I feel like they have given my daughter a death sentence

shimmereestar · Feb 2, 2008

We just found out the results of our genetic test on our 10 week old on Wednesday. She is postive for CF. We went in for a diaper rash and was told she was failure to thrive. They immediately whisked us to a specialist who admitted us to the hospital. We were there nine days. The sweat test failed and we had to wait on the genetic test. We came home for a week and then were back in the emergency room last Sat. and she was anemic. She had to have two blood transfusions. This Wed. we got the official word. We feel like we have been hit with a ton of bricks. Our doctors have been great but I'm so scared. I feel like I'm going to wake up one morning and find out I've lost her. Is their anyone out there feeling like this. Does my daughter have a chance? Is there anyone out there who has an infant that has just been diagnosed? We feel so alone. This has come as a complete shock.

shimmereestar · Feb 2, 2008

We just found out the results of our genetic test on our 10 week old on Wednesday. She is postive for CF. We went in for a diaper rash and was told she was failure to thrive. They immediately whisked us to a specialist who admitted us to the hospital. We were there nine days. The sweat test failed and we had to wait on the genetic test. We came home for a week and then were back in the emergency room last Sat. and she was anemic. She had to have two blood transfusions. This Wed. we got the official word. We feel like we have been hit with a ton of bricks. Our doctors have been great but I'm so scared. I feel like I'm going to wake up one morning and find out I've lost her. Is their anyone out there feeling like this. Does my daughter have a chance? Is there anyone out there who has an infant that has just been diagnosed? We feel so alone. This has come as a complete shock.

shimmereestar · Feb 2, 2008

We just found out the results of our genetic test on our 10 week old on Wednesday. She is postive for CF. We went in for a diaper rash and was told she was failure to thrive. They immediately whisked us to a specialist who admitted us to the hospital. We were there nine days. The sweat test failed and we had to wait on the genetic test. We came home for a week and then were back in the emergency room last Sat. and she was anemic. She had to have two blood transfusions. This Wed. we got the official word. We feel like we have been hit with a ton of bricks. Our doctors have been great but I'm so scared. I feel like I'm going to wake up one morning and find out I've lost her. Is their anyone out there feeling like this. Does my daughter have a chance? Is there anyone out there who has an infant that has just been diagnosed? We feel so alone. This has come as a complete shock.

shimmereestar · Feb 2, 2008

We just found out the results of our genetic test on our 10 week old on Wednesday. She is postive for CF. We went in for a diaper rash and was told she was failure to thrive. They immediately whisked us to a specialist who admitted us to the hospital. We were there nine days. The sweat test failed and we had to wait on the genetic test. We came home for a week and then were back in the emergency room last Sat. and she was anemic. She had to have two blood transfusions. This Wed. we got the official word. We feel like we have been hit with a ton of bricks. Our doctors have been great but I'm so scared. I feel like I'm going to wake up one morning and find out I've lost her. Is their anyone out there feeling like this. Does my daughter have a chance? Is there anyone out there who has an infant that has just been diagnosed? We feel so alone. This has come as a complete shock.

shimmereestar · Feb 2, 2008

We just found out the results of our genetic test on our 10 week old on Wednesday. She is postive for CF. We went in for a diaper rash and was told she was failure to thrive. They immediately whisked us to a specialist who admitted us to the hospital. We were there nine days. The sweat test failed and we had to wait on the genetic test. We came home for a week and then were back in the emergency room last Sat. and she was anemic. She had to have two blood transfusions. This Wed. we got the official word. We feel like we have been hit with a ton of bricks. Our doctors have been great but I'm so scared. I feel like I'm going to wake up one morning and find out I've lost her. Is their anyone out there feeling like this. Does my daughter have a chance? Is there anyone out there who has an infant that has just been diagnosed? We feel so alone. This has come as a complete shock.

ktsmom · Feb 2, 2008

You will not be alone here. There are many, many people that have been where you are and we are here to help you, and listen.

What you have been through is an incredible shock. It does get easier, I promise. There has been so much progress made in treatments that your daughter has a terrific chance of growing to be old and wise.

There is lots more to say, but right now a word of advice - take care of what you read on the internet. Some of the information is outdated, and some of it will just plain ol' scare the pants off you unnecessarily. CFF.org is a good place for info.

Just love that little girl of yours, have faith and hope, and take one day at a time. Sounds like you are in good hands, care wise. How is she doing now? Have they started her on enzymes to help her grow and thrive? Let us know how it is going.

ktsmom · Feb 2, 2008

You will not be alone here. There are many, many people that have been where you are and we are here to help you, and listen.

What you have been through is an incredible shock. It does get easier, I promise. There has been so much progress made in treatments that your daughter has a terrific chance of growing to be old and wise.

There is lots more to say, but right now a word of advice - take care of what you read on the internet. Some of the information is outdated, and some of it will just plain ol' scare the pants off you unnecessarily. CFF.org is a good place for info.

Just love that little girl of yours, have faith and hope, and take one day at a time. Sounds like you are in good hands, care wise. How is she doing now? Have they started her on enzymes to help her grow and thrive? Let us know how it is going.

ktsmom · Feb 2, 2008

You will not be alone here. There are many, many people that have been where you are and we are here to help you, and listen.

What you have been through is an incredible shock. It does get easier, I promise. There has been so much progress made in treatments that your daughter has a terrific chance of growing to be old and wise.

There is lots more to say, but right now a word of advice - take care of what you read on the internet. Some of the information is outdated, and some of it will just plain ol' scare the pants off you unnecessarily. CFF.org is a good place for info.

Just love that little girl of yours, have faith and hope, and take one day at a time. Sounds like you are in good hands, care wise. How is she doing now? Have they started her on enzymes to help her grow and thrive? Let us know how it is going.

ktsmom · Feb 2, 2008

You will not be alone here. There are many, many people that have been where you are and we are here to help you, and listen.

What you have been through is an incredible shock. It does get easier, I promise. There has been so much progress made in treatments that your daughter has a terrific chance of growing to be old and wise.

There is lots more to say, but right now a word of advice - take care of what you read on the internet. Some of the information is outdated, and some of it will just plain ol' scare the pants off you unnecessarily. CFF.org is a good place for info.

Just love that little girl of yours, have faith and hope, and take one day at a time. Sounds like you are in good hands, care wise. How is she doing now? Have they started her on enzymes to help her grow and thrive? Let us know how it is going.

ktsmom · Feb 2, 2008

You will not be alone here. There are many, many people that have been where you are and we are here to help you, and listen.

What you have been through is an incredible shock. It does get easier, I promise. There has been so much progress made in treatments that your daughter has a terrific chance of growing to be old and wise.

There is lots more to say, but right now a word of advice - take care of what you read on the internet. Some of the information is outdated, and some of it will just plain ol' scare the pants off you unnecessarily. CFF.org is a good place for info.

Just love that little girl of yours, have faith and hope, and take one day at a time. Sounds like you are in good hands, care wise. How is she doing now? Have they started her on enzymes to help her grow and thrive? Let us know how it is going.

jaimers · Feb 2, 2008

i don't want to devalue your genuine fears and concerns for your daughter but i did just want to say welcome to the site, and also that there are a LOT of people on here that are living sucessful, full, accomplished and happy lives from teens to people in their 50s! even some people with the same 2 gene mutations have fared differently over the years so there's really no perfect formula to know how things will turn out. as you read more of the forum postings you'll see a lot of people talking about starting treatments such as chest PT and enzymes asap, being diligent in their treatment regimines with 100% compliance. its these types of things (along with new research and drug development) that allow us as CFers to live longer and healthier lives! you are definitely not alone here so please come with any questions/problems, etc you may have <img src="i/expressions/face-icon-small-smile.gif" border="0">

jaimers · Feb 2, 2008

i don't want to devalue your genuine fears and concerns for your daughter but i did just want to say welcome to the site, and also that there are a LOT of people on here that are living sucessful, full, accomplished and happy lives from teens to people in their 50s! even some people with the same 2 gene mutations have fared differently over the years so there's really no perfect formula to know how things will turn out. as you read more of the forum postings you'll see a lot of people talking about starting treatments such as chest PT and enzymes asap, being diligent in their treatment regimines with 100% compliance. its these types of things (along with new research and drug development) that allow us as CFers to live longer and healthier lives! you are definitely not alone here so please come with any questions/problems, etc you may have <img src="i/expressions/face-icon-small-smile.gif" border="0">

jaimers · Feb 2, 2008

i don't want to devalue your genuine fears and concerns for your daughter but i did just want to say welcome to the site, and also that there are a LOT of people on here that are living sucessful, full, accomplished and happy lives from teens to people in their 50s! even some people with the same 2 gene mutations have fared differently over the years so there's really no perfect formula to know how things will turn out. as you read more of the forum postings you'll see a lot of people talking about starting treatments such as chest PT and enzymes asap, being diligent in their treatment regimines with 100% compliance. its these types of things (along with new research and drug development) that allow us as CFers to live longer and healthier lives! you are definitely not alone here so please come with any questions/problems, etc you may have <img src="i/expressions/face-icon-small-smile.gif" border="0">

jaimers · Feb 2, 2008

i don't want to devalue your genuine fears and concerns for your daughter but i did just want to say welcome to the site, and also that there are a LOT of people on here that are living sucessful, full, accomplished and happy lives from teens to people in their 50s! even some people with the same 2 gene mutations have fared differently over the years so there's really no perfect formula to know how things will turn out. as you read more of the forum postings you'll see a lot of people talking about starting treatments such as chest PT and enzymes asap, being diligent in their treatment regimines with 100% compliance. its these types of things (along with new research and drug development) that allow us as CFers to live longer and healthier lives! you are definitely not alone here so please come with any questions/problems, etc you may have <img src="i/expressions/face-icon-small-smile.gif" border="0">

jaimers · Feb 2, 2008

i don't want to devalue your genuine fears and concerns for your daughter but i did just want to say welcome to the site, and also that there are a LOT of people on here that are living sucessful, full, accomplished and happy lives from teens to people in their 50s! even some people with the same 2 gene mutations have fared differently over the years so there's really no perfect formula to know how things will turn out. as you read more of the forum postings you'll see a lot of people talking about starting treatments such as chest PT and enzymes asap, being diligent in their treatment regimines with 100% compliance. its these types of things (along with new research and drug development) that allow us as CFers to live longer and healthier lives! you are definitely not alone here so please come with any questions/problems, etc you may have <img src="i/expressions/face-icon-small-smile.gif" border="0">

froggymama · Feb 2, 2008

Oh, you are not alone. We had the same experience when we took our four month old daughter in for her check up and then spent three weeks in the hospital because of 'failure to thrive'. She was anemic and malnourished, but now she's a super healthy, active beyond belief, happy, thriving toddler. I know how tough this is, and heartbreaking, but you'll be okay. We felt like our world crumbled beneath us, that nothing would ever be the same again. But life goes on, and even though things may get tough, life will feel normal again. Your daughter and the joy you receive from being a parent will far outweigh the sorrow of CF. I believe that our kids will see a cure. And if not a cure, they will have treatments allowing them to live a long and healthy life. The first few months are the hardest. It's horrible and you feel helpless and sometimes hopeless. But my best advice would be to enjoy every moment of your daughter's life, be vigilent with treatments and meds, ask your doctors a ton of questions, stay on this website for comfort and information, and try not to do too much research on the internet. You'll find outdated and frightening info, that isn't helpful or even accurate. CF isn't a death sentence. It's a life sentence. It's a reason to celebrate and enjoy life, to know how truly precious each breath is. Right now there are people with CF living well into their 30's and 40's and I believe our kids will live to 100. Feel free to email me with any questions or concerns. egussie1977@aol.com -- Elise

froggymama · Feb 2, 2008

Oh, you are not alone. We had the same experience when we took our four month old daughter in for her check up and then spent three weeks in the hospital because of 'failure to thrive'. She was anemic and malnourished, but now she's a super healthy, active beyond belief, happy, thriving toddler. I know how tough this is, and heartbreaking, but you'll be okay. We felt like our world crumbled beneath us, that nothing would ever be the same again. But life goes on, and even though things may get tough, life will feel normal again. Your daughter and the joy you receive from being a parent will far outweigh the sorrow of CF. I believe that our kids will see a cure. And if not a cure, they will have treatments allowing them to live a long and healthy life. The first few months are the hardest. It's horrible and you feel helpless and sometimes hopeless. But my best advice would be to enjoy every moment of your daughter's life, be vigilent with treatments and meds, ask your doctors a ton of questions, stay on this website for comfort and information, and try not to do too much research on the internet. You'll find outdated and frightening info, that isn't helpful or even accurate. CF isn't a death sentence. It's a life sentence. It's a reason to celebrate and enjoy life, to know how truly precious each breath is. Right now there are people with CF living well into their 30's and 40's and I believe our kids will live to 100. Feel free to email me with any questions or concerns. egussie1977@aol.com -- Elise

froggymama · Feb 2, 2008

Oh, you are not alone. We had the same experience when we took our four month old daughter in for her check up and then spent three weeks in the hospital because of 'failure to thrive'. She was anemic and malnourished, but now she's a super healthy, active beyond belief, happy, thriving toddler. I know how tough this is, and heartbreaking, but you'll be okay. We felt like our world crumbled beneath us, that nothing would ever be the same again. But life goes on, and even though things may get tough, life will feel normal again. Your daughter and the joy you receive from being a parent will far outweigh the sorrow of CF. I believe that our kids will see a cure. And if not a cure, they will have treatments allowing them to live a long and healthy life. The first few months are the hardest. It's horrible and you feel helpless and sometimes hopeless. But my best advice would be to enjoy every moment of your daughter's life, be vigilent with treatments and meds, ask your doctors a ton of questions, stay on this website for comfort and information, and try not to do too much research on the internet. You'll find outdated and frightening info, that isn't helpful or even accurate. CF isn't a death sentence. It's a life sentence. It's a reason to celebrate and enjoy life, to know how truly precious each breath is. Right now there are people with CF living well into their 30's and 40's and I believe our kids will live to 100. Feel free to email me with any questions or concerns. egussie1977@aol.com -- Elise

froggymama · Feb 2, 2008

Oh, you are not alone. We had the same experience when we took our four month old daughter in for her check up and then spent three weeks in the hospital because of 'failure to thrive'. She was anemic and malnourished, but now she's a super healthy, active beyond belief, happy, thriving toddler. I know how tough this is, and heartbreaking, but you'll be okay. We felt like our world crumbled beneath us, that nothing would ever be the same again. But life goes on, and even though things may get tough, life will feel normal again. Your daughter and the joy you receive from being a parent will far outweigh the sorrow of CF. I believe that our kids will see a cure. And if not a cure, they will have treatments allowing them to live a long and healthy life. The first few months are the hardest. It's horrible and you feel helpless and sometimes hopeless. But my best advice would be to enjoy every moment of your daughter's life, be vigilent with treatments and meds, ask your doctors a ton of questions, stay on this website for comfort and information, and try not to do too much research on the internet. You'll find outdated and frightening info, that isn't helpful or even accurate. CF isn't a death sentence. It's a life sentence. It's a reason to celebrate and enjoy life, to know how truly precious each breath is. Right now there are people with CF living well into their 30's and 40's and I believe our kids will live to 100. Feel free to email me with any questions or concerns. egussie1977@aol.com -- Elise

froggymama · Feb 2, 2008

Oh, you are not alone. We had the same experience when we took our four month old daughter in for her check up and then spent three weeks in the hospital because of 'failure to thrive'. She was anemic and malnourished, but now she's a super healthy, active beyond belief, happy, thriving toddler. I know how tough this is, and heartbreaking, but you'll be okay. We felt like our world crumbled beneath us, that nothing would ever be the same again. But life goes on, and even though things may get tough, life will feel normal again. Your daughter and the joy you receive from being a parent will far outweigh the sorrow of CF. I believe that our kids will see a cure. And if not a cure, they will have treatments allowing them to live a long and healthy life. The first few months are the hardest. It's horrible and you feel helpless and sometimes hopeless. But my best advice would be to enjoy every moment of your daughter's life, be vigilent with treatments and meds, ask your doctors a ton of questions, stay on this website for comfort and information, and try not to do too much research on the internet. You'll find outdated and frightening info, that isn't helpful or even accurate. CF isn't a death sentence. It's a life sentence. It's a reason to celebrate and enjoy life, to know how truly precious each breath is. Right now there are people with CF living well into their 30's and 40's and I believe our kids will live to 100. Feel free to email me with any questions or concerns. egussie1977@aol.com -- Elise

I feel like they have given my daughter a death sentence

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