Another morbid question...

[TonyaH]

Wow...I'm a little shocked right now.

First of all, welcome, Haley's Mom, and I am so very sorry for your loss. You, and other parents like Leah, Vic, and others on this site who fight every day to keep their children healthy, are proof that this disease does not seek out the uneducated..the uninvolved..the unmotivated. This disease acts differently for all patients. As parents, we have no choice but to take it day by day and deal with situations as they arise. I have been extremely fortunate with my son. He was never on IV antibiotics until last November. We've had a few issues since then, but feel so blessed that his lung function is as high as it is and that he maintains such a normal lifestyle. We know to be thankful for that because we could just as easily be dealing with the major decisions that have been made for Reece and Garran lately. I can't even fathom the stress of trying to make that decision for a young child. I am not so naive as to think that Andrew is doing well because I do his therepy twice every day, run his nebs, take him to the doctor....Things could still be very different. Morbid? No. My plan is: Hope for the best, prepare for the worst. We need to know all possibilities with this disease so we can "prepare" ourselves for what may come, and appreciate all of the good times we have until then.

 

[TonyaH]

Wow...I'm a little shocked right now.

First of all, welcome, Haley's Mom, and I am so very sorry for your loss. You, and other parents like Leah, Vic, and others on this site who fight every day to keep their children healthy, are proof that this disease does not seek out the uneducated..the uninvolved..the unmotivated. This disease acts differently for all patients. As parents, we have no choice but to take it day by day and deal with situations as they arise. I have been extremely fortunate with my son. He was never on IV antibiotics until last November. We've had a few issues since then, but feel so blessed that his lung function is as high as it is and that he maintains such a normal lifestyle. We know to be thankful for that because we could just as easily be dealing with the major decisions that have been made for Reece and Garran lately. I can't even fathom the stress of trying to make that decision for a young child. I am not so naive as to think that Andrew is doing well because I do his therepy twice every day, run his nebs, take him to the doctor....Things could still be very different. Morbid? No. My plan is: Hope for the best, prepare for the worst. We need to know all possibilities with this disease so we can "prepare" ourselves for what may come, and appreciate all of the good times we have until then.

 

[TonyaH]

Wow...I'm a little shocked right now.

First of all, welcome, Haley's Mom, and I am so very sorry for your loss. You, and other parents like Leah, Vic, and others on this site who fight every day to keep their children healthy, are proof that this disease does not seek out the uneducated..the uninvolved..the unmotivated. This disease acts differently for all patients. As parents, we have no choice but to take it day by day and deal with situations as they arise. I have been extremely fortunate with my son. He was never on IV antibiotics until last November. We've had a few issues since then, but feel so blessed that his lung function is as high as it is and that he maintains such a normal lifestyle. We know to be thankful for that because we could just as easily be dealing with the major decisions that have been made for Reece and Garran lately. I can't even fathom the stress of trying to make that decision for a young child. I am not so naive as to think that Andrew is doing well because I do his therepy twice every day, run his nebs, take him to the doctor....Things could still be very different. Morbid? No. My plan is: Hope for the best, prepare for the worst. We need to know all possibilities with this disease so we can "prepare" ourselves for what may come, and appreciate all of the good times we have until then.

 

[TonyaH]

Wow...I'm a little shocked right now.

First of all, welcome, Haley's Mom, and I am so very sorry for your loss. You, and other parents like Leah, Vic, and others on this site who fight every day to keep their children healthy, are proof that this disease does not seek out the uneducated..the uninvolved..the unmotivated. This disease acts differently for all patients. As parents, we have no choice but to take it day by day and deal with situations as they arise. I have been extremely fortunate with my son. He was never on IV antibiotics until last November. We've had a few issues since then, but feel so blessed that his lung function is as high as it is and that he maintains such a normal lifestyle. We know to be thankful for that because we could just as easily be dealing with the major decisions that have been made for Reece and Garran lately. I can't even fathom the stress of trying to make that decision for a young child. I am not so naive as to think that Andrew is doing well because I do his therepy twice every day, run his nebs, take him to the doctor....Things could still be very different. Morbid? No. My plan is: Hope for the best, prepare for the worst. We need to know all possibilities with this disease so we can "prepare" ourselves for what may come, and appreciate all of the good times we have until then.

 

[TonyaH]

Wow...I'm a little shocked right now.
<br />
<br />First of all, welcome, Haley's Mom, and I am so very sorry for your loss. You, and other parents like Leah, Vic, and others on this site who fight every day to keep their children healthy, are proof that this disease does not seek out the uneducated..the uninvolved..the unmotivated. This disease acts differently for all patients. As parents, we have no choice but to take it day by day and deal with situations as they arise. I have been extremely fortunate with my son. He was never on IV antibiotics until last November. We've had a few issues since then, but feel so blessed that his lung function is as high as it is and that he maintains such a normal lifestyle. We know to be thankful for that because we could just as easily be dealing with the major decisions that have been made for Reece and Garran lately. I can't even fathom the stress of trying to make that decision for a young child. I am not so naive as to think that Andrew is doing well because I do his therepy twice every day, run his nebs, take him to the doctor....Things could still be very different. Morbid? No. My plan is: Hope for the best, prepare for the worst. We need to know all possibilities with this disease so we can "prepare" ourselves for what may come, and appreciate all of the good times we have until then.

 

[Ratatosk]

I wonder the same thing myself. Garran has the same genetic mutations as DS and Garran has had such a terrible struggle! Lot of it is "luck". But then there are other factors. Age of diagnosis -- some people are misdiagnosed or not diagnosed and damage occurs early on. Then there are the bugs which they culture.

Then there's an issue of quality of care. Are the doctors proactive or reactive? Our local CF clinic tends to only encourage cpt, etc. if there are symptoms and then stopping once the pneumonia or upper respiratory symptoms disappear. I've had to learn to know ds's cough. His primary cf doctor in the City has a baseline of no cough and I learned early on NOT to take DS to the local CF clinic for a cough. They just tell me that it's "normal, it's what 'they' (cfers) do. They cough" Nope at 2-3 months the kid had bronchitis.

I think of the 3-4 CPT/Vest treatments we do on DS daily. Have done since he was less than a week old. The drugs he's on -- he practically GLOWS! Yet he still cultures things, still has issues -- gets a cough, sinus infection, CXRs show his lungs are affected...

 

[Ratatosk]

I wonder the same thing myself. Garran has the same genetic mutations as DS and Garran has had such a terrible struggle! Lot of it is "luck". But then there are other factors. Age of diagnosis -- some people are misdiagnosed or not diagnosed and damage occurs early on. Then there are the bugs which they culture.

Then there's an issue of quality of care. Are the doctors proactive or reactive? Our local CF clinic tends to only encourage cpt, etc. if there are symptoms and then stopping once the pneumonia or upper respiratory symptoms disappear. I've had to learn to know ds's cough. His primary cf doctor in the City has a baseline of no cough and I learned early on NOT to take DS to the local CF clinic for a cough. They just tell me that it's "normal, it's what 'they' (cfers) do. They cough" Nope at 2-3 months the kid had bronchitis.

I think of the 3-4 CPT/Vest treatments we do on DS daily. Have done since he was less than a week old. The drugs he's on -- he practically GLOWS! Yet he still cultures things, still has issues -- gets a cough, sinus infection, CXRs show his lungs are affected...

 

[Ratatosk]

I wonder the same thing myself. Garran has the same genetic mutations as DS and Garran has had such a terrible struggle! Lot of it is "luck". But then there are other factors. Age of diagnosis -- some people are misdiagnosed or not diagnosed and damage occurs early on. Then there are the bugs which they culture.

Then there's an issue of quality of care. Are the doctors proactive or reactive? Our local CF clinic tends to only encourage cpt, etc. if there are symptoms and then stopping once the pneumonia or upper respiratory symptoms disappear. I've had to learn to know ds's cough. His primary cf doctor in the City has a baseline of no cough and I learned early on NOT to take DS to the local CF clinic for a cough. They just tell me that it's "normal, it's what 'they' (cfers) do. They cough" Nope at 2-3 months the kid had bronchitis.

I think of the 3-4 CPT/Vest treatments we do on DS daily. Have done since he was less than a week old. The drugs he's on -- he practically GLOWS! Yet he still cultures things, still has issues -- gets a cough, sinus infection, CXRs show his lungs are affected...

 

[Ratatosk]

I wonder the same thing myself. Garran has the same genetic mutations as DS and Garran has had such a terrible struggle! Lot of it is "luck". But then there are other factors. Age of diagnosis -- some people are misdiagnosed or not diagnosed and damage occurs early on. Then there are the bugs which they culture.

Then there's an issue of quality of care. Are the doctors proactive or reactive? Our local CF clinic tends to only encourage cpt, etc. if there are symptoms and then stopping once the pneumonia or upper respiratory symptoms disappear. I've had to learn to know ds's cough. His primary cf doctor in the City has a baseline of no cough and I learned early on NOT to take DS to the local CF clinic for a cough. They just tell me that it's "normal, it's what 'they' (cfers) do. They cough" Nope at 2-3 months the kid had bronchitis.

I think of the 3-4 CPT/Vest treatments we do on DS daily. Have done since he was less than a week old. The drugs he's on -- he practically GLOWS! Yet he still cultures things, still has issues -- gets a cough, sinus infection, CXRs show his lungs are affected...

 

[Ratatosk]

I wonder the same thing myself. Garran has the same genetic mutations as DS and Garran has had such a terrible struggle! Lot of it is "luck". But then there are other factors. Age of diagnosis -- some people are misdiagnosed or not diagnosed and damage occurs early on. Then there are the bugs which they culture.
<br />
<br />Then there's an issue of quality of care. Are the doctors proactive or reactive? Our local CF clinic tends to only encourage cpt, etc. if there are symptoms and then stopping once the pneumonia or upper respiratory symptoms disappear. I've had to learn to know ds's cough. His primary cf doctor in the City has a baseline of no cough and I learned early on NOT to take DS to the local CF clinic for a cough. They just tell me that it's "normal, it's what 'they' (cfers) do. They cough" Nope at 2-3 months the kid had bronchitis.
<br />
<br />I think of the 3-4 CPT/Vest treatments we do on DS daily. Have done since he was less than a week old. The drugs he's on -- he practically GLOWS! Yet he still cultures things, still has issues -- gets a cough, sinus infection, CXRs show his lungs are affected...

 

[purpledoggy]

I think it has to do with luck as well and not so much parenting. My husband was subjected to second hand smoke for 20 years and didn't have any major issues until he was in his 20's.

 

[purpledoggy]

I think it has to do with luck as well and not so much parenting. My husband was subjected to second hand smoke for 20 years and didn't have any major issues until he was in his 20's.

 

[purpledoggy]

I think it has to do with luck as well and not so much parenting. My husband was subjected to second hand smoke for 20 years and didn't have any major issues until he was in his 20's.

 

[purpledoggy]

I think it has to do with luck as well and not so much parenting. My husband was subjected to second hand smoke for 20 years and didn't have any major issues until he was in his 20's.

 

[purpledoggy]

I think it has to do with luck as well and not so much parenting. My husband was subjected to second hand smoke for 20 years and didn't have any major issues until he was in his 20's.

 

[momtoCory]

I have to agree with Katy. My son is 22 years old. He was always fairing healthy and outside of medication and treatments, 1-2 times a years "tune-ups" he was able to just be a kid. He went to school, hung out with friends, and went to summer camp every year. But Cory developed Cepacia when he was 17 years old. Life changed after that. Could I have prevented that? Maybe...I could have not sent him to school, kept him home and away from others to prevent any infection or kept him out of the hospital. But then again, I am use to living guilt ridden (he received his genes from me). Cory was diagnosed at 4 weeks old to mother who was 18 years old and has dedicated her life to his care.
Cory will not tell you that he received the short end of the stick. To him it is about Quality! Quality of life is what we live for. If chosing to raise Cory to that thinking makes me a bad parent, then I chose to accept that without regrets.
So yes, am I offended. I see children who are alot more sick than Cory and I don't beleive their parenting has a thing to do with it.
I also know the other side. I young man whose mother wouldn't even take him to the doctor or even get him his medication and he has never been in the hospital

 

[momtoCory]

I have to agree with Katy. My son is 22 years old. He was always fairing healthy and outside of medication and treatments, 1-2 times a years "tune-ups" he was able to just be a kid. He went to school, hung out with friends, and went to summer camp every year. But Cory developed Cepacia when he was 17 years old. Life changed after that. Could I have prevented that? Maybe...I could have not sent him to school, kept him home and away from others to prevent any infection or kept him out of the hospital. But then again, I am use to living guilt ridden (he received his genes from me). Cory was diagnosed at 4 weeks old to mother who was 18 years old and has dedicated her life to his care.
Cory will not tell you that he received the short end of the stick. To him it is about Quality! Quality of life is what we live for. If chosing to raise Cory to that thinking makes me a bad parent, then I chose to accept that without regrets.
So yes, am I offended. I see children who are alot more sick than Cory and I don't beleive their parenting has a thing to do with it.
I also know the other side. I young man whose mother wouldn't even take him to the doctor or even get him his medication and he has never been in the hospital

 

[momtoCory]

I have to agree with Katy. My son is 22 years old. He was always fairing healthy and outside of medication and treatments, 1-2 times a years "tune-ups" he was able to just be a kid. He went to school, hung out with friends, and went to summer camp every year. But Cory developed Cepacia when he was 17 years old. Life changed after that. Could I have prevented that? Maybe...I could have not sent him to school, kept him home and away from others to prevent any infection or kept him out of the hospital. But then again, I am use to living guilt ridden (he received his genes from me). Cory was diagnosed at 4 weeks old to mother who was 18 years old and has dedicated her life to his care.
Cory will not tell you that he received the short end of the stick. To him it is about Quality! Quality of life is what we live for. If chosing to raise Cory to that thinking makes me a bad parent, then I chose to accept that without regrets.
So yes, am I offended. I see children who are alot more sick than Cory and I don't beleive their parenting has a thing to do with it.
I also know the other side. I young man whose mother wouldn't even take him to the doctor or even get him his medication and he has never been in the hospital

 

[momtoCory]

I have to agree with Katy. My son is 22 years old. He was always fairing healthy and outside of medication and treatments, 1-2 times a years "tune-ups" he was able to just be a kid. He went to school, hung out with friends, and went to summer camp every year. But Cory developed Cepacia when he was 17 years old. Life changed after that. Could I have prevented that? Maybe...I could have not sent him to school, kept him home and away from others to prevent any infection or kept him out of the hospital. But then again, I am use to living guilt ridden (he received his genes from me). Cory was diagnosed at 4 weeks old to mother who was 18 years old and has dedicated her life to his care.
Cory will not tell you that he received the short end of the stick. To him it is about Quality! Quality of life is what we live for. If chosing to raise Cory to that thinking makes me a bad parent, then I chose to accept that without regrets.
So yes, am I offended. I see children who are alot more sick than Cory and I don't beleive their parenting has a thing to do with it.
I also know the other side. I young man whose mother wouldn't even take him to the doctor or even get him his medication and he has never been in the hospital

 

[momtoCory]

I have to agree with Katy. My son is 22 years old. He was always fairing healthy and outside of medication and treatments, 1-2 times a years "tune-ups" he was able to just be a kid. He went to school, hung out with friends, and went to summer camp every year. But Cory developed Cepacia when he was 17 years old. Life changed after that. Could I have prevented that? Maybe...I could have not sent him to school, kept him home and away from others to prevent any infection or kept him out of the hospital. But then again, I am use to living guilt ridden (he received his genes from me). Cory was diagnosed at 4 weeks old to mother who was 18 years old and has dedicated her life to his care.
<br />Cory will not tell you that he received the short end of the stick. To him it is about Quality! Quality of life is what we live for. If chosing to raise Cory to that thinking makes me a bad parent, then I chose to accept that without regrets.
<br />So yes, am I offended. I see children who are alot more sick than Cory and I don't beleive their parenting has a thing to do with it.
<br />I also know the other side. I young man whose mother wouldn't even take him to the doctor or even get him his medication and he has never been in the hospital