Another morbid question...

[Ratatosk]

I think too as parents, especially those with newly diagnosed children, that we're looking for reasons as why some people wcf have a worse time than others. We're scared, we want answers. I know I was -- I was scouring the internet for people who had the same mutation as DS to get assurances that he'd lead a long, normal life.

We want to make sure that we're doing every thing we can to keep our children healthy, we're constantly worried that the other shoe will drop -- we want to know WHY some people are doing better than others. And the basic fact of the matter is, there is no reason. It's a complicated disease.

 

[Ratatosk]

I think too as parents, especially those with newly diagnosed children, that we're looking for reasons as why some people wcf have a worse time than others. We're scared, we want answers. I know I was -- I was scouring the internet for people who had the same mutation as DS to get assurances that he'd lead a long, normal life.

We want to make sure that we're doing every thing we can to keep our children healthy, we're constantly worried that the other shoe will drop -- we want to know WHY some people are doing better than others. And the basic fact of the matter is, there is no reason. It's a complicated disease.

 

[Ratatosk]

I think too as parents, especially those with newly diagnosed children, that we're looking for reasons as why some people wcf have a worse time than others. We're scared, we want answers. I know I was -- I was scouring the internet for people who had the same mutation as DS to get assurances that he'd lead a long, normal life.

We want to make sure that we're doing every thing we can to keep our children healthy, we're constantly worried that the other shoe will drop -- we want to know WHY some people are doing better than others. And the basic fact of the matter is, there is no reason. It's a complicated disease.

 

[Ratatosk]

I think too as parents, especially those with newly diagnosed children, that we're looking for reasons as why some people wcf have a worse time than others. We're scared, we want answers. I know I was -- I was scouring the internet for people who had the same mutation as DS to get assurances that he'd lead a long, normal life.

We want to make sure that we're doing every thing we can to keep our children healthy, we're constantly worried that the other shoe will drop -- we want to know WHY some people are doing better than others. And the basic fact of the matter is, there is no reason. It's a complicated disease.

 

[Ratatosk]

I think too as parents, especially those with newly diagnosed children, that we're looking for reasons as why some people wcf have a worse time than others. We're scared, we want answers. I know I was -- I was scouring the internet for people who had the same mutation as DS to get assurances that he'd lead a long, normal life.
<br />
<br />We want to make sure that we're doing every thing we can to keep our children healthy, we're constantly worried that the other shoe will drop -- we want to know WHY some people are doing better than others. And the basic fact of the matter is, there is no reason. It's a complicated disease.

 

[Chilemom]

nobody really knows what makes the difference. In some percent the gen, in other the modifier gens (that nobody knows what and where are them), in other percent the care you take as a parent or as a cfer, and of course a last quarter in Luck.
So, if each one is 25% , we only can do something in the percent that belongs to the care, that you can divided in nutrition, in treatments and prevent them to be in contact with germs.
but, i read an article from the cleveland hospital that said a kid with two years without much complications in this firsts years have better prognosis.
Me as a mom will do all what i can with my 25%, the other 25 of the gen and the modifiers nothing to do, and the last 25 I have a complete army up there of grandpas, aunts and people that pass away helping me.

 

[Chilemom]

nobody really knows what makes the difference. In some percent the gen, in other the modifier gens (that nobody knows what and where are them), in other percent the care you take as a parent or as a cfer, and of course a last quarter in Luck.
So, if each one is 25% , we only can do something in the percent that belongs to the care, that you can divided in nutrition, in treatments and prevent them to be in contact with germs.
but, i read an article from the cleveland hospital that said a kid with two years without much complications in this firsts years have better prognosis.
Me as a mom will do all what i can with my 25%, the other 25 of the gen and the modifiers nothing to do, and the last 25 I have a complete army up there of grandpas, aunts and people that pass away helping me.

 

[Chilemom]

nobody really knows what makes the difference. In some percent the gen, in other the modifier gens (that nobody knows what and where are them), in other percent the care you take as a parent or as a cfer, and of course a last quarter in Luck.
So, if each one is 25% , we only can do something in the percent that belongs to the care, that you can divided in nutrition, in treatments and prevent them to be in contact with germs.
but, i read an article from the cleveland hospital that said a kid with two years without much complications in this firsts years have better prognosis.
Me as a mom will do all what i can with my 25%, the other 25 of the gen and the modifiers nothing to do, and the last 25 I have a complete army up there of grandpas, aunts and people that pass away helping me.

 

[Chilemom]

nobody really knows what makes the difference. In some percent the gen, in other the modifier gens (that nobody knows what and where are them), in other percent the care you take as a parent or as a cfer, and of course a last quarter in Luck.
So, if each one is 25% , we only can do something in the percent that belongs to the care, that you can divided in nutrition, in treatments and prevent them to be in contact with germs.
but, i read an article from the cleveland hospital that said a kid with two years without much complications in this firsts years have better prognosis.
Me as a mom will do all what i can with my 25%, the other 25 of the gen and the modifiers nothing to do, and the last 25 I have a complete army up there of grandpas, aunts and people that pass away helping me.

 

[Chilemom]

nobody really knows what makes the difference. In some percent the gen, in other the modifier gens (that nobody knows what and where are them), in other percent the care you take as a parent or as a cfer, and of course a last quarter in Luck.
<br />So, if each one is 25% , we only can do something in the percent that belongs to the care, that you can divided in nutrition, in treatments and prevent them to be in contact with germs.
<br />but, i read an article from the cleveland hospital that said a kid with two years without much complications in this firsts years have better prognosis.
<br />Me as a mom will do all what i can with my 25%, the other 25 of the gen and the modifiers nothing to do, and the last 25 I have a complete army up there of grandpas, aunts and people that pass away helping me.
<br />
<br />

 

[Aspiemom]

Carrie, that was a very gracious apology. I understand what you mean about some of the parents out there and know you didn't mean on this site (obviously people that take the time to peruse on here are not neglecting their kids). I heard another OB nurse say the same thing you did. Anyway, I thought your apology and explanation were very thoughtful and clear.

I am not a parent of a CFer (I'm an "old" CFer <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">), but I agree that genes are a part of it, age of dx, among other things. I hadn't even thought about medical care until Liza mentioned it, but I'm sure that's very true.

Haley's mom, I've been following Haley's CB site. I'm so sorry for your loss.

 

[Aspiemom]

Carrie, that was a very gracious apology. I understand what you mean about some of the parents out there and know you didn't mean on this site (obviously people that take the time to peruse on here are not neglecting their kids). I heard another OB nurse say the same thing you did. Anyway, I thought your apology and explanation were very thoughtful and clear.

I am not a parent of a CFer (I'm an "old" CFer <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">), but I agree that genes are a part of it, age of dx, among other things. I hadn't even thought about medical care until Liza mentioned it, but I'm sure that's very true.

Haley's mom, I've been following Haley's CB site. I'm so sorry for your loss.

 

[Aspiemom]

Carrie, that was a very gracious apology. I understand what you mean about some of the parents out there and know you didn't mean on this site (obviously people that take the time to peruse on here are not neglecting their kids). I heard another OB nurse say the same thing you did. Anyway, I thought your apology and explanation were very thoughtful and clear.

I am not a parent of a CFer (I'm an "old" CFer <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">), but I agree that genes are a part of it, age of dx, among other things. I hadn't even thought about medical care until Liza mentioned it, but I'm sure that's very true.

Haley's mom, I've been following Haley's CB site. I'm so sorry for your loss.

 

[Aspiemom]

Carrie, that was a very gracious apology. I understand what you mean about some of the parents out there and know you didn't mean on this site (obviously people that take the time to peruse on here are not neglecting their kids). I heard another OB nurse say the same thing you did. Anyway, I thought your apology and explanation were very thoughtful and clear.

I am not a parent of a CFer (I'm an "old" CFer <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">), but I agree that genes are a part of it, age of dx, among other things. I hadn't even thought about medical care until Liza mentioned it, but I'm sure that's very true.

Haley's mom, I've been following Haley's CB site. I'm so sorry for your loss.

 

[Aspiemom]

Carrie, that was a very gracious apology. I understand what you mean about some of the parents out there and know you didn't mean on this site (obviously people that take the time to peruse on here are not neglecting their kids). I heard another OB nurse say the same thing you did. Anyway, I thought your apology and explanation were very thoughtful and clear.
<br />
<br />I am not a parent of a CFer (I'm an "old" CFer <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">), but I agree that genes are a part of it, age of dx, among other things. I hadn't even thought about medical care until Liza mentioned it, but I'm sure that's very true.
<br />
<br />Haley's mom, I've been following Haley's CB site. I'm so sorry for your loss.

 

[kitomd21]

I suppose the other part of my question pertains to what these children actually die from? I didn't want to ask that question initially because it's very difficult for me to think of my daughter (or anyone else's) dying - especially while still a child. I know each CF individual is different and that there isn't a universal CF progression, but is it most likely from a lung infection? Liver failure? My daughter's doctors seem so promising in terms of managing CF and doing routine cultures to keep bacterial colonization at bay...but I guess I just haven't grasped why children are still dying if we've come so far in treating CF...It may be understandably difficult for some of you to answer this question directly, but I had to ask.

 

[kitomd21]

I suppose the other part of my question pertains to what these children actually die from? I didn't want to ask that question initially because it's very difficult for me to think of my daughter (or anyone else's) dying - especially while still a child. I know each CF individual is different and that there isn't a universal CF progression, but is it most likely from a lung infection? Liver failure? My daughter's doctors seem so promising in terms of managing CF and doing routine cultures to keep bacterial colonization at bay...but I guess I just haven't grasped why children are still dying if we've come so far in treating CF...It may be understandably difficult for some of you to answer this question directly, but I had to ask.

 

[kitomd21]

I suppose the other part of my question pertains to what these children actually die from? I didn't want to ask that question initially because it's very difficult for me to think of my daughter (or anyone else's) dying - especially while still a child. I know each CF individual is different and that there isn't a universal CF progression, but is it most likely from a lung infection? Liver failure? My daughter's doctors seem so promising in terms of managing CF and doing routine cultures to keep bacterial colonization at bay...but I guess I just haven't grasped why children are still dying if we've come so far in treating CF...It may be understandably difficult for some of you to answer this question directly, but I had to ask.

 

[kitomd21]

I suppose the other part of my question pertains to what these children actually die from? I didn't want to ask that question initially because it's very difficult for me to think of my daughter (or anyone else's) dying - especially while still a child. I know each CF individual is different and that there isn't a universal CF progression, but is it most likely from a lung infection? Liver failure? My daughter's doctors seem so promising in terms of managing CF and doing routine cultures to keep bacterial colonization at bay...but I guess I just haven't grasped why children are still dying if we've come so far in treating CF...It may be understandably difficult for some of you to answer this question directly, but I had to ask.

 

[kitomd21]

I suppose the other part of my question pertains to what these children actually die from? I didn't want to ask that question initially because it's very difficult for me to think of my daughter (or anyone else's) dying - especially while still a child. I know each CF individual is different and that there isn't a universal CF progression, but is it most likely from a lung infection? Liver failure? My daughter's doctors seem so promising in terms of managing CF and doing routine cultures to keep bacterial colonization at bay...but I guess I just haven't grasped why children are still dying if we've come so far in treating CF...It may be understandably difficult for some of you to answer this question directly, but I had to ask.