New here and question to cf'ers (or parents of)

NoExcuses

New member
Jessica you'll find that almost every single person on this board gets info here that they don't get from their clinic.

This is why this board is so popular.

It's easy to blame the clinic but it's really up to us to do as much research and collect as much information as possible to keep us healthy.
 

NoExcuses

New member
Jessica you'll find that almost every single person on this board gets info here that they don't get from their clinic.

This is why this board is so popular.

It's easy to blame the clinic but it's really up to us to do as much research and collect as much information as possible to keep us healthy.
 

NoExcuses

New member
Jessica you'll find that almost every single person on this board gets info here that they don't get from their clinic.

This is why this board is so popular.

It's easy to blame the clinic but it's really up to us to do as much research and collect as much information as possible to keep us healthy.
 

NoExcuses

New member
Jessica you'll find that almost every single person on this board gets info here that they don't get from their clinic.

This is why this board is so popular.

It's easy to blame the clinic but it's really up to us to do as much research and collect as much information as possible to keep us healthy.
 

JazzysMom

New member
I understand the issues you have been dealing with (bed rest etc) that have made you lax in her treatments, but if she WAS showing signs or you KNEW she had a certain bacteria she cultured or if she COULDNT run around without her treatments......would you STILL be lax because of your current circumstances? I dont mean to sound harsh. I just want you to realize that life throws many curve balls at us & if we all became lax on our care when those curves came....we would all be in a lot worse shape. Sometimes you cant avoid things, but most times you just have to find a way to work around them. Its way to easy to find reasons to not to things. Having a longer & healthier life is the ONLY reason TO DO things.
 

JazzysMom

New member
I understand the issues you have been dealing with (bed rest etc) that have made you lax in her treatments, but if she WAS showing signs or you KNEW she had a certain bacteria she cultured or if she COULDNT run around without her treatments......would you STILL be lax because of your current circumstances? I dont mean to sound harsh. I just want you to realize that life throws many curve balls at us & if we all became lax on our care when those curves came....we would all be in a lot worse shape. Sometimes you cant avoid things, but most times you just have to find a way to work around them. Its way to easy to find reasons to not to things. Having a longer & healthier life is the ONLY reason TO DO things.
 

JazzysMom

New member
I understand the issues you have been dealing with (bed rest etc) that have made you lax in her treatments, but if she WAS showing signs or you KNEW she had a certain bacteria she cultured or if she COULDNT run around without her treatments......would you STILL be lax because of your current circumstances? I dont mean to sound harsh. I just want you to realize that life throws many curve balls at us & if we all became lax on our care when those curves came....we would all be in a lot worse shape. Sometimes you cant avoid things, but most times you just have to find a way to work around them. Its way to easy to find reasons to not to things. Having a longer & healthier life is the ONLY reason TO DO things.
 

JazzysMom

New member
I understand the issues you have been dealing with (bed rest etc) that have made you lax in her treatments, but if she WAS showing signs or you KNEW she had a certain bacteria she cultured or if she COULDNT run around without her treatments......would you STILL be lax because of your current circumstances? I dont mean to sound harsh. I just want you to realize that life throws many curve balls at us & if we all became lax on our care when those curves came....we would all be in a lot worse shape. Sometimes you cant avoid things, but most times you just have to find a way to work around them. Its way to easy to find reasons to not to things. Having a longer & healthier life is the ONLY reason TO DO things.
 

JazzysMom

New member
I understand the issues you have been dealing with (bed rest etc) that have made you lax in her treatments, but if she WAS showing signs or you KNEW she had a certain bacteria she cultured or if she COULDNT run around without her treatments......would you STILL be lax because of your current circumstances? I dont mean to sound harsh. I just want you to realize that life throws many curve balls at us & if we all became lax on our care when those curves came....we would all be in a lot worse shape. Sometimes you cant avoid things, but most times you just have to find a way to work around them. Its way to easy to find reasons to not to things. Having a longer & healthier life is the ONLY reason TO DO things.
 

JazzysMom

New member
I understand the issues you have been dealing with (bed rest etc) that have made you lax in her treatments, but if she WAS showing signs or you KNEW she had a certain bacteria she cultured or if she COULDNT run around without her treatments......would you STILL be lax because of your current circumstances? I dont mean to sound harsh. I just want you to realize that life throws many curve balls at us & if we all became lax on our care when those curves came....we would all be in a lot worse shape. Sometimes you cant avoid things, but most times you just have to find a way to work around them. Its way to easy to find reasons to not to things. Having a longer & healthier life is the ONLY reason TO DO things.
 

jdprecious

New member
thank you all truly truly for your replies... it is the unknown and durn down right scared off the picc lines and ports, mrsa and such that has me scared straight... that is why i asked what you all thought on the situation... i def do not want my baby to need tune ups and months in the hospitals.... if i can prevent that in any way well i think any parent would...

i have just set up her vest and neb for daily treatments again... need to go down to get new tubing and such for the neb before she uses it tho... i read a thread late last night that said something to the affect that pseudomonias could come from washing it in tap water.... so God knows i have done that numerous times over the years.... so want to start fresh with all neb parts

I am glad I have found this board... i dont want to lose my daughter because i was uninformed... HUGE HUGS TO ALL THAT REPLIED...THANK YOU!!!!

ps. we have our doc appt down at clinic next tuesday, I will certainly follow up with everyone!!
 

jdprecious

New member
thank you all truly truly for your replies... it is the unknown and durn down right scared off the picc lines and ports, mrsa and such that has me scared straight... that is why i asked what you all thought on the situation... i def do not want my baby to need tune ups and months in the hospitals.... if i can prevent that in any way well i think any parent would...

i have just set up her vest and neb for daily treatments again... need to go down to get new tubing and such for the neb before she uses it tho... i read a thread late last night that said something to the affect that pseudomonias could come from washing it in tap water.... so God knows i have done that numerous times over the years.... so want to start fresh with all neb parts

I am glad I have found this board... i dont want to lose my daughter because i was uninformed... HUGE HUGS TO ALL THAT REPLIED...THANK YOU!!!!

ps. we have our doc appt down at clinic next tuesday, I will certainly follow up with everyone!!
 

jdprecious

New member
thank you all truly truly for your replies... it is the unknown and durn down right scared off the picc lines and ports, mrsa and such that has me scared straight... that is why i asked what you all thought on the situation... i def do not want my baby to need tune ups and months in the hospitals.... if i can prevent that in any way well i think any parent would...

i have just set up her vest and neb for daily treatments again... need to go down to get new tubing and such for the neb before she uses it tho... i read a thread late last night that said something to the affect that pseudomonias could come from washing it in tap water.... so God knows i have done that numerous times over the years.... so want to start fresh with all neb parts

I am glad I have found this board... i dont want to lose my daughter because i was uninformed... HUGE HUGS TO ALL THAT REPLIED...THANK YOU!!!!

ps. we have our doc appt down at clinic next tuesday, I will certainly follow up with everyone!!
 

jdprecious

New member
thank you all truly truly for your replies... it is the unknown and durn down right scared off the picc lines and ports, mrsa and such that has me scared straight... that is why i asked what you all thought on the situation... i def do not want my baby to need tune ups and months in the hospitals.... if i can prevent that in any way well i think any parent would...

i have just set up her vest and neb for daily treatments again... need to go down to get new tubing and such for the neb before she uses it tho... i read a thread late last night that said something to the affect that pseudomonias could come from washing it in tap water.... so God knows i have done that numerous times over the years.... so want to start fresh with all neb parts

I am glad I have found this board... i dont want to lose my daughter because i was uninformed... HUGE HUGS TO ALL THAT REPLIED...THANK YOU!!!!

ps. we have our doc appt down at clinic next tuesday, I will certainly follow up with everyone!!
 

jdprecious

New member
thank you all truly truly for your replies... it is the unknown and durn down right scared off the picc lines and ports, mrsa and such that has me scared straight... that is why i asked what you all thought on the situation... i def do not want my baby to need tune ups and months in the hospitals.... if i can prevent that in any way well i think any parent would...

i have just set up her vest and neb for daily treatments again... need to go down to get new tubing and such for the neb before she uses it tho... i read a thread late last night that said something to the affect that pseudomonias could come from washing it in tap water.... so God knows i have done that numerous times over the years.... so want to start fresh with all neb parts

I am glad I have found this board... i dont want to lose my daughter because i was uninformed... HUGE HUGS TO ALL THAT REPLIED...THANK YOU!!!!

ps. we have our doc appt down at clinic next tuesday, I will certainly follow up with everyone!!
 

jdprecious

New member
thank you all truly truly for your replies... it is the unknown and durn down right scared off the picc lines and ports, mrsa and such that has me scared straight... that is why i asked what you all thought on the situation... i def do not want my baby to need tune ups and months in the hospitals.... if i can prevent that in any way well i think any parent would...

i have just set up her vest and neb for daily treatments again... need to go down to get new tubing and such for the neb before she uses it tho... i read a thread late last night that said something to the affect that pseudomonias could come from washing it in tap water.... so God knows i have done that numerous times over the years.... so want to start fresh with all neb parts

I am glad I have found this board... i dont want to lose my daughter because i was uninformed... HUGE HUGS TO ALL THAT REPLIED...THANK YOU!!!!

ps. we have our doc appt down at clinic next tuesday, I will certainly follow up with everyone!!
 

Emily65Roses

New member
I'm just going to echo everyone else, basically. CF care = prevention. After lung damage is done, you can't go back and fix it. So while she's healthy, you want to keep her healthy. And keeping her healthy = doing her meds. Everyone skips sometimes. When I was a kid, we'd take 6 Pulmozymes on vacation, and I'd get one night off, whichever night I chose. But skipping every other day is something I'd advise against.

It's hard to get in the CF swing of things and do all the preventative crap when you're "so healthy!" but that's really when you need to do it. All the adult CFers that are not doing well now, or that have been transplanted, or that have died... have done so because meds and nebs and stuff weren't around when we were kids. I didn't start nebs until I was 9, because that's when Pulmozyme came out. I would've loved to have had Pulmozyme from the time I was a very young child. Jaelyn has the opportunity to have a really good head start. Give it to her. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
I'm just going to echo everyone else, basically. CF care = prevention. After lung damage is done, you can't go back and fix it. So while she's healthy, you want to keep her healthy. And keeping her healthy = doing her meds. Everyone skips sometimes. When I was a kid, we'd take 6 Pulmozymes on vacation, and I'd get one night off, whichever night I chose. But skipping every other day is something I'd advise against.

It's hard to get in the CF swing of things and do all the preventative crap when you're "so healthy!" but that's really when you need to do it. All the adult CFers that are not doing well now, or that have been transplanted, or that have died... have done so because meds and nebs and stuff weren't around when we were kids. I didn't start nebs until I was 9, because that's when Pulmozyme came out. I would've loved to have had Pulmozyme from the time I was a very young child. Jaelyn has the opportunity to have a really good head start. Give it to her. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
I'm just going to echo everyone else, basically. CF care = prevention. After lung damage is done, you can't go back and fix it. So while she's healthy, you want to keep her healthy. And keeping her healthy = doing her meds. Everyone skips sometimes. When I was a kid, we'd take 6 Pulmozymes on vacation, and I'd get one night off, whichever night I chose. But skipping every other day is something I'd advise against.

It's hard to get in the CF swing of things and do all the preventative crap when you're "so healthy!" but that's really when you need to do it. All the adult CFers that are not doing well now, or that have been transplanted, or that have died... have done so because meds and nebs and stuff weren't around when we were kids. I didn't start nebs until I was 9, because that's when Pulmozyme came out. I would've loved to have had Pulmozyme from the time I was a very young child. Jaelyn has the opportunity to have a really good head start. Give it to her. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
I'm just going to echo everyone else, basically. CF care = prevention. After lung damage is done, you can't go back and fix it. So while she's healthy, you want to keep her healthy. And keeping her healthy = doing her meds. Everyone skips sometimes. When I was a kid, we'd take 6 Pulmozymes on vacation, and I'd get one night off, whichever night I chose. But skipping every other day is something I'd advise against.

It's hard to get in the CF swing of things and do all the preventative crap when you're "so healthy!" but that's really when you need to do it. All the adult CFers that are not doing well now, or that have been transplanted, or that have died... have done so because meds and nebs and stuff weren't around when we were kids. I didn't start nebs until I was 9, because that's when Pulmozyme came out. I would've loved to have had Pulmozyme from the time I was a very young child. Jaelyn has the opportunity to have a really good head start. Give it to her. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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