SCARED,need to know more about other kids FEV1#s

MaksNana

New member
Thankyou so much Melissa...I'v never thought of wetting down any of her food before...I think you are right about it not being called 'choking', I'm terrible with coming up with the right words..I'm not sure what a raccoon sounds like,,,and I still don't know how exactly to describe what she does.It's been going on for awhile now and at first I would always say (with a slight panic )are you okay?? She will say yea,my food gets stuck in my throat....Now, I'll say 'caimly' is evrything okay,and not all the time do I ask her,,,and she'll give me the same answer,,yea, I'm okay the food just gets stuck in my throat,,and later we need to try to get some of my mucous out...I know this might sound strange, but I'm so impressed that she'll tell me ,we need to work on getting her mucous out...Because she hates doing it....
Of course if some one is around her that doesn't know that she has CF,,well,,even the ones who do,,,they will sometimes jump and panic and ask her ,What was that,are you okay?? She'll say the same thing...
I thought it might be happening to her because of inflammation and how thick her mucous gets....It would help if the doctors would explain some things....I think some times they expect you to know everything..
Thankyou so much Melissa for explaining things so well..I'll start having her drink more when she eats and see if it helps some...
She's at the age where she's starting to realize, hey,how come no one elese is having to do treatments and go to the doctors all the time and they don't gag on their food when they eat???Sometimes I don't know what to say,,,and I LIED to her and told her ,,oh I used to do that all the time when I would eat and it gets better....Oh my God,,I'm a terrible person !!i'm sorry !!!
 

MaksNana

New member
Thankyou so much Melissa...I'v never thought of wetting down any of her food before...I think you are right about it not being called 'choking', I'm terrible with coming up with the right words..I'm not sure what a raccoon sounds like,,,and I still don't know how exactly to describe what she does.It's been going on for awhile now and at first I would always say (with a slight panic )are you okay?? She will say yea,my food gets stuck in my throat....Now, I'll say 'caimly' is evrything okay,and not all the time do I ask her,,,and she'll give me the same answer,,yea, I'm okay the food just gets stuck in my throat,,and later we need to try to get some of my mucous out...I know this might sound strange, but I'm so impressed that she'll tell me ,we need to work on getting her mucous out...Because she hates doing it....
Of course if some one is around her that doesn't know that she has CF,,well,,even the ones who do,,,they will sometimes jump and panic and ask her ,What was that,are you okay?? She'll say the same thing...
I thought it might be happening to her because of inflammation and how thick her mucous gets....It would help if the doctors would explain some things....I think some times they expect you to know everything..
Thankyou so much Melissa for explaining things so well..I'll start having her drink more when she eats and see if it helps some...
She's at the age where she's starting to realize, hey,how come no one elese is having to do treatments and go to the doctors all the time and they don't gag on their food when they eat???Sometimes I don't know what to say,,,and I LIED to her and told her ,,oh I used to do that all the time when I would eat and it gets better....Oh my God,,I'm a terrible person !!i'm sorry !!!
 

MaksNana

New member
Thankyou so much Melissa...I'v never thought of wetting down any of her food before...I think you are right about it not being called 'choking', I'm terrible with coming up with the right words..I'm not sure what a raccoon sounds like,,,and I still don't know how exactly to describe what she does.It's been going on for awhile now and at first I would always say (with a slight panic )are you okay?? She will say yea,my food gets stuck in my throat....Now, I'll say 'caimly' is evrything okay,and not all the time do I ask her,,,and she'll give me the same answer,,yea, I'm okay the food just gets stuck in my throat,,and later we need to try to get some of my mucous out...I know this might sound strange, but I'm so impressed that she'll tell me ,we need to work on getting her mucous out...Because she hates doing it....
Of course if some one is around her that doesn't know that she has CF,,well,,even the ones who do,,,they will sometimes jump and panic and ask her ,What was that,are you okay?? She'll say the same thing...
I thought it might be happening to her because of inflammation and how thick her mucous gets....It would help if the doctors would explain some things....I think some times they expect you to know everything..
Thankyou so much Melissa for explaining things so well..I'll start having her drink more when she eats and see if it helps some...
She's at the age where she's starting to realize, hey,how come no one elese is having to do treatments and go to the doctors all the time and they don't gag on their food when they eat???Sometimes I don't know what to say,,,and I LIED to her and told her ,,oh I used to do that all the time when I would eat and it gets better....Oh my God,,I'm a terrible person !!i'm sorry !!!
 

MaksNana

New member
Thankyou so much Melissa...I'v never thought of wetting down any of her food before...I think you are right about it not being called 'choking', I'm terrible with coming up with the right words..I'm not sure what a raccoon sounds like,,,and I still don't know how exactly to describe what she does.It's been going on for awhile now and at first I would always say (with a slight panic )are you okay?? She will say yea,my food gets stuck in my throat....Now, I'll say 'caimly' is evrything okay,and not all the time do I ask her,,,and she'll give me the same answer,,yea, I'm okay the food just gets stuck in my throat,,and later we need to try to get some of my mucous out...I know this might sound strange, but I'm so impressed that she'll tell me ,we need to work on getting her mucous out...Because she hates doing it....
Of course if some one is around her that doesn't know that she has CF,,well,,even the ones who do,,,they will sometimes jump and panic and ask her ,What was that,are you okay?? She'll say the same thing...
I thought it might be happening to her because of inflammation and how thick her mucous gets....It would help if the doctors would explain some things....I think some times they expect you to know everything..
Thankyou so much Melissa for explaining things so well..I'll start having her drink more when she eats and see if it helps some...
She's at the age where she's starting to realize, hey,how come no one elese is having to do treatments and go to the doctors all the time and they don't gag on their food when they eat???Sometimes I don't know what to say,,,and I LIED to her and told her ,,oh I used to do that all the time when I would eat and it gets better....Oh my God,,I'm a terrible person !!i'm sorry !!!
 

MaksNana

New member
Thankyou so much Melissa...I'v never thought of wetting down any of her food before...I think you are right about it not being called 'choking', I'm terrible with coming up with the right words..I'm not sure what a raccoon sounds like,,,and I still don't know how exactly to describe what she does.It's been going on for awhile now and at first I would always say (with a slight panic )are you okay?? She will say yea,my food gets stuck in my throat....Now, I'll say 'caimly' is evrything okay,and not all the time do I ask her,,,and she'll give me the same answer,,yea, I'm okay the food just gets stuck in my throat,,and later we need to try to get some of my mucous out...I know this might sound strange, but I'm so impressed that she'll tell me ,we need to work on getting her mucous out...Because she hates doing it....
<br />Of course if some one is around her that doesn't know that she has CF,,well,,even the ones who do,,,they will sometimes jump and panic and ask her ,What was that,are you okay?? She'll say the same thing...
<br />I thought it might be happening to her because of inflammation and how thick her mucous gets....It would help if the doctors would explain some things....I think some times they expect you to know everything..
<br />Thankyou so much Melissa for explaining things so well..I'll start having her drink more when she eats and see if it helps some...
<br />She's at the age where she's starting to realize, hey,how come no one elese is having to do treatments and go to the doctors all the time and they don't gag on their food when they eat???Sometimes I don't know what to say,,,and I LIED to her and told her ,,oh I used to do that all the time when I would eat and it gets better....Oh my God,,I'm a terrible person !!i'm sorry !!!
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MaksNana</b></i>

She's at the age where she's starting to realize, hey,how come no one elese is having to do treatments and go to the doctors all the time and they don't gag on their food when they eat???Sometimes I don't know what to say,,,and I LIED to her and told her ,,oh I used to do that all the time when I would eat and it gets better....Oh my God,,I'm a terrible person !!i'm sorry !!!</end quote></div>


I dont know if you ever saw Forrest Gump, but in one scene when he had braces on his legs & the kids were making fun of him. His Mamma told him, dont think nothing of it Forrest, if God wanted everyone to be the same.....he would have put braces on everyones legs (that isnt the exact words, but you get the idea) & I love this idea for the little ones with CF LOL!
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MaksNana</b></i>

She's at the age where she's starting to realize, hey,how come no one elese is having to do treatments and go to the doctors all the time and they don't gag on their food when they eat???Sometimes I don't know what to say,,,and I LIED to her and told her ,,oh I used to do that all the time when I would eat and it gets better....Oh my God,,I'm a terrible person !!i'm sorry !!!</end quote></div>


I dont know if you ever saw Forrest Gump, but in one scene when he had braces on his legs & the kids were making fun of him. His Mamma told him, dont think nothing of it Forrest, if God wanted everyone to be the same.....he would have put braces on everyones legs (that isnt the exact words, but you get the idea) & I love this idea for the little ones with CF LOL!
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MaksNana</b></i>

She's at the age where she's starting to realize, hey,how come no one elese is having to do treatments and go to the doctors all the time and they don't gag on their food when they eat???Sometimes I don't know what to say,,,and I LIED to her and told her ,,oh I used to do that all the time when I would eat and it gets better....Oh my God,,I'm a terrible person !!i'm sorry !!!</end quote></div>


I dont know if you ever saw Forrest Gump, but in one scene when he had braces on his legs & the kids were making fun of him. His Mamma told him, dont think nothing of it Forrest, if God wanted everyone to be the same.....he would have put braces on everyones legs (that isnt the exact words, but you get the idea) & I love this idea for the little ones with CF LOL!
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MaksNana</b></i>

She's at the age where she's starting to realize, hey,how come no one elese is having to do treatments and go to the doctors all the time and they don't gag on their food when they eat???Sometimes I don't know what to say,,,and I LIED to her and told her ,,oh I used to do that all the time when I would eat and it gets better....Oh my God,,I'm a terrible person !!i'm sorry !!!</end quote>


I dont know if you ever saw Forrest Gump, but in one scene when he had braces on his legs & the kids were making fun of him. His Mamma told him, dont think nothing of it Forrest, if God wanted everyone to be the same.....he would have put braces on everyones legs (that isnt the exact words, but you get the idea) & I love this idea for the little ones with CF LOL!
 

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MaksNana</b></i>
<br />
<br />She's at the age where she's starting to realize, hey,how come no one elese is having to do treatments and go to the doctors all the time and they don't gag on their food when they eat???Sometimes I don't know what to say,,,and I LIED to her and told her ,,oh I used to do that all the time when I would eat and it gets better....Oh my God,,I'm a terrible person !!i'm sorry !!!</end quote>
<br />
<br />
<br />I dont know if you ever saw Forrest Gump, but in one scene when he had braces on his legs & the kids were making fun of him. His Mamma told him, dont think nothing of it Forrest, if God wanted everyone to be the same.....he would have put braces on everyones legs (that isnt the exact words, but you get the idea) & I love this idea for the little ones with CF LOL!
<br />
 

MaksNana

New member
Thankyou again Mellisa,
That's such a good idea....I do want you to know,,,,I know this is not about ME,,,it's about all of you with CF!!
I know I have alot of learning on the RIGHT things to say and not to say. I feel this is such a good reason for opening up about things to others...For all these pass years ,,it's been like a hush up ,,type thing,,with my family..I got one of those great family's (just kidding) that as long as you don't talk about it,,then it really isn't happening,,,their a bunch of idiots....
Only one daughter has even a little bit of an idea on what Makailyn goes through everyday of her life !!!! I guess you can tell I HATE THIS DISEASE !!!!!!!!!!!!
Thanks for your possitive words of wisdom
Karla
 

MaksNana

New member
Thankyou again Mellisa,
That's such a good idea....I do want you to know,,,,I know this is not about ME,,,it's about all of you with CF!!
I know I have alot of learning on the RIGHT things to say and not to say. I feel this is such a good reason for opening up about things to others...For all these pass years ,,it's been like a hush up ,,type thing,,with my family..I got one of those great family's (just kidding) that as long as you don't talk about it,,then it really isn't happening,,,their a bunch of idiots....
Only one daughter has even a little bit of an idea on what Makailyn goes through everyday of her life !!!! I guess you can tell I HATE THIS DISEASE !!!!!!!!!!!!
Thanks for your possitive words of wisdom
Karla
 

MaksNana

New member
Thankyou again Mellisa,
That's such a good idea....I do want you to know,,,,I know this is not about ME,,,it's about all of you with CF!!
I know I have alot of learning on the RIGHT things to say and not to say. I feel this is such a good reason for opening up about things to others...For all these pass years ,,it's been like a hush up ,,type thing,,with my family..I got one of those great family's (just kidding) that as long as you don't talk about it,,then it really isn't happening,,,their a bunch of idiots....
Only one daughter has even a little bit of an idea on what Makailyn goes through everyday of her life !!!! I guess you can tell I HATE THIS DISEASE !!!!!!!!!!!!
Thanks for your possitive words of wisdom
Karla
 

MaksNana

New member
Thankyou again Mellisa,
That's such a good idea....I do want you to know,,,,I know this is not about ME,,,it's about all of you with CF!!
I know I have alot of learning on the RIGHT things to say and not to say. I feel this is such a good reason for opening up about things to others...For all these pass years ,,it's been like a hush up ,,type thing,,with my family..I got one of those great family's (just kidding) that as long as you don't talk about it,,then it really isn't happening,,,their a bunch of idiots....
Only one daughter has even a little bit of an idea on what Makailyn goes through everyday of her life !!!! I guess you can tell I HATE THIS DISEASE !!!!!!!!!!!!
Thanks for your possitive words of wisdom
Karla
 

MaksNana

New member
Thankyou again Mellisa,
<br />That's such a good idea....I do want you to know,,,,I know this is not about ME,,,it's about all of you with CF!!
<br />I know I have alot of learning on the RIGHT things to say and not to say. I feel this is such a good reason for opening up about things to others...For all these pass years ,,it's been like a hush up ,,type thing,,with my family..I got one of those great family's (just kidding) that as long as you don't talk about it,,then it really isn't happening,,,their a bunch of idiots....
<br />Only one daughter has even a little bit of an idea on what Makailyn goes through everyday of her life !!!! I guess you can tell I HATE THIS DISEASE !!!!!!!!!!!!
<br />Thanks for your possitive words of wisdom
<br />Karla
 

MaksNana

New member
Dear Renee,
I am looking forward to reading your post and the update that was done in Feb..I will FU with you as soon as I can...Many prayers coming your way ,,,I can't believe you have 5 kids and 2 w/CF..You have your hands full.Thankyou for taking time to help us...God Bless you,,,,Karla
 

MaksNana

New member
Dear Renee,
I am looking forward to reading your post and the update that was done in Feb..I will FU with you as soon as I can...Many prayers coming your way ,,,I can't believe you have 5 kids and 2 w/CF..You have your hands full.Thankyou for taking time to help us...God Bless you,,,,Karla
 

MaksNana

New member
Dear Renee,
I am looking forward to reading your post and the update that was done in Feb..I will FU with you as soon as I can...Many prayers coming your way ,,,I can't believe you have 5 kids and 2 w/CF..You have your hands full.Thankyou for taking time to help us...God Bless you,,,,Karla
 

MaksNana

New member
Dear Renee,
I am looking forward to reading your post and the update that was done in Feb..I will FU with you as soon as I can...Many prayers coming your way ,,,I can't believe you have 5 kids and 2 w/CF..You have your hands full.Thankyou for taking time to help us...God Bless you,,,,Karla
 

MaksNana

New member
Dear Renee,
<br />I am looking forward to reading your post and the update that was done in Feb..I will FU with you as soon as I can...Many prayers coming your way ,,,I can't believe you have 5 kids and 2 w/CF..You have your hands full.Thankyou for taking time to help us...God Bless you,,,,Karla
 
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