but that's just me so,anyway,i'll uh,keep you guys updated what,is it on tick tock or youtube,i'm on youtube,oh,this is the account first,no no this is this is youtube,sender when you frost,dub underscore frost two,is my third backup account on tick tock,one tick tock yeah,natalie,gotta straighten straighten early a,little bit that's okay um,so i will keep you guys updated about,riley's birthday tomorrow,we already have some things up here i'll,show you we've got some bats over here,and this says,killer birthday and if you get i'll show,you get closer,they're bloody knives,no fantastic,so tomorrow should be a pretty great,birthday,um,riley's cake is,even really cool it's got blood dripping,on the sides of it it's really neat,so i hope to see you guys tomorrow i,might even go tick-tock i mean,not tick tock youtube live tomorrow uh,during her party so i love you guys and,i hope to see you all tomorrow

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Sorry it’s been a while 😬

so it's been a really long time since i,posted on,youtube and i'm really sorry about that,we've had,quite a lot of stuff going on so before,i get into,all the other stuff i'll give you an,update on the kids,here's riley she's doing really,really good,i'm sorry pumpkin you okay,she is um,making more sounds she's more alert,and look at her face,now there's no beauty filter or anything,like that um,i don't know how to do that with just my,camera i can do it on tick tock whatever,um so yesterday while her nurse was here,um we were talking about anniversaries,and when each nurse started,well in may it will be a year that,riley's nurse has been with us,so i started looking at pictures to see,what the kids looked like,before each of the nurses started well,i found the picture of what riley,looked like on her nurse's first day,okay,this is what her face looks like,yeah she,yeah so um,i'm very impressed she's gained a lot of,weight,she's gained a lot of height but her,nurse is,paying attention to all of her needs she,doesn't have a little bald spot in the,back of her head anymore,um partly because her nurse has her,moving around all the time but also,because riley isn't doing this anymore,she used to just do this all the time so,she rubbed a bald spot in the back of,her head,um and,she had a really um a really bad spot on,her ear,um actually was your left one,because she that's like the magic spot,is riley laying on her left side,that stops her from throwing up it,allows her to breathe,so when it's just me taking care of both,kids,obviously breathing is really important,well it's important,all the time anyway um so,riley had to be on her side a lot,because she was so mucusy she was,coughing and choking all the time,so she started getting a spot on her ear,well her nurse has,worked with her so much that,during the day she faces the complete,opposite direction,when she first started riley was facing,the other way,she couldn't have her head facing this,way so that's like,a big deal you okay pumpkin i'll show,you her ear,so it's oh wow,so much better but there used to be a,big spot,right there so um,very very impressive stuff as far as,riley,um looking better feeling better acting,better,doing better um because she has an,attentive nurse,and so just for posterity's sake,um in august of 2019,is when harrison's nurse started,so,sorry the dog moose quit,he's trying to take out the tripod,so um harrison,was pretty,small um and he had quite a lot of hair,when his nurse first started um here's a,picture of both of them,in august of 2019,um,he had so much air,so here's a picture of both of them,they look almost the same i mean as far,as like,face structure it's,just the neighbor's dog barkin,oh lord of mercy,anyway this is what harrison looked like,when his nurse started,very thin um,very tired a lot i mean now he did,vocalize quite a bit but um,so he didn't have a g tube yet oh no he,did he did have a g tube,so um wow,i really know my kids right yeah super,impressed by me,i know,so in february of 2019 this is what,harrison looked like,right um and,uh that's pretty insane right that he,was that,he was so skinny and it wasn't because,um that was right before his g-tube,surgery like that picture was taken,right before he got his g-tube,um it,it was a hard decision to make for riley,but it wasn't a hard decision to make,for harrison because,we thought once you get a g-tube you are,just,no different from a plant that you just,water every day you know,and i was very very wrong in that,assumption because,when riley got her g-tube um,she started gaining strength back and,was able to start eating on her own,again,so it's amazing what nutrition,can do for you and so once riley started,getting the nutrition that she needed,she started getting her strength back,and she became the little girl that we,used to know,so when they started discussing the,possibility of harrison needing a g-tube,we went ahead and jumped on it we were,like yes,let's do it because we know how much it,helped,riley so um,that's what the kids looked like before,they had their nurses,um so,now look at this little plump sucker hey,buddy,look at how look at how chunky,look at how chunky he is,hi baby hi,he doesn't have a shirt on because he,peed through his shirt this morning and,i haven't,put him back in another shirt because he,was sleeping,and you know sleeping is more important,than,putting a shirt on so i just let him,just chill,um but he seems to be in a really good,mood this morning,he's in a really good mood,hi baby i'm sorry i didn't mean to,startle you i thought you knew i was,still here,i'm so sorry buddy,heavy sign at me okay that's fine,so um,harrison is,doing okay um,hold on one second let me hold on buddy,oh crap i'm gonna go check his breathing,really quick,all right,so let me i don't know,this tripod is so neat,i don't know if you guys can hear that,sounds like he's snoring um,i'm getting a suction so if you don't,like that sound,of suctioning mucus tur

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Live b/c TikTok banned me

hi,i don't know if i'm actually live but,i've never done this before so,how's everybody doing,i'm gonna just,go cover up the kids,clothes in here,how's everybody doing i don't know if i,can read comments or,comments can,come up or not let's see,top chat,i don't know what that is,how are we all doing,oh awesome okay cool i can't see you,guys hey mikayla hey nikki how are you,all doing,so,i,oh my gosh i'm so glad you guys can see,me okay great it's fantastic so i wanted,to go live on youtube because i'm trying,to build up my youtube following because,i'm going to,stop using tiktok i think,so um,i'm really glad that it shows your real,names instead of like really hard,nicknames,so that's really great,so how is everybody doing,riley's back there,look you guys even get a better picture,like it's better than on tick tock where,you just see like,this you know what i mean so here's,harrison,hi carlin hi lee,tick-tock is ridiculous i'm freaking mad,like it's,oh my god i'm so sorry i keep,i keep kicking him,and dogs don't really get that there's,accidents so he probably thinks like i,just go out of my way to kick him in the,face all the time,poor guy,why am i banned this time i don't know,they didn't say,um but it's pretty i'm pretty sure it's,because i said drugs,pretty sure so i'm uh,the teensy bit upset about that so,whatever,so,um tonight i'm gonna do,tick tock live can just suck it you know,at least here i might be able to read,all the comments yeah there's only 28 of,you guys on here so that makes it a lot,easier for sure,um,i can't believe you got banned but also,tick tock says so many large craters i,have noticed that i have,and it's ridiculous so even though,income is a source of or i mean i'm,sorry tick tock,no i'm not i don't think i'm,i i might just be like pausing myself,and just like,i don't know,i don't think i'm freezing,are we freezing really,what do you think,who do you think pumpkins,hi babies,hi funko,you're not freezing i'm not freezing for,you okay good,so,this is so cool like it's a much better,picture,like you can see my whole messy ass,living room,all the kids you can see the dogs,you guys want to go see my kitchen,okay right,oh sh i keep running over him i think,i'm so sorry buddy i'm so sorry,hi natalie,i am live on youtube,33,i know,so cool,so i didn't know you know,it's not freezing there either,had a long day i need moose and gutter,content all right sure,all right gunner,gunner,wake up buddy hi fellow pups all right,let's sit,good boy,good boy,ah both of them thank you thank you oh,my buddy my good boy,my good boy,my good boy,just precious i love my babies,he's just being cute he's just sitting,there staring at me,my blood,oh and here's natalie it's a way better,picture than on tick tock,it's sideways,but i think it's like,we can actually see the comments,and they can actually see like,everything,i can stand next to you and yeah,this much right we don't have to like be,like this i mean we can be if you want,to i guess,no ever no i don't like that never mind,no i don't want to be like that thank,you,emily get it before the dog,eats it,not good,not good,hello any looking she's back so we have,harrison's nurse still with us,his nurse is still there,it's uh riley's nurse and the night,nurses that are gone so,everyone says hi sweetheart hi,wow,34 people i know,i know i'm kind of a big deal,yeah,this is actually really impressive for,youtube,really why,because like some people stream on,youtube,yeah i think i'm gonna quit tick tock,and just do youtube,like,screw talk,do you want to try twitch what's twitch,it's,most people use it for game but you can,also do it for like just chatting uh,you can like put,bots to like moderate your chat so you,don't have to if you have a large enough,following uh you can partner with people,you can get paid,it's like fancy tick tock fancy tick,tock huh,should i should i do twitch y'all,would anybody follow me to,twitch how many people would call you to,twitch,i don't know what that is so,but everything is so much heavier here,on youtube i agree i can show you,twitches once you get the phone back,okay,no no twitch,just on just on youtube i could do that,i don't know what it is either y'all i,don't know,anyway here i know you guys are here for,kid content so i'm just riley,you're what i'm a child yeah okay,you follow me but you don't know what it,is thank you that's so fantastic,there's a little bear whose thing's,running out,it's time to it's almost time to put,them to bed,youtube's good too okay good,okay so can you guys still see us,even though the comments are popping up,is it just for me,okay no i don't need anything no move,sure,what did you do,there okay there okay wait no it said,chop chat i don't want the live chat i,want the top chat,natalie looks like my sister,fantastic,there we go i think she looks i think,natalie looks like my sister too,i like her eyebrow,i did that,i did that the first time,you've continued to do it,mama eyebrows grow back,did you

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Rolling Riley from Back to Side

so,i'm gonna do a video on how to flip,riley over,we're gonna roll her onto her side there,are a lot of things to take into,consideration,so she's got two pillows under her legs,right now,this one is going to be the one that,goes behind her back so we get it,out of the way this one is the one,that's going to go between her legs so,we kind of,move it to the side now,we make sure that her spine is straight,and get her,we get her pillow this is called a,flathead baby pillow it's got,um an indention right here and it's,supposed to help,flathead babies but i use it,um to keep their ears safe when they're,laying on their side,so this is the pillow we're gonna use,so i go ahead and turn her head,like this and then,since she's already straight i take,her arm and her leg and i just,pull let her finish,stretching and then i lift her head,and i move the blanket out of the way,and i put this,under making sure that her ear goes in,the hole,and then do you see how she's kind of,tilted backwards,i take this blanket i put it underneath,so that way her head is straight,then i make sure that her shirt isn't,tight against her skin,on either of her shoulders,and i check to make sure that there's no,wrinkles,in her shirt underneath her,yeah there's a big one and so pull it,tight that way she's not laying on any,wrinkles,then we put,this between her legs because this is,not comfortable for her,her hips could pop out of socket if,they're not kept,abducted i think that's the word used,but this way her hips are aligned so,this is much safer for her to,lay on her side this way and then this,i just use,to keep her from rolling that way and,then as far as her arm do you see how,her arm keeps going down,and she's got her fingernails digging,into her hand,so we take a folded-up blanket and i,make sure that,i'm not putting the seams near her hand,so i,do this then i wrap her arm around it,and as you see her her fingers want to,curl in so i stretch her fingers out,and then with this part i also kind of,stretch her fingers out,and then i check her hair because,these little tiny baby hairs at the back,of your neck,they hurt if you're pulling on them so,i run my fingers,all the way under her to make sure that,nothing is caught,and,there she is perfectly rolled over,and comfortable and then i just,cover her up,thank you very much for being such a,good subject baby gross,and now she can watch tv

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Toni Braxton - How Could An Angel Break My Heart (Official HD Video)

(tranquil music),♪ I heard he sang a lullaby ♪,♪ I heard he sang it from his heart ♪,♪ When I found out thought I would die ♪,♪ Because that lullaby was mine ♪,♪ I heard he sealed it with a kiss ♪,♪ He gently kissed her cherry lips ♪,♪ I found that so hard to believe ♪,♪ Because his kiss belonged to me ♪,♪ How could an angel break my heart ♪,♪ Why didn't he catch my falling star ♪,♪ I wish I didn't wish so hard ♪,♪ Maybe I wished our love apart ♪,♪ How could an angel break my heart ♪,♪ Oh ♪,♪ Oh ♪,♪ I heard her face was white as rain ♪,♪ Soft as a rose that blooms in May ♪,♪ He keeps her picture in a frame ♪,♪ And when he sleeps he calls her name ♪,♪ I wonder if she makes him smile ♪,♪ The way he used to smile at me ♪,♪ I hope she doesn't make him laugh ♪,♪ Because his laugh belongs to me ♪,♪ How could an angel break my heart ♪,♪ Why didn't he catch my falling star ♪,♪ I wish I didn't wish so hard ♪,♪ Maybe I wish our love apart ♪,♪ How could an angel break my heart ♪,♪ Whoa oh, oh yeah ♪,♪ Oh my soul is dying ♪,♪ It's crying ♪,♪ I'm trying to understand ♪,♪ Please help me ♪,♪ How could an angel break my heart ♪,♪ Why didn't he catch my falling star ♪,♪ I wish I didn't wish so hard, woo ♪,♪ Maybe I wished our love apart ♪,♪ How could an angel break my heart ♪,♪ What ♪,♪ Oooh ♪,(tranquil music ending)

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TikTok Creator's Son Dies After She Shared His Health Battles with 1.7M Followers

a mother of three is devastated to share,that her youngest son has died after a,years-long battle with a genetic,neurodegenerative disease,whitney frost posted a heartbreaking,video to her tiktok account on new,year's day to announce the death of her,son harrison who died that afternoon at,the age of six,harrison suffered from infantile,neuroaxonal dystrophy or in it a disease,which affects motor skills and voluntary,muscle function,life expectancy for children who have in,it is usually 8 to 12 years of age,harrison's older sister riley 8 has also,been diagnosed within,it the video showed photos of harrison,with various members of his family along,with captions explaining that he went,quickly and did not suffer,we are devastated but glad hes no longer,in pain the captions continued,frost's tick tock account has gone viral,due to her frequent updates regarding to,her children's health issues as well as,her vulnerable reaction posts to,comments both positive and negative in,nature,frost who is also mom to eldest child,natalie 17 posted shortly before,harrison's deaths report that he was,doing well after having recently,overcome a urinary tract infection that,caused sepsis,on monday two days after her youngest,child's passing frost again posted to,tic toc to update that riley is not,doing that great with a gastrointestinal,bleed fever and other complications,a gofundme page established to help the,frost family explain that both children,were born after easy pregnancies no,complications and no indication that,anything was wrong,the page description went on to say that,in 2016 riley was diagnosed within it,after losing her ability to walk talk or,crawl because in a dysgenetic harrison,was tested and had just turned one when,we got his diagnosis and he wasn't even,showing symptoms yet it was the worst,day ever finding out that the two,youngest children had in it,as of monday night the crowdfunding page,has raised almost 17 000 of a 50 000,goal

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How Do You Make This Look Easy?

i've had several people,say oh my gosh how do you do this you,make it look so easy,there's nothing easy about this there's,nothing fun about this,i mean well i guess there is some fun,just because,life would be really freaking miserable,if you decided to just be miserable,about,everything uh so i,i don't do anything for myself actually,the only thing that i do do for myself,is um my hair but um,you see i'm i'm in my living room right,now okay,uh over here is my straightener,and my hair dryer and my brush because i,do my hair,out here there's a mirror see,uh so i can do my hair,while being next to the kids,um that's the only thing i do i don't do,makeup i don't even,wax my eyebrows none of that stuff um,a lot of a lot of my life,is in this room there's,there's nursing care that comes in,monday through friday 7-5,um but i still can't really get a job um,i can't really leave the house full-time,just because,the nurses aren't allowed to drive so i,can't,i can't be very far away because just in,case something happens and the kids need,to go to the hospital,i have to i have to drive um,i the other half,of my life is spent in the kitchen um,and not making dinner it's really just,making drugs and and formula,and on food and stuff um for the kids i,i'm on my own on the weekends um,my husband works every other saturday,but right now he's,um he's recovering from abdominal,surgery,so it's going to be a few months before,he can even pick up the kids,so i'm kind of,kind of doing it on my own um he does,stay up with them at night though so i,can get some sleep so at least there's,that,um,it's taken me a couple years to get to,this point where i can actually be like,uh and,another another thing that helps me is,uh i have my own,drug cabinet so there's that,um,so for the special needs moms for,caregivers in general,um i got i got nothing,i don't i guess just a sense of humor,um,lower your standards of hygiene,um i think i like i take a shower for a,couple of days,um,guys there's really this there's nothing,easy about,this you just kind of,make do and when you do stuff over and,over again,every single day is groundhog day i mean,every freaking day is the same i wake up,in the morning it's always monday,i'm going to either sleep a little bit,while the nurses are here and then go to,school,clean the house do laundry um,as soon as the nurses leave at five,i get the drugs ready i get the kids,catheterized give them suppositories um,nebulizers do their medications put them,to bed,spend several hours fighting with them,to find the perfect,uh position so that they can breathe and,actually start going to sleep,um and then on on saturday and sunday i,wake up,and i have to make the meds do the,catheters,nebulizers flip kids like pancakes,because they get bed sores if you leave,them if you leave them in one spot too,long,um,like it's just uh i don't i don't ever,sit down um i mean i sit down sometimes,um usually when the kids are are in bed,um,the kids go from,that bath chair right there um,to their tables um,where they lay on their side they lay on,their back and then,they can also get in the recliner so,it's like,just just playing musical children they,just they go,different spots and then the rest of my,day is spent,um making food uh dealing with,sometimes they get clogged and i'm gonna,have to like run this through,a filter and i have to like,just put it in another bag and it's not,it's not,yeah i have fun sometimes i i make jokes,i dance um most of that stuff,i just do because it's entertaining to,my kids and,they just they just like it and um,i just want them to smile and i want,them to be happy and i want them to,enjoy their lives i don't,um i don't know i guess let me go in,here so i don't say this in front of,them,um,i don't know i think the mindset comes,from,the terminal diagnosis,because it's like white,why should i sit here feel sorry for,myself,when they're trapped in bodies that,don't work when they're,physically and mentally disabled when,they can't eat they can't move,caregiver burnout is real,but when you have no other option you,have to get out of bed every day,that doesn't mean it's easy,you just have to decide that today's,gonna be a good day you just have to,decide,that your kids don't deserve to see you,like this they deserve a smile,they deserve a goofy mom dancing around,they deserve to they deserve to be happy,they deserve to have the best life,possible for however long they are on,this earth,so it kind of pisses me off people are,like oh my god how do you make it look,so easy,because you only see like,a fraction of our lives that's probably,how it looks easy,nobody wants to pull the camera when the,kids are joking,or when there's poop all over the place,or when they exorcist vomit all over and,you have to get a new rug,nobody wants to nobody wants to get the,camera out for that stuff right,so of course it's gonna look easy,so um i just wanted to tell you guys,like,moms of special needs parents caregivers,of o

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