Feeling alone

meteoras69 · Sep 18, 2009

Hello,

My son was born on May 21, 2009, and diagnosed at three weeks of age with CF. He is having a great deal of trouble gaining weight and it looks like he might be getting a feeding tube soon. I am so worried about his future and feel so alone right now. If I'm having trouble dealing with this now, how will I make it when/if his illness progresses? Any advice?

meteoras69 · Sep 18, 2009

Hello,

My son was born on May 21, 2009, and diagnosed at three weeks of age with CF. He is having a great deal of trouble gaining weight and it looks like he might be getting a feeding tube soon. I am so worried about his future and feel so alone right now. If I'm having trouble dealing with this now, how will I make it when/if his illness progresses? Any advice?

meteoras69 · Sep 18, 2009

Hello,

My son was born on May 21, 2009, and diagnosed at three weeks of age with CF. He is having a great deal of trouble gaining weight and it looks like he might be getting a feeding tube soon. I am so worried about his future and feel so alone right now. If I'm having trouble dealing with this now, how will I make it when/if his illness progresses? Any advice?

meteoras69 · Sep 18, 2009

Hello,

My son was born on May 21, 2009, and diagnosed at three weeks of age with CF. He is having a great deal of trouble gaining weight and it looks like he might be getting a feeding tube soon. I am so worried about his future and feel so alone right now. If I'm having trouble dealing with this now, how will I make it when/if his illness progresses? Any advice?

meteoras69 · Sep 18, 2009

Hello,
<br />
<br />My son was born on May 21, 2009, and diagnosed at three weeks of age with CF. He is having a great deal of trouble gaining weight and it looks like he might be getting a feeding tube soon. I am so worried about his future and feel so alone right now. If I'm having trouble dealing with this now, how will I make it when/if his illness progresses? Any advice?

rpcvchina · Sep 18, 2009

We're in the same boat-- diagnosed April 20-- one month before you. Then we found out that our son has it too. Double punch. You may want to look at the responses for the chat "Newly Diagnosed/ Amnio diagnosis....now what happens?" There's some good advice there and may make you feel not so alone. The forum does help a lot I think. The whole thing is still awful, but after seeing other babies in the NICU that were not so "lucky" as us, it helps.

The thing I feel the most grateful for in this whole issue is that their personalities and intelligence are not affected at all. Some genetic problems result in a deterioration of the person's brain. In others the child is never out of diapers their whole life. Don't get me wrong, it's not something I want, but as far as the genetic roll of the dice goes-- there are worse. Our children will always be who they are their whole lives. They can get jobs, go to school, live on their own, play sports, and get married and have families if they want to. The treatments are a big bummer and they are a pain, the time in the hospital is dreaded, but they will have quality of life.

A friend told me that she realized after she had some major disapointments in life that, "I have to accept what has happened in my life. Then decide to have a good life." I think that view point is pretty helpful.

Denise mother of Simon and Savannah DD508

rpcvchina · Sep 18, 2009

We're in the same boat-- diagnosed April 20-- one month before you. Then we found out that our son has it too. Double punch. You may want to look at the responses for the chat "Newly Diagnosed/ Amnio diagnosis....now what happens?" There's some good advice there and may make you feel not so alone. The forum does help a lot I think. The whole thing is still awful, but after seeing other babies in the NICU that were not so "lucky" as us, it helps.

The thing I feel the most grateful for in this whole issue is that their personalities and intelligence are not affected at all. Some genetic problems result in a deterioration of the person's brain. In others the child is never out of diapers their whole life. Don't get me wrong, it's not something I want, but as far as the genetic roll of the dice goes-- there are worse. Our children will always be who they are their whole lives. They can get jobs, go to school, live on their own, play sports, and get married and have families if they want to. The treatments are a big bummer and they are a pain, the time in the hospital is dreaded, but they will have quality of life.

A friend told me that she realized after she had some major disapointments in life that, "I have to accept what has happened in my life. Then decide to have a good life." I think that view point is pretty helpful.

Denise mother of Simon and Savannah DD508

rpcvchina · Sep 18, 2009

We're in the same boat-- diagnosed April 20-- one month before you. Then we found out that our son has it too. Double punch. You may want to look at the responses for the chat "Newly Diagnosed/ Amnio diagnosis....now what happens?" There's some good advice there and may make you feel not so alone. The forum does help a lot I think. The whole thing is still awful, but after seeing other babies in the NICU that were not so "lucky" as us, it helps.

The thing I feel the most grateful for in this whole issue is that their personalities and intelligence are not affected at all. Some genetic problems result in a deterioration of the person's brain. In others the child is never out of diapers their whole life. Don't get me wrong, it's not something I want, but as far as the genetic roll of the dice goes-- there are worse. Our children will always be who they are their whole lives. They can get jobs, go to school, live on their own, play sports, and get married and have families if they want to. The treatments are a big bummer and they are a pain, the time in the hospital is dreaded, but they will have quality of life.

A friend told me that she realized after she had some major disapointments in life that, "I have to accept what has happened in my life. Then decide to have a good life." I think that view point is pretty helpful.

Denise mother of Simon and Savannah DD508

rpcvchina · Sep 18, 2009

We're in the same boat-- diagnosed April 20-- one month before you. Then we found out that our son has it too. Double punch. You may want to look at the responses for the chat "Newly Diagnosed/ Amnio diagnosis....now what happens?" There's some good advice there and may make you feel not so alone. The forum does help a lot I think. The whole thing is still awful, but after seeing other babies in the NICU that were not so "lucky" as us, it helps.

The thing I feel the most grateful for in this whole issue is that their personalities and intelligence are not affected at all. Some genetic problems result in a deterioration of the person's brain. In others the child is never out of diapers their whole life. Don't get me wrong, it's not something I want, but as far as the genetic roll of the dice goes-- there are worse. Our children will always be who they are their whole lives. They can get jobs, go to school, live on their own, play sports, and get married and have families if they want to. The treatments are a big bummer and they are a pain, the time in the hospital is dreaded, but they will have quality of life.

A friend told me that she realized after she had some major disapointments in life that, "I have to accept what has happened in my life. Then decide to have a good life." I think that view point is pretty helpful.

Denise mother of Simon and Savannah DD508

rpcvchina · Sep 18, 2009

We're in the same boat-- diagnosed April 20-- one month before you. Then we found out that our son has it too. Double punch. You may want to look at the responses for the chat "Newly Diagnosed/ Amnio diagnosis....now what happens?" There's some good advice there and may make you feel not so alone. The forum does help a lot I think. The whole thing is still awful, but after seeing other babies in the NICU that were not so "lucky" as us, it helps.
<br />
<br />The thing I feel the most grateful for in this whole issue is that their personalities and intelligence are not affected at all. Some genetic problems result in a deterioration of the person's brain. In others the child is never out of diapers their whole life. Don't get me wrong, it's not something I want, but as far as the genetic roll of the dice goes-- there are worse. Our children will always be who they are their whole lives. They can get jobs, go to school, live on their own, play sports, and get married and have families if they want to. The treatments are a big bummer and they are a pain, the time in the hospital is dreaded, but they will have quality of life.
<br />
<br />A friend told me that she realized after she had some major disapointments in life that, "I have to accept what has happened in my life. Then decide to have a good life." I think that view point is pretty helpful.
<br />
<br />Denise mother of Simon and Savannah DD508

Buckeye · Sep 18, 2009

I am so sorry for what you are going through right now. I think for most people the first year after the diagnosis is the hardest to deal with and then things tend to get a little better when you get used to the routine.Feel free to vent on here and ask as many questions as you want.

Denise:

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

The thing I feel the most grateful for in this whole issue is that their personalities and intelligence are not affected at all. Some genetic problems result in a deterioration of the person's brain. In others the child is never out of diapers their whole life. Don't get me wrong, it's not something I want, but as far as the genetic roll of the dice goes-- there are worse. Our children will always be who they are their whole lives. They can get jobs, go to school, live on their own, play sports, and get married and have families if they want to. The treatments are a big bummer and they are a pain, the time in the hospital is dreaded, but they will have quality of life.

Denise mother of Simon and Savannah DD508</end quote></div>

This whole statement rubs me the wrong way.There are people on this board, both Moms of CFers and CFers themselves, that have children with these other disabilities that you refer to (mental and physical). It's definitely not the first time someone on this board has said something to this effect, but it is so ridiculously offensive to me to know that you are happy that your child is not like my son.My son was born the way he is through no fault of his own and I love him no matter what. I am sure if your child was born with a "visable" defect you would love them the same way even if you don't appreciate their "quality of life".

Buckeye · Sep 18, 2009

I am so sorry for what you are going through right now. I think for most people the first year after the diagnosis is the hardest to deal with and then things tend to get a little better when you get used to the routine.Feel free to vent on here and ask as many questions as you want.

Denise:

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

The thing I feel the most grateful for in this whole issue is that their personalities and intelligence are not affected at all. Some genetic problems result in a deterioration of the person's brain. In others the child is never out of diapers their whole life. Don't get me wrong, it's not something I want, but as far as the genetic roll of the dice goes-- there are worse. Our children will always be who they are their whole lives. They can get jobs, go to school, live on their own, play sports, and get married and have families if they want to. The treatments are a big bummer and they are a pain, the time in the hospital is dreaded, but they will have quality of life.

Denise mother of Simon and Savannah DD508</end quote></div>

This whole statement rubs me the wrong way.There are people on this board, both Moms of CFers and CFers themselves, that have children with these other disabilities that you refer to (mental and physical). It's definitely not the first time someone on this board has said something to this effect, but it is so ridiculously offensive to me to know that you are happy that your child is not like my son.My son was born the way he is through no fault of his own and I love him no matter what. I am sure if your child was born with a "visable" defect you would love them the same way even if you don't appreciate their "quality of life".

Buckeye · Sep 18, 2009

I am so sorry for what you are going through right now. I think for most people the first year after the diagnosis is the hardest to deal with and then things tend to get a little better when you get used to the routine.Feel free to vent on here and ask as many questions as you want.

Denise:

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

The thing I feel the most grateful for in this whole issue is that their personalities and intelligence are not affected at all. Some genetic problems result in a deterioration of the person's brain. In others the child is never out of diapers their whole life. Don't get me wrong, it's not something I want, but as far as the genetic roll of the dice goes-- there are worse. Our children will always be who they are their whole lives. They can get jobs, go to school, live on their own, play sports, and get married and have families if they want to. The treatments are a big bummer and they are a pain, the time in the hospital is dreaded, but they will have quality of life.

Denise mother of Simon and Savannah DD508</end quote></div>

This whole statement rubs me the wrong way.There are people on this board, both Moms of CFers and CFers themselves, that have children with these other disabilities that you refer to (mental and physical). It's definitely not the first time someone on this board has said something to this effect, but it is so ridiculously offensive to me to know that you are happy that your child is not like my son.My son was born the way he is through no fault of his own and I love him no matter what. I am sure if your child was born with a "visable" defect you would love them the same way even if you don't appreciate their "quality of life".

Buckeye · Sep 18, 2009

I am so sorry for what you are going through right now. I think for most people the first year after the diagnosis is the hardest to deal with and then things tend to get a little better when you get used to the routine.Feel free to vent on here and ask as many questions as you want.

Denise:

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

The thing I feel the most grateful for in this whole issue is that their personalities and intelligence are not affected at all. Some genetic problems result in a deterioration of the person's brain. In others the child is never out of diapers their whole life. Don't get me wrong, it's not something I want, but as far as the genetic roll of the dice goes-- there are worse. Our children will always be who they are their whole lives. They can get jobs, go to school, live on their own, play sports, and get married and have families if they want to. The treatments are a big bummer and they are a pain, the time in the hospital is dreaded, but they will have quality of life.

Denise mother of Simon and Savannah DD508</end quote>

This whole statement rubs me the wrong way.There are people on this board, both Moms of CFers and CFers themselves, that have children with these other disabilities that you refer to (mental and physical). It's definitely not the first time someone on this board has said something to this effect, but it is so ridiculously offensive to me to know that you are happy that your child is not like my son.My son was born the way he is through no fault of his own and I love him no matter what. I am sure if your child was born with a "visable" defect you would love them the same way even if you don't appreciate their "quality of life".

Buckeye · Sep 18, 2009

I am so sorry for what you are going through right now. I think for most people the first year after the diagnosis is the hardest to deal with and then things tend to get a little better when you get used to the routine.<p>Feel free to vent on here and ask as many questions as you want.<p>

Denise:<p>

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

The thing I feel the most grateful for in this whole issue is that their personalities and intelligence are not affected at all. Some genetic problems result in a deterioration of the person's brain. In others the child is never out of diapers their whole life. Don't get me wrong, it's not something I want, but as far as the genetic roll of the dice goes-- there are worse. Our children will always be who they are their whole lives. They can get jobs, go to school, live on their own, play sports, and get married and have families if they want to. The treatments are a big bummer and they are a pain, the time in the hospital is dreaded, but they will have quality of life.

Denise mother of Simon and Savannah DD508</end quote><p>

This whole statement rubs me the wrong way.<p>There are people on this board, both Moms of CFers and CFers themselves, that have children with these other disabilities that you refer to (mental and physical). It's definitely not the first time someone on this board has said something to this effect, but it is so ridiculously offensive to me to know that you are happy that your child is not like my son.<p>My son was born the way he is through no fault of his own and I love him no matter what. I am sure if your child was born with a "visable" defect you would love them the same way even if you don't appreciate their "quality of life".<p>

Tammy15 · Sep 18, 2009

My son was diagnosed 4 days old which was a complete surprise. My daughter we knew right away after birth because of having the first. The best advice I got from a doctor and another CF mom was take one day at a time. You will go forwards and backwards in heath issues. Don't treat child as sickly and let them bloom into who they will be. We had many ups and downs with my son, in those down times we always found something to delight in, he managed to be a good trickster, tricking nurses. He learned at a young age how to take out his IV flush medicine down wall as well as when he went to school how to fool school nurse into having her call me casue he was sick, so we learned his personality was a trickster and socail butterfly, he skis he snowboards plays tennis and is 28. My daughter is 24 her beginning easy not much hospital stays, she was into basketball . She has a 4 year old son while her health is not the best now and she is on oxygen she still goes out mall, socceer games with hr son etc. I won't say it will be easy there is good,really good, bad and really bad days, but one thing I have seen from this forum and clinic visits we all have more strength then we know

Tammy15 · Sep 18, 2009

My son was diagnosed 4 days old which was a complete surprise. My daughter we knew right away after birth because of having the first. The best advice I got from a doctor and another CF mom was take one day at a time. You will go forwards and backwards in heath issues. Don't treat child as sickly and let them bloom into who they will be. We had many ups and downs with my son, in those down times we always found something to delight in, he managed to be a good trickster, tricking nurses. He learned at a young age how to take out his IV flush medicine down wall as well as when he went to school how to fool school nurse into having her call me casue he was sick, so we learned his personality was a trickster and socail butterfly, he skis he snowboards plays tennis and is 28. My daughter is 24 her beginning easy not much hospital stays, she was into basketball . She has a 4 year old son while her health is not the best now and she is on oxygen she still goes out mall, socceer games with hr son etc. I won't say it will be easy there is good,really good, bad and really bad days, but one thing I have seen from this forum and clinic visits we all have more strength then we know

Tammy15 · Sep 18, 2009

My son was diagnosed 4 days old which was a complete surprise. My daughter we knew right away after birth because of having the first. The best advice I got from a doctor and another CF mom was take one day at a time. You will go forwards and backwards in heath issues. Don't treat child as sickly and let them bloom into who they will be. We had many ups and downs with my son, in those down times we always found something to delight in, he managed to be a good trickster, tricking nurses. He learned at a young age how to take out his IV flush medicine down wall as well as when he went to school how to fool school nurse into having her call me casue he was sick, so we learned his personality was a trickster and socail butterfly, he skis he snowboards plays tennis and is 28. My daughter is 24 her beginning easy not much hospital stays, she was into basketball . She has a 4 year old son while her health is not the best now and she is on oxygen she still goes out mall, socceer games with hr son etc. I won't say it will be easy there is good,really good, bad and really bad days, but one thing I have seen from this forum and clinic visits we all have more strength then we know

Tammy15 · Sep 18, 2009

My son was diagnosed 4 days old which was a complete surprise. My daughter we knew right away after birth because of having the first. The best advice I got from a doctor and another CF mom was take one day at a time. You will go forwards and backwards in heath issues. Don't treat child as sickly and let them bloom into who they will be. We had many ups and downs with my son, in those down times we always found something to delight in, he managed to be a good trickster, tricking nurses. He learned at a young age how to take out his IV flush medicine down wall as well as when he went to school how to fool school nurse into having her call me casue he was sick, so we learned his personality was a trickster and socail butterfly, he skis he snowboards plays tennis and is 28. My daughter is 24 her beginning easy not much hospital stays, she was into basketball . She has a 4 year old son while her health is not the best now and she is on oxygen she still goes out mall, socceer games with hr son etc. I won't say it will be easy there is good,really good, bad and really bad days, but one thing I have seen from this forum and clinic visits we all have more strength then we know

Tammy15 · Sep 18, 2009

My son was diagnosed 4 days old which was a complete surprise. My daughter we knew right away after birth because of having the first. The best advice I got from a doctor and another CF mom was take one day at a time. You will go forwards and backwards in heath issues. Don't treat child as sickly and let them bloom into who they will be. We had many ups and downs with my son, in those down times we always found something to delight in, he managed to be a good trickster, tricking nurses. He learned at a young age how to take out his IV flush medicine down wall as well as when he went to school how to fool school nurse into having her call me casue he was sick, so we learned his personality was a trickster and socail butterfly, he skis he snowboards plays tennis and is 28. My daughter is 24 her beginning easy not much hospital stays, she was into basketball . She has a 4 year old son while her health is not the best now and she is on oxygen she still goes out mall, socceer games with hr son etc. I won't say it will be easy there is good,really good, bad and really bad days, but one thing I have seen from this forum and clinic visits we all have more strength then we know

Feeling alone

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member