theLostMiler
New member
Harriett,
<br />
<br />I loved what you said, I think that was perfect way to describe it.
<br />
<br />I loved what you said, I think that was perfect way to describe it.
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A bit depressed
- Thread starter ashinhoc
- Start date
Hi. Congrats on your new baby!!! I was in your shoes a year and a half ago. My daughter was diagnosed with CF at 6 days old and I knew nothing about it while my husband had lost a friend at age 20 from it. So I went into a pretty deep depression.
But, Maggie is now 19 months old and hasn't even had so much as a cold. She has been exposed to them but we are very careful with handwashing and using lysol wipes on common surfaces (light switches, door knobs). She has had a few minor issues with weight gain but they were fixed quickly with a switch of the enzymes.
There is A LOT of old, bad information about CF on the web so don't do what I did. I read them over and over and made myself sick. Stick to this forum and cff.org. That's all you need.
They say that those born today with CF will have a life expectancy of 50-60 years! So while that may not seem like enough... that gives us time to find a cure or the next best thing which are those drugs in the pipeline RIGHT NOW that can alter the cf gene to make it so "cf is something people die WITH not FROM".
I hope this is helping, I tend to ramble. CF effects everyone differently. Find a cf doctor that you trust and learn to be an advocate for your child. Don't accept that CF will mean a sickly, weak child no matter what -it doesn't. You have the benefit of early diagnosis and prevantive care and knowing what to look out for. Life will be different than you planned, yes. But you have the power to help your child thrive.
But, Maggie is now 19 months old and hasn't even had so much as a cold. She has been exposed to them but we are very careful with handwashing and using lysol wipes on common surfaces (light switches, door knobs). She has had a few minor issues with weight gain but they were fixed quickly with a switch of the enzymes.
There is A LOT of old, bad information about CF on the web so don't do what I did. I read them over and over and made myself sick. Stick to this forum and cff.org. That's all you need.
They say that those born today with CF will have a life expectancy of 50-60 years! So while that may not seem like enough... that gives us time to find a cure or the next best thing which are those drugs in the pipeline RIGHT NOW that can alter the cf gene to make it so "cf is something people die WITH not FROM".
I hope this is helping, I tend to ramble. CF effects everyone differently. Find a cf doctor that you trust and learn to be an advocate for your child. Don't accept that CF will mean a sickly, weak child no matter what -it doesn't. You have the benefit of early diagnosis and prevantive care and knowing what to look out for. Life will be different than you planned, yes. But you have the power to help your child thrive.
Hi. Congrats on your new baby!!! I was in your shoes a year and a half ago. My daughter was diagnosed with CF at 6 days old and I knew nothing about it while my husband had lost a friend at age 20 from it. So I went into a pretty deep depression.
But, Maggie is now 19 months old and hasn't even had so much as a cold. She has been exposed to them but we are very careful with handwashing and using lysol wipes on common surfaces (light switches, door knobs). She has had a few minor issues with weight gain but they were fixed quickly with a switch of the enzymes.
There is A LOT of old, bad information about CF on the web so don't do what I did. I read them over and over and made myself sick. Stick to this forum and cff.org. That's all you need.
They say that those born today with CF will have a life expectancy of 50-60 years! So while that may not seem like enough... that gives us time to find a cure or the next best thing which are those drugs in the pipeline RIGHT NOW that can alter the cf gene to make it so "cf is something people die WITH not FROM".
I hope this is helping, I tend to ramble. CF effects everyone differently. Find a cf doctor that you trust and learn to be an advocate for your child. Don't accept that CF will mean a sickly, weak child no matter what -it doesn't. You have the benefit of early diagnosis and prevantive care and knowing what to look out for. Life will be different than you planned, yes. But you have the power to help your child thrive.
But, Maggie is now 19 months old and hasn't even had so much as a cold. She has been exposed to them but we are very careful with handwashing and using lysol wipes on common surfaces (light switches, door knobs). She has had a few minor issues with weight gain but they were fixed quickly with a switch of the enzymes.
There is A LOT of old, bad information about CF on the web so don't do what I did. I read them over and over and made myself sick. Stick to this forum and cff.org. That's all you need.
They say that those born today with CF will have a life expectancy of 50-60 years! So while that may not seem like enough... that gives us time to find a cure or the next best thing which are those drugs in the pipeline RIGHT NOW that can alter the cf gene to make it so "cf is something people die WITH not FROM".
I hope this is helping, I tend to ramble. CF effects everyone differently. Find a cf doctor that you trust and learn to be an advocate for your child. Don't accept that CF will mean a sickly, weak child no matter what -it doesn't. You have the benefit of early diagnosis and prevantive care and knowing what to look out for. Life will be different than you planned, yes. But you have the power to help your child thrive.
Hi. Congrats on your new baby!!! I was in your shoes a year and a half ago. My daughter was diagnosed with CF at 6 days old and I knew nothing about it while my husband had lost a friend at age 20 from it. So I went into a pretty deep depression.
<br />But, Maggie is now 19 months old and hasn't even had so much as a cold. She has been exposed to them but we are very careful with handwashing and using lysol wipes on common surfaces (light switches, door knobs). She has had a few minor issues with weight gain but they were fixed quickly with a switch of the enzymes.
<br />There is A LOT of old, bad information about CF on the web so don't do what I did. I read them over and over and made myself sick. Stick to this forum and cff.org. That's all you need.
<br />They say that those born today with CF will have a life expectancy of 50-60 years! So while that may not seem like enough... that gives us time to find a cure or the next best thing which are those drugs in the pipeline RIGHT NOW that can alter the cf gene to make it so "cf is something people die WITH not FROM".
<br />I hope this is helping, I tend to ramble. CF effects everyone differently. Find a cf doctor that you trust and learn to be an advocate for your child. Don't accept that CF will mean a sickly, weak child no matter what -it doesn't. You have the benefit of early diagnosis and prevantive care and knowing what to look out for. Life will be different than you planned, yes. But you have the power to help your child thrive.
<br />But, Maggie is now 19 months old and hasn't even had so much as a cold. She has been exposed to them but we are very careful with handwashing and using lysol wipes on common surfaces (light switches, door knobs). She has had a few minor issues with weight gain but they were fixed quickly with a switch of the enzymes.
<br />There is A LOT of old, bad information about CF on the web so don't do what I did. I read them over and over and made myself sick. Stick to this forum and cff.org. That's all you need.
<br />They say that those born today with CF will have a life expectancy of 50-60 years! So while that may not seem like enough... that gives us time to find a cure or the next best thing which are those drugs in the pipeline RIGHT NOW that can alter the cf gene to make it so "cf is something people die WITH not FROM".
<br />I hope this is helping, I tend to ramble. CF effects everyone differently. Find a cf doctor that you trust and learn to be an advocate for your child. Don't accept that CF will mean a sickly, weak child no matter what -it doesn't. You have the benefit of early diagnosis and prevantive care and knowing what to look out for. Life will be different than you planned, yes. But you have the power to help your child thrive.
I REALLY appreciate all y'alls help! My wife and I went denial, shock, and then depressed till we're in whatever state we are in now. That being said, I'd go through everything I'd need to just so my son is happy. This day and age, it's very hard not to go straight to the net when someone says 'your child has a disease that you don't know much about but don't go online because it would be better to talk to a doctor about it but you can't go to a pulmonologist for two weeks'. There's no way anyone could go that long without at least hitting up wiki for something that life changing. Well wiki turned into a google search for false-positives for the infant screening, which turned into a google search for 'a day in the life of a child with cf', then 'common medications for cf', etc etc etc with hitting up some blogs on the way. Oh well, I think I've learned a lot from my post specially from you all that replied. (my wife did find a good blog called radek loves to breathe which is very day to day oriented and informational).
Well, I'll try to not be debbie downer and I do appreciate the positivity!
Well, I'll try to not be debbie downer and I do appreciate the positivity!
I REALLY appreciate all y'alls help! My wife and I went denial, shock, and then depressed till we're in whatever state we are in now. That being said, I'd go through everything I'd need to just so my son is happy. This day and age, it's very hard not to go straight to the net when someone says 'your child has a disease that you don't know much about but don't go online because it would be better to talk to a doctor about it but you can't go to a pulmonologist for two weeks'. There's no way anyone could go that long without at least hitting up wiki for something that life changing. Well wiki turned into a google search for false-positives for the infant screening, which turned into a google search for 'a day in the life of a child with cf', then 'common medications for cf', etc etc etc with hitting up some blogs on the way. Oh well, I think I've learned a lot from my post specially from you all that replied. (my wife did find a good blog called radek loves to breathe which is very day to day oriented and informational).
Well, I'll try to not be debbie downer and I do appreciate the positivity!
Well, I'll try to not be debbie downer and I do appreciate the positivity!
I REALLY appreciate all y'alls help! My wife and I went denial, shock, and then depressed till we're in whatever state we are in now. That being said, I'd go through everything I'd need to just so my son is happy. This day and age, it's very hard not to go straight to the net when someone says 'your child has a disease that you don't know much about but don't go online because it would be better to talk to a doctor about it but you can't go to a pulmonologist for two weeks'. There's no way anyone could go that long without at least hitting up wiki for something that life changing. Well wiki turned into a google search for false-positives for the infant screening, which turned into a google search for 'a day in the life of a child with cf', then 'common medications for cf', etc etc etc with hitting up some blogs on the way. Oh well, I think I've learned a lot from my post specially from you all that replied. (my wife did find a good blog called radek loves to breathe which is very day to day oriented and informational).
<br />
<br />Well, I'll try to not be debbie downer and I do appreciate the positivity!
<br />
<br />Well, I'll try to not be debbie downer and I do appreciate the positivity!
My daughter is a very active 17 year old teenager. We were diagnosed when i was pregnant, thanks to a very good ultrasound tech. In 1993 there was no such thing as the internet and so we went straight to the library, talk about out dated and a downer. Since then we typically have stuck with our Clinic and the Dr.'s advice. Our nurses, are not just our nurses' but are our friends also. We have met some wonderful people through our clinic that have been very helpful. When the internet did surface, I did some looking around, but like others have said, be very careful of what you read. Our daughter is a runner with her cross country team and track team in high school, and she has been on varsity for 3 years. Her doctor loves it that she runs. it is very good exercise for her in general, but also for her lungs.
Since she is in her senior year we are doing the typical looking at colleges-you are a long way from that, but i find sending her out into the big world, cf or no cf, is scarier than the cf.
One bit of advice i could give would be that you HAVE to follow your doctors orders for therapies, and meds. Having been diagnosed early, you have a great opportunity to just make this part of your life, not your life, but part of your life, like making dinner, doing laundry, because these things just have to be done. We have always felt that doing her meds was not her life, but just something we have to make time for for her to live her life to her fullest. When she was younger, she was allowed a 5 minute pity party for herself, when she called it, once in a while. Now, she just gets mad at the CF-which in turn makes her do her therapies. All the meds she is on now, none but one were around 17 years ago-so see how things have advanced so much!
A few years ago she RAN the Great Strides walk with some of her friends. Her Dr. was there and thought is was great. Good Luck and if you have any questions-just ask!!
Your son is very cute, and just enjoy this time with him because before you know it he will be graduating from High School, headed out to college and onto his life as an adult. You will never get this time he is an infant back. So enjoy him!!!
Since she is in her senior year we are doing the typical looking at colleges-you are a long way from that, but i find sending her out into the big world, cf or no cf, is scarier than the cf.
One bit of advice i could give would be that you HAVE to follow your doctors orders for therapies, and meds. Having been diagnosed early, you have a great opportunity to just make this part of your life, not your life, but part of your life, like making dinner, doing laundry, because these things just have to be done. We have always felt that doing her meds was not her life, but just something we have to make time for for her to live her life to her fullest. When she was younger, she was allowed a 5 minute pity party for herself, when she called it, once in a while. Now, she just gets mad at the CF-which in turn makes her do her therapies. All the meds she is on now, none but one were around 17 years ago-so see how things have advanced so much!
A few years ago she RAN the Great Strides walk with some of her friends. Her Dr. was there and thought is was great. Good Luck and if you have any questions-just ask!!
Your son is very cute, and just enjoy this time with him because before you know it he will be graduating from High School, headed out to college and onto his life as an adult. You will never get this time he is an infant back. So enjoy him!!!
My daughter is a very active 17 year old teenager. We were diagnosed when i was pregnant, thanks to a very good ultrasound tech. In 1993 there was no such thing as the internet and so we went straight to the library, talk about out dated and a downer. Since then we typically have stuck with our Clinic and the Dr.'s advice. Our nurses, are not just our nurses' but are our friends also. We have met some wonderful people through our clinic that have been very helpful. When the internet did surface, I did some looking around, but like others have said, be very careful of what you read. Our daughter is a runner with her cross country team and track team in high school, and she has been on varsity for 3 years. Her doctor loves it that she runs. it is very good exercise for her in general, but also for her lungs.
Since she is in her senior year we are doing the typical looking at colleges-you are a long way from that, but i find sending her out into the big world, cf or no cf, is scarier than the cf.
One bit of advice i could give would be that you HAVE to follow your doctors orders for therapies, and meds. Having been diagnosed early, you have a great opportunity to just make this part of your life, not your life, but part of your life, like making dinner, doing laundry, because these things just have to be done. We have always felt that doing her meds was not her life, but just something we have to make time for for her to live her life to her fullest. When she was younger, she was allowed a 5 minute pity party for herself, when she called it, once in a while. Now, she just gets mad at the CF-which in turn makes her do her therapies. All the meds she is on now, none but one were around 17 years ago-so see how things have advanced so much!
A few years ago she RAN the Great Strides walk with some of her friends. Her Dr. was there and thought is was great. Good Luck and if you have any questions-just ask!!
Your son is very cute, and just enjoy this time with him because before you know it he will be graduating from High School, headed out to college and onto his life as an adult. You will never get this time he is an infant back. So enjoy him!!!
Since she is in her senior year we are doing the typical looking at colleges-you are a long way from that, but i find sending her out into the big world, cf or no cf, is scarier than the cf.
One bit of advice i could give would be that you HAVE to follow your doctors orders for therapies, and meds. Having been diagnosed early, you have a great opportunity to just make this part of your life, not your life, but part of your life, like making dinner, doing laundry, because these things just have to be done. We have always felt that doing her meds was not her life, but just something we have to make time for for her to live her life to her fullest. When she was younger, she was allowed a 5 minute pity party for herself, when she called it, once in a while. Now, she just gets mad at the CF-which in turn makes her do her therapies. All the meds she is on now, none but one were around 17 years ago-so see how things have advanced so much!
A few years ago she RAN the Great Strides walk with some of her friends. Her Dr. was there and thought is was great. Good Luck and if you have any questions-just ask!!
Your son is very cute, and just enjoy this time with him because before you know it he will be graduating from High School, headed out to college and onto his life as an adult. You will never get this time he is an infant back. So enjoy him!!!
My daughter is a very active 17 year old teenager. We were diagnosed when i was pregnant, thanks to a very good ultrasound tech. In 1993 there was no such thing as the internet and so we went straight to the library, talk about out dated and a downer. Since then we typically have stuck with our Clinic and the Dr.'s advice. Our nurses, are not just our nurses' but are our friends also. We have met some wonderful people through our clinic that have been very helpful. When the internet did surface, I did some looking around, but like others have said, be very careful of what you read. Our daughter is a runner with her cross country team and track team in high school, and she has been on varsity for 3 years. Her doctor loves it that she runs. it is very good exercise for her in general, but also for her lungs.
<br />
<br />Since she is in her senior year we are doing the typical looking at colleges-you are a long way from that, but i find sending her out into the big world, cf or no cf, is scarier than the cf.
<br />
<br />One bit of advice i could give would be that you HAVE to follow your doctors orders for therapies, and meds. Having been diagnosed early, you have a great opportunity to just make this part of your life, not your life, but part of your life, like making dinner, doing laundry, because these things just have to be done. We have always felt that doing her meds was not her life, but just something we have to make time for for her to live her life to her fullest. When she was younger, she was allowed a 5 minute pity party for herself, when she called it, once in a while. Now, she just gets mad at the CF-which in turn makes her do her therapies. All the meds she is on now, none but one were around 17 years ago-so see how things have advanced so much!
<br />
<br />A few years ago she RAN the Great Strides walk with some of her friends. Her Dr. was there and thought is was great. Good Luck and if you have any questions-just ask!!
<br />
<br />Your son is very cute, and just enjoy this time with him because before you know it he will be graduating from High School, headed out to college and onto his life as an adult. You will never get this time he is an infant back. So enjoy him!!!
<br />
<br />Since she is in her senior year we are doing the typical looking at colleges-you are a long way from that, but i find sending her out into the big world, cf or no cf, is scarier than the cf.
<br />
<br />One bit of advice i could give would be that you HAVE to follow your doctors orders for therapies, and meds. Having been diagnosed early, you have a great opportunity to just make this part of your life, not your life, but part of your life, like making dinner, doing laundry, because these things just have to be done. We have always felt that doing her meds was not her life, but just something we have to make time for for her to live her life to her fullest. When she was younger, she was allowed a 5 minute pity party for herself, when she called it, once in a while. Now, she just gets mad at the CF-which in turn makes her do her therapies. All the meds she is on now, none but one were around 17 years ago-so see how things have advanced so much!
<br />
<br />A few years ago she RAN the Great Strides walk with some of her friends. Her Dr. was there and thought is was great. Good Luck and if you have any questions-just ask!!
<br />
<br />Your son is very cute, and just enjoy this time with him because before you know it he will be graduating from High School, headed out to college and onto his life as an adult. You will never get this time he is an infant back. So enjoy him!!!
My grandson was dx in March and was in the hospital for over 3 weeks. Once he came home he developed one infection. Other than boosting up his therapies with antibiotics and TOBI he never missed a beat. I can hardly keep up with him. He runs, plays and gets in to everything just like any other 2 1/2 year old. He hardly ever coughs and may be a little small in stature but I believe he will have a long, full and meangingful life because he is just so darn active!
My grandson was dx in March and was in the hospital for over 3 weeks. Once he came home he developed one infection. Other than boosting up his therapies with antibiotics and TOBI he never missed a beat. I can hardly keep up with him. He runs, plays and gets in to everything just like any other 2 1/2 year old. He hardly ever coughs and may be a little small in stature but I believe he will have a long, full and meangingful life because he is just so darn active!
My grandson was dx in March and was in the hospital for over 3 weeks. Once he came home he developed one infection. Other than boosting up his therapies with antibiotics and TOBI he never missed a beat. I can hardly keep up with him. He runs, plays and gets in to everything just like any other 2 1/2 year old. He hardly ever coughs and may be a little small in stature but I believe he will have a long, full and meangingful life because he is just so darn active!
Georgiatwins
New member
Take heart in knowing that at least you found out early! My husband and I keep telling ourselves, that things could always be worse! I delivered identical twin girls on 7/7/10 and 4 weeks later through a DNA test found out that they have CF. We went through the same devastation for about a week until we just looked at the bright side of things. Our girls are healthy, happy, and growing (now that they are on enzymes!). We will do whatever it takes to keep it that way <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for some advice from a new CF parent...don't research ALL the CF sites. Stick to the main cff.org site. THat's where you'll get all the information you need to know about the disease. This advice comes directly from my CF team for my girls. They said that if you read all the other sites, you'll just worry. Being that the diagnosis was found so early..THANKS to newborn screening, our kids have a fighting chance at a LONG happy life, and possibly a cure!! Take a look at the pipeline on www.cff.org...you'll see that progress is being made!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> That's positive news!! My husband and I have the make the best of a tiring situation and it's hard not to look at our precious girls and not smile because they have made our life complete.
It's ok to be depressed..been there, done that <img src="i/expressions/face-icon-small-smile.gif" border="0">...I'm moving on and looking towards all the fun things I plan to do with my girls as they grow up! As for now, I'm just keeping them healthy!
Good Luck to you and message me if you need someone else with a newborn going through the same thing to talk to <img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelley
As for some advice from a new CF parent...don't research ALL the CF sites. Stick to the main cff.org site. THat's where you'll get all the information you need to know about the disease. This advice comes directly from my CF team for my girls. They said that if you read all the other sites, you'll just worry. Being that the diagnosis was found so early..THANKS to newborn screening, our kids have a fighting chance at a LONG happy life, and possibly a cure!! Take a look at the pipeline on www.cff.org...you'll see that progress is being made!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> That's positive news!! My husband and I have the make the best of a tiring situation and it's hard not to look at our precious girls and not smile because they have made our life complete.
It's ok to be depressed..been there, done that <img src="i/expressions/face-icon-small-smile.gif" border="0">...I'm moving on and looking towards all the fun things I plan to do with my girls as they grow up! As for now, I'm just keeping them healthy!
Good Luck to you and message me if you need someone else with a newborn going through the same thing to talk to <img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelley
Georgiatwins
New member
Take heart in knowing that at least you found out early! My husband and I keep telling ourselves, that things could always be worse! I delivered identical twin girls on 7/7/10 and 4 weeks later through a DNA test found out that they have CF. We went through the same devastation for about a week until we just looked at the bright side of things. Our girls are healthy, happy, and growing (now that they are on enzymes!). We will do whatever it takes to keep it that way <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for some advice from a new CF parent...don't research ALL the CF sites. Stick to the main cff.org site. THat's where you'll get all the information you need to know about the disease. This advice comes directly from my CF team for my girls. They said that if you read all the other sites, you'll just worry. Being that the diagnosis was found so early..THANKS to newborn screening, our kids have a fighting chance at a LONG happy life, and possibly a cure!! Take a look at the pipeline on www.cff.org...you'll see that progress is being made!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> That's positive news!! My husband and I have the make the best of a tiring situation and it's hard not to look at our precious girls and not smile because they have made our life complete.
It's ok to be depressed..been there, done that <img src="i/expressions/face-icon-small-smile.gif" border="0">...I'm moving on and looking towards all the fun things I plan to do with my girls as they grow up! As for now, I'm just keeping them healthy!
Good Luck to you and message me if you need someone else with a newborn going through the same thing to talk to <img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelley
As for some advice from a new CF parent...don't research ALL the CF sites. Stick to the main cff.org site. THat's where you'll get all the information you need to know about the disease. This advice comes directly from my CF team for my girls. They said that if you read all the other sites, you'll just worry. Being that the diagnosis was found so early..THANKS to newborn screening, our kids have a fighting chance at a LONG happy life, and possibly a cure!! Take a look at the pipeline on www.cff.org...you'll see that progress is being made!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> That's positive news!! My husband and I have the make the best of a tiring situation and it's hard not to look at our precious girls and not smile because they have made our life complete.
It's ok to be depressed..been there, done that <img src="i/expressions/face-icon-small-smile.gif" border="0">...I'm moving on and looking towards all the fun things I plan to do with my girls as they grow up! As for now, I'm just keeping them healthy!
Good Luck to you and message me if you need someone else with a newborn going through the same thing to talk to <img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelley
Georgiatwins
New member
Take heart in knowing that at least you found out early! My husband and I keep telling ourselves, that things could always be worse! I delivered identical twin girls on 7/7/10 and 4 weeks later through a DNA test found out that they have CF. We went through the same devastation for about a week until we just looked at the bright side of things. Our girls are healthy, happy, and growing (now that they are on enzymes!). We will do whatever it takes to keep it that way <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />As for some advice from a new CF parent...don't research ALL the CF sites. Stick to the main cff.org site. THat's where you'll get all the information you need to know about the disease. This advice comes directly from my CF team for my girls. They said that if you read all the other sites, you'll just worry. Being that the diagnosis was found so early..THANKS to newborn screening, our kids have a fighting chance at a LONG happy life, and possibly a cure!! Take a look at the pipeline on www.cff.org...you'll see that progress is being made!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> That's positive news!! My husband and I have the make the best of a tiring situation and it's hard not to look at our precious girls and not smile because they have made our life complete.
<br />
<br />It's ok to be depressed..been there, done that <img src="i/expressions/face-icon-small-smile.gif" border="0">...I'm moving on and looking towards all the fun things I plan to do with my girls as they grow up! As for now, I'm just keeping them healthy!
<br />
<br />Good Luck to you and message me if you need someone else with a newborn going through the same thing to talk to <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Kelley
<br />
<br />As for some advice from a new CF parent...don't research ALL the CF sites. Stick to the main cff.org site. THat's where you'll get all the information you need to know about the disease. This advice comes directly from my CF team for my girls. They said that if you read all the other sites, you'll just worry. Being that the diagnosis was found so early..THANKS to newborn screening, our kids have a fighting chance at a LONG happy life, and possibly a cure!! Take a look at the pipeline on www.cff.org...you'll see that progress is being made!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> That's positive news!! My husband and I have the make the best of a tiring situation and it's hard not to look at our precious girls and not smile because they have made our life complete.
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<br />It's ok to be depressed..been there, done that <img src="i/expressions/face-icon-small-smile.gif" border="0">...I'm moving on and looking towards all the fun things I plan to do with my girls as they grow up! As for now, I'm just keeping them healthy!
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<br />Good Luck to you and message me if you need someone else with a newborn going through the same thing to talk to <img src="i/expressions/face-icon-small-smile.gif" border="0">
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<br />Kelley