New to all this

[JellyBean3]

I'm sorry for sounding so ignorant, I'm extremely uneducated about Cystic Fibrosis and need some insight into a family life where one or more children have Cystic Fibrosis. I am currently 24+ weeks pregnant and the doctors are looking at CF as a cause for light spots on the babys' heart and small bowels. Also, I have just recieved my test results that show that I am in fact a Carrier of CF and as for my husband we will not find out if he is a carrier until after he comes back from his business trip around Dec 20. Therefore it is not confirmed that my unborn child has CF but I was told I have a 60% chance that the baby does. While I am trying to hold onto my last hope (my husband being neg.) I also want to find out how this will effect our lives. I have 1 son who is 6 years old and is extremely excited about having a little sister, CF has not played a roll in our lives until about a 1.5 weeks ago. Here are some questions I do have...

-Will I be able to return to a full time job and place my child in a daycare/dayhome setting?
-Will our family still get to go on family vacations?
-If you have other children in your family who don't have CF, how has CF affected their lives and relationship with the child that does have CF?
-Is there such thing as home care nurses for children with CF?
-What types of activities can the child with CF not take part in?
-What types of outside support should I begin to put in place for a child that does have CF?
-Have any of the children in the family that don't have CF been to couselling to deal with feelings or questions they may have about the other child?
-After finding out that you were positively carrying a child with CF, how did you deal with it? (I am not coping too well at the possibility let alone a for sure outcome)
-What led to initial testing for CF in your child (especially if you found out in utero)? Ex. light spots etc.
-Was there any family history that you knew of for CF?


As well, absolutely any insight on how life will be affected with a CF child would be unbelievably appreciated. This is a very tough time for my husband and I, as well as my parents who had no idea that either of them could be a carrier as this is the first time CF has ever been a possible issue in our family. My husband and I discussed, prior to becoming pregnant, that we were just not able to deal with a child with severe handicaps, now it seems as though we have no choice. Genetic screening prior to pregnancy is not an option where we are so I did the triple screen as soon as I could and that came back with an extememly low result 1:50,000 of having a child with a genetic problem, we were elated (even though we had already suspected it would come back showing a very low chance), however a triple screen does not test for CF. While I have heard of CF I had absolutely no idea what it was. I'm slowly trying to educate myself, I have a good base as to what it is but I need to know how this will affect our daily lives. I also understand that CF is different for everyone and every family but any insight is better than nothing.

Thank you for your patience and any feed back
Jessie

 

[JellyBean3]

I'm sorry for sounding so ignorant, I'm extremely uneducated about Cystic Fibrosis and need some insight into a family life where one or more children have Cystic Fibrosis. I am currently 24+ weeks pregnant and the doctors are looking at CF as a cause for light spots on the babys' heart and small bowels. Also, I have just recieved my test results that show that I am in fact a Carrier of CF and as for my husband we will not find out if he is a carrier until after he comes back from his business trip around Dec 20. Therefore it is not confirmed that my unborn child has CF but I was told I have a 60% chance that the baby does. While I am trying to hold onto my last hope (my husband being neg.) I also want to find out how this will effect our lives. I have 1 son who is 6 years old and is extremely excited about having a little sister, CF has not played a roll in our lives until about a 1.5 weeks ago. Here are some questions I do have...

-Will I be able to return to a full time job and place my child in a daycare/dayhome setting?
-Will our family still get to go on family vacations?
-If you have other children in your family who don't have CF, how has CF affected their lives and relationship with the child that does have CF?
-Is there such thing as home care nurses for children with CF?
-What types of activities can the child with CF not take part in?
-What types of outside support should I begin to put in place for a child that does have CF?
-Have any of the children in the family that don't have CF been to couselling to deal with feelings or questions they may have about the other child?
-After finding out that you were positively carrying a child with CF, how did you deal with it? (I am not coping too well at the possibility let alone a for sure outcome)
-What led to initial testing for CF in your child (especially if you found out in utero)? Ex. light spots etc.
-Was there any family history that you knew of for CF?


As well, absolutely any insight on how life will be affected with a CF child would be unbelievably appreciated. This is a very tough time for my husband and I, as well as my parents who had no idea that either of them could be a carrier as this is the first time CF has ever been a possible issue in our family. My husband and I discussed, prior to becoming pregnant, that we were just not able to deal with a child with severe handicaps, now it seems as though we have no choice. Genetic screening prior to pregnancy is not an option where we are so I did the triple screen as soon as I could and that came back with an extememly low result 1:50,000 of having a child with a genetic problem, we were elated (even though we had already suspected it would come back showing a very low chance), however a triple screen does not test for CF. While I have heard of CF I had absolutely no idea what it was. I'm slowly trying to educate myself, I have a good base as to what it is but I need to know how this will affect our daily lives. I also understand that CF is different for everyone and every family but any insight is better than nothing.

Thank you for your patience and any feed back
Jessie

 

[JellyBean3]

I'm sorry for sounding so ignorant, I'm extremely uneducated about Cystic Fibrosis and need some insight into a family life where one or more children have Cystic Fibrosis. I am currently 24+ weeks pregnant and the doctors are looking at CF as a cause for light spots on the babys' heart and small bowels. Also, I have just recieved my test results that show that I am in fact a Carrier of CF and as for my husband we will not find out if he is a carrier until after he comes back from his business trip around Dec 20. Therefore it is not confirmed that my unborn child has CF but I was told I have a 60% chance that the baby does. While I am trying to hold onto my last hope (my husband being neg.) I also want to find out how this will effect our lives. I have 1 son who is 6 years old and is extremely excited about having a little sister, CF has not played a roll in our lives until about a 1.5 weeks ago. Here are some questions I do have...

-Will I be able to return to a full time job and place my child in a daycare/dayhome setting?
-Will our family still get to go on family vacations?
-If you have other children in your family who don't have CF, how has CF affected their lives and relationship with the child that does have CF?
-Is there such thing as home care nurses for children with CF?
-What types of activities can the child with CF not take part in?
-What types of outside support should I begin to put in place for a child that does have CF?
-Have any of the children in the family that don't have CF been to couselling to deal with feelings or questions they may have about the other child?
-After finding out that you were positively carrying a child with CF, how did you deal with it? (I am not coping too well at the possibility let alone a for sure outcome)
-What led to initial testing for CF in your child (especially if you found out in utero)? Ex. light spots etc.
-Was there any family history that you knew of for CF?


As well, absolutely any insight on how life will be affected with a CF child would be unbelievably appreciated. This is a very tough time for my husband and I, as well as my parents who had no idea that either of them could be a carrier as this is the first time CF has ever been a possible issue in our family. My husband and I discussed, prior to becoming pregnant, that we were just not able to deal with a child with severe handicaps, now it seems as though we have no choice. Genetic screening prior to pregnancy is not an option where we are so I did the triple screen as soon as I could and that came back with an extememly low result 1:50,000 of having a child with a genetic problem, we were elated (even though we had already suspected it would come back showing a very low chance), however a triple screen does not test for CF. While I have heard of CF I had absolutely no idea what it was. I'm slowly trying to educate myself, I have a good base as to what it is but I need to know how this will affect our daily lives. I also understand that CF is different for everyone and every family but any insight is better than nothing.

Thank you for your patience and any feed back
Jessie

 

[JellyBean3]

I'm sorry for sounding so ignorant, I'm extremely uneducated about Cystic Fibrosis and need some insight into a family life where one or more children have Cystic Fibrosis. I am currently 24+ weeks pregnant and the doctors are looking at CF as a cause for light spots on the babys' heart and small bowels. Also, I have just recieved my test results that show that I am in fact a Carrier of CF and as for my husband we will not find out if he is a carrier until after he comes back from his business trip around Dec 20. Therefore it is not confirmed that my unborn child has CF but I was told I have a 60% chance that the baby does. While I am trying to hold onto my last hope (my husband being neg.) I also want to find out how this will effect our lives. I have 1 son who is 6 years old and is extremely excited about having a little sister, CF has not played a roll in our lives until about a 1.5 weeks ago. Here are some questions I do have...

-Will I be able to return to a full time job and place my child in a daycare/dayhome setting?
-Will our family still get to go on family vacations?
-If you have other children in your family who don't have CF, how has CF affected their lives and relationship with the child that does have CF?
-Is there such thing as home care nurses for children with CF?
-What types of activities can the child with CF not take part in?
-What types of outside support should I begin to put in place for a child that does have CF?
-Have any of the children in the family that don't have CF been to couselling to deal with feelings or questions they may have about the other child?
-After finding out that you were positively carrying a child with CF, how did you deal with it? (I am not coping too well at the possibility let alone a for sure outcome)
-What led to initial testing for CF in your child (especially if you found out in utero)? Ex. light spots etc.
-Was there any family history that you knew of for CF?


As well, absolutely any insight on how life will be affected with a CF child would be unbelievably appreciated. This is a very tough time for my husband and I, as well as my parents who had no idea that either of them could be a carrier as this is the first time CF has ever been a possible issue in our family. My husband and I discussed, prior to becoming pregnant, that we were just not able to deal with a child with severe handicaps, now it seems as though we have no choice. Genetic screening prior to pregnancy is not an option where we are so I did the triple screen as soon as I could and that came back with an extememly low result 1:50,000 of having a child with a genetic problem, we were elated (even though we had already suspected it would come back showing a very low chance), however a triple screen does not test for CF. While I have heard of CF I had absolutely no idea what it was. I'm slowly trying to educate myself, I have a good base as to what it is but I need to know how this will affect our daily lives. I also understand that CF is different for everyone and every family but any insight is better than nothing.

Thank you for your patience and any feed back
Jessie

 

[JellyBean3]

I'm sorry for sounding so ignorant, I'm extremely uneducated about Cystic Fibrosis and need some insight into a family life where one or more children have Cystic Fibrosis. I am currently 24+ weeks pregnant and the doctors are looking at CF as a cause for light spots on the babys' heart and small bowels. Also, I have just recieved my test results that show that I am in fact a Carrier of CF and as for my husband we will not find out if he is a carrier until after he comes back from his business trip around Dec 20. Therefore it is not confirmed that my unborn child has CF but I was told I have a 60% chance that the baby does. While I am trying to hold onto my last hope (my husband being neg.) I also want to find out how this will effect our lives. I have 1 son who is 6 years old and is extremely excited about having a little sister, CF has not played a roll in our lives until about a 1.5 weeks ago. Here are some questions I do have...

-Will I be able to return to a full time job and place my child in a daycare/dayhome setting?
-Will our family still get to go on family vacations?
-If you have other children in your family who don't have CF, how has CF affected their lives and relationship with the child that does have CF?
-Is there such thing as home care nurses for children with CF?
-What types of activities can the child with CF not take part in?
-What types of outside support should I begin to put in place for a child that does have CF?
-Have any of the children in the family that don't have CF been to couselling to deal with feelings or questions they may have about the other child?
-After finding out that you were positively carrying a child with CF, how did you deal with it? (I am not coping too well at the possibility let alone a for sure outcome)
-What led to initial testing for CF in your child (especially if you found out in utero)? Ex. light spots etc.
-Was there any family history that you knew of for CF?


As well, absolutely any insight on how life will be affected with a CF child would be unbelievably appreciated. This is a very tough time for my husband and I, as well as my parents who had no idea that either of them could be a carrier as this is the first time CF has ever been a possible issue in our family. My husband and I discussed, prior to becoming pregnant, that we were just not able to deal with a child with severe handicaps, now it seems as though we have no choice. Genetic screening prior to pregnancy is not an option where we are so I did the triple screen as soon as I could and that came back with an extememly low result 1:50,000 of having a child with a genetic problem, we were elated (even though we had already suspected it would come back showing a very low chance), however a triple screen does not test for CF. While I have heard of CF I had absolutely no idea what it was. I'm slowly trying to educate myself, I have a good base as to what it is but I need to know how this will affect our daily lives. I also understand that CF is different for everyone and every family but any insight is better than nothing.

Thank you for your patience and any feed back
Jessie

 

[Rebjane]

Jessie,

First off, welcome, I am so sorry you and you're family have to go through all of this. You are not alone. I was in a similar situation 5 years ago when I was pregnant with my daughter. Others on this site have had similar experiences as well. You are right, in that every situation is unique.

I'll try to answer some of your questions: Yes a child with CF can go to daycare some on this site have their CF child in daycare, the staff needs to be educated well on CF and infection control, however. As a personal choice, both my children have not gone to daycare. My daughter with CF goes to nursery school. SHe also goes to swimming, dance class, playgroups, birthday partys, pretty much whatever a child without CF at 5 years old would do(except go in a hottub)


Life with CF is not easy, I won't lie, but it's not the worst thing that can happen; believe it or not. We are so lucky these days to have made great advancements in CF research and treatment. There is reason to be hopeful. Please be careful about reading up on CF, some information is VERY OUTDATED. The Cystic Fibrosis Foundation at www.cff.org has reliable information about CF.

I have an older son without CF; I had him sweat tested just to make sure.

In order to have CF both parents need to be carriers of the CF mutation. Once both parents are carriers with each child there is a 25% that child will have CF.


My daughter with CF was prenatally diagnosed when I was 23 weeks pregnant with her. She had an echogenic bowel and a light spot on her heart on ultrasound. THis prompted carrier testing on my husband and I and a subsequent amnio which confirmed the 2 CF mutations in my daughter. It was an unbelievably difficult time. Please feel free to add any questions I did not answer.

I found that I coped better once I found out for sure my daughter did in fact have CF. Could your husband be tested any sooner, for your own sanity?

I hope I didn't overload you with too much information. Remember to try to take care of yourself.

 

[Rebjane]

Jessie,

First off, welcome, I am so sorry you and you're family have to go through all of this. You are not alone. I was in a similar situation 5 years ago when I was pregnant with my daughter. Others on this site have had similar experiences as well. You are right, in that every situation is unique.

I'll try to answer some of your questions: Yes a child with CF can go to daycare some on this site have their CF child in daycare, the staff needs to be educated well on CF and infection control, however. As a personal choice, both my children have not gone to daycare. My daughter with CF goes to nursery school. SHe also goes to swimming, dance class, playgroups, birthday partys, pretty much whatever a child without CF at 5 years old would do(except go in a hottub)


Life with CF is not easy, I won't lie, but it's not the worst thing that can happen; believe it or not. We are so lucky these days to have made great advancements in CF research and treatment. There is reason to be hopeful. Please be careful about reading up on CF, some information is VERY OUTDATED. The Cystic Fibrosis Foundation at www.cff.org has reliable information about CF.

I have an older son without CF; I had him sweat tested just to make sure.

In order to have CF both parents need to be carriers of the CF mutation. Once both parents are carriers with each child there is a 25% that child will have CF.


My daughter with CF was prenatally diagnosed when I was 23 weeks pregnant with her. She had an echogenic bowel and a light spot on her heart on ultrasound. THis prompted carrier testing on my husband and I and a subsequent amnio which confirmed the 2 CF mutations in my daughter. It was an unbelievably difficult time. Please feel free to add any questions I did not answer.

I found that I coped better once I found out for sure my daughter did in fact have CF. Could your husband be tested any sooner, for your own sanity?

I hope I didn't overload you with too much information. Remember to try to take care of yourself.

 

[Rebjane]

Jessie,

First off, welcome, I am so sorry you and you're family have to go through all of this. You are not alone. I was in a similar situation 5 years ago when I was pregnant with my daughter. Others on this site have had similar experiences as well. You are right, in that every situation is unique.

I'll try to answer some of your questions: Yes a child with CF can go to daycare some on this site have their CF child in daycare, the staff needs to be educated well on CF and infection control, however. As a personal choice, both my children have not gone to daycare. My daughter with CF goes to nursery school. SHe also goes to swimming, dance class, playgroups, birthday partys, pretty much whatever a child without CF at 5 years old would do(except go in a hottub)


Life with CF is not easy, I won't lie, but it's not the worst thing that can happen; believe it or not. We are so lucky these days to have made great advancements in CF research and treatment. There is reason to be hopeful. Please be careful about reading up on CF, some information is VERY OUTDATED. The Cystic Fibrosis Foundation at www.cff.org has reliable information about CF.

I have an older son without CF; I had him sweat tested just to make sure.

In order to have CF both parents need to be carriers of the CF mutation. Once both parents are carriers with each child there is a 25% that child will have CF.


My daughter with CF was prenatally diagnosed when I was 23 weeks pregnant with her. She had an echogenic bowel and a light spot on her heart on ultrasound. THis prompted carrier testing on my husband and I and a subsequent amnio which confirmed the 2 CF mutations in my daughter. It was an unbelievably difficult time. Please feel free to add any questions I did not answer.

I found that I coped better once I found out for sure my daughter did in fact have CF. Could your husband be tested any sooner, for your own sanity?

I hope I didn't overload you with too much information. Remember to try to take care of yourself.

 

[Rebjane]

Jessie,

First off, welcome, I am so sorry you and you're family have to go through all of this. You are not alone. I was in a similar situation 5 years ago when I was pregnant with my daughter. Others on this site have had similar experiences as well. You are right, in that every situation is unique.

I'll try to answer some of your questions: Yes a child with CF can go to daycare some on this site have their CF child in daycare, the staff needs to be educated well on CF and infection control, however. As a personal choice, both my children have not gone to daycare. My daughter with CF goes to nursery school. SHe also goes to swimming, dance class, playgroups, birthday partys, pretty much whatever a child without CF at 5 years old would do(except go in a hottub)


Life with CF is not easy, I won't lie, but it's not the worst thing that can happen; believe it or not. We are so lucky these days to have made great advancements in CF research and treatment. There is reason to be hopeful. Please be careful about reading up on CF, some information is VERY OUTDATED. The Cystic Fibrosis Foundation at www.cff.org has reliable information about CF.

I have an older son without CF; I had him sweat tested just to make sure.

In order to have CF both parents need to be carriers of the CF mutation. Once both parents are carriers with each child there is a 25% that child will have CF.


My daughter with CF was prenatally diagnosed when I was 23 weeks pregnant with her. She had an echogenic bowel and a light spot on her heart on ultrasound. THis prompted carrier testing on my husband and I and a subsequent amnio which confirmed the 2 CF mutations in my daughter. It was an unbelievably difficult time. Please feel free to add any questions I did not answer.

I found that I coped better once I found out for sure my daughter did in fact have CF. Could your husband be tested any sooner, for your own sanity?

I hope I didn't overload you with too much information. Remember to try to take care of yourself.

 

[Rebjane]

Jessie,

First off, welcome, I am so sorry you and you're family have to go through all of this. You are not alone. I was in a similar situation 5 years ago when I was pregnant with my daughter. Others on this site have had similar experiences as well. You are right, in that every situation is unique.

I'll try to answer some of your questions: Yes a child with CF can go to daycare some on this site have their CF child in daycare, the staff needs to be educated well on CF and infection control, however. As a personal choice, both my children have not gone to daycare. My daughter with CF goes to nursery school. SHe also goes to swimming, dance class, playgroups, birthday partys, pretty much whatever a child without CF at 5 years old would do(except go in a hottub)


Life with CF is not easy, I won't lie, but it's not the worst thing that can happen; believe it or not. We are so lucky these days to have made great advancements in CF research and treatment. There is reason to be hopeful. Please be careful about reading up on CF, some information is VERY OUTDATED. The Cystic Fibrosis Foundation at www.cff.org has reliable information about CF.

I have an older son without CF; I had him sweat tested just to make sure.

In order to have CF both parents need to be carriers of the CF mutation. Once both parents are carriers with each child there is a 25% that child will have CF.


My daughter with CF was prenatally diagnosed when I was 23 weeks pregnant with her. She had an echogenic bowel and a light spot on her heart on ultrasound. THis prompted carrier testing on my husband and I and a subsequent amnio which confirmed the 2 CF mutations in my daughter. It was an unbelievably difficult time. Please feel free to add any questions I did not answer.

I found that I coped better once I found out for sure my daughter did in fact have CF. Could your husband be tested any sooner, for your own sanity?

I hope I didn't overload you with too much information. Remember to try to take care of yourself.

 

[TonyaH]

Hi Jesse, and Welcome,

You have many questions right now, as we all did in the beginning. Let me start by saying that you have found an incredible resource here on this site. I will touch on a few of the questions you asked, and you will also hear from many others who are so helpful.

There are some mothers here who knew during their pregnancy that their baby would have CF. My son was 2 mos. old when he was diagnosed, so I can't offer experience there. I have also been home with my children, but I know many mothers who have the CF children in daycare and they do just fine.

What I am learning this week is that CF can be a bit of a rollercoaster. This is definitely a disease that you have to stay on top of with treatments and therapies, but the trick is to not let your CF schedule define your lives. Soccer games, talent shows, and yes, even family vacations will be a part of your lives.

You will also learn that it is very difficult to predict the 'severity' of an individual's CF. Neither gene mutations nor sweat test results can predict what path this disease will take. But, we are lucky to have options in treatment today that weren't available years ago.

Try to take a deep breath and remember that nobody expects you to absorb everything in one day. CF 101 would be a very difficult class to teach in a day! And also know that we are always here for support! Good luck to your family.

 

[TonyaH]

Hi Jesse, and Welcome,

You have many questions right now, as we all did in the beginning. Let me start by saying that you have found an incredible resource here on this site. I will touch on a few of the questions you asked, and you will also hear from many others who are so helpful.

There are some mothers here who knew during their pregnancy that their baby would have CF. My son was 2 mos. old when he was diagnosed, so I can't offer experience there. I have also been home with my children, but I know many mothers who have the CF children in daycare and they do just fine.

What I am learning this week is that CF can be a bit of a rollercoaster. This is definitely a disease that you have to stay on top of with treatments and therapies, but the trick is to not let your CF schedule define your lives. Soccer games, talent shows, and yes, even family vacations will be a part of your lives.

You will also learn that it is very difficult to predict the 'severity' of an individual's CF. Neither gene mutations nor sweat test results can predict what path this disease will take. But, we are lucky to have options in treatment today that weren't available years ago.

Try to take a deep breath and remember that nobody expects you to absorb everything in one day. CF 101 would be a very difficult class to teach in a day! And also know that we are always here for support! Good luck to your family.

 

[TonyaH]

Hi Jesse, and Welcome,

You have many questions right now, as we all did in the beginning. Let me start by saying that you have found an incredible resource here on this site. I will touch on a few of the questions you asked, and you will also hear from many others who are so helpful.

There are some mothers here who knew during their pregnancy that their baby would have CF. My son was 2 mos. old when he was diagnosed, so I can't offer experience there. I have also been home with my children, but I know many mothers who have the CF children in daycare and they do just fine.

What I am learning this week is that CF can be a bit of a rollercoaster. This is definitely a disease that you have to stay on top of with treatments and therapies, but the trick is to not let your CF schedule define your lives. Soccer games, talent shows, and yes, even family vacations will be a part of your lives.

You will also learn that it is very difficult to predict the 'severity' of an individual's CF. Neither gene mutations nor sweat test results can predict what path this disease will take. But, we are lucky to have options in treatment today that weren't available years ago.

Try to take a deep breath and remember that nobody expects you to absorb everything in one day. CF 101 would be a very difficult class to teach in a day! And also know that we are always here for support! Good luck to your family.

 

[TonyaH]

Hi Jesse, and Welcome,

You have many questions right now, as we all did in the beginning. Let me start by saying that you have found an incredible resource here on this site. I will touch on a few of the questions you asked, and you will also hear from many others who are so helpful.

There are some mothers here who knew during their pregnancy that their baby would have CF. My son was 2 mos. old when he was diagnosed, so I can't offer experience there. I have also been home with my children, but I know many mothers who have the CF children in daycare and they do just fine.

What I am learning this week is that CF can be a bit of a rollercoaster. This is definitely a disease that you have to stay on top of with treatments and therapies, but the trick is to not let your CF schedule define your lives. Soccer games, talent shows, and yes, even family vacations will be a part of your lives.

You will also learn that it is very difficult to predict the 'severity' of an individual's CF. Neither gene mutations nor sweat test results can predict what path this disease will take. But, we are lucky to have options in treatment today that weren't available years ago.

Try to take a deep breath and remember that nobody expects you to absorb everything in one day. CF 101 would be a very difficult class to teach in a day! And also know that we are always here for support! Good luck to your family.

 

[TonyaH]

Hi Jesse, and Welcome,

You have many questions right now, as we all did in the beginning. Let me start by saying that you have found an incredible resource here on this site. I will touch on a few of the questions you asked, and you will also hear from many others who are so helpful.

There are some mothers here who knew during their pregnancy that their baby would have CF. My son was 2 mos. old when he was diagnosed, so I can't offer experience there. I have also been home with my children, but I know many mothers who have the CF children in daycare and they do just fine.

What I am learning this week is that CF can be a bit of a rollercoaster. This is definitely a disease that you have to stay on top of with treatments and therapies, but the trick is to not let your CF schedule define your lives. Soccer games, talent shows, and yes, even family vacations will be a part of your lives.

You will also learn that it is very difficult to predict the 'severity' of an individual's CF. Neither gene mutations nor sweat test results can predict what path this disease will take. But, we are lucky to have options in treatment today that weren't available years ago.

Try to take a deep breath and remember that nobody expects you to absorb everything in one day. CF 101 would be a very difficult class to teach in a day! And also know that we are always here for support! Good luck to your family.

 

[Mommafirst]

Hi Jessie. Welcome. I know you are overwhelmed, we've all been there. I'm wondering where your doctor came up with the 60% chance based on the echogenic bowel, heart and your carrier status? It doesn't really matter, because in reality either your precious girl will or will not have CF, how's that for covering all bases.

Life with CF is frustrating and sad some days. But as others already said, its not the worst thing. Most days I'm more upset over what might happen, vs. what is currently happening. My 22 month old daughter is doing very well, and other than all the meds and daily treatments we do to preserve that health, our life is very normal. She looks normal. She's developing normally. And her brothers see her as their very normal little sister.

Let me try to answer your q's:

-Will I be able to return to a full time job and place my child in a daycare/dayhome setting? I work a full time job and have a sitter come to our house. But that is what I always did with my other kids too. Nothing has changed.



-Will our family still get to go on family vacations? Sure. You may have to pack more carefully to include medicines and airway clearance devices, but CF will not keep you from traveling. As long as you have good insurance, it shouldn't cut too deeply into your travel funds.


-If you have other children in your family who don't have CF, how has CF affected their lives and relationship with the child that does have CF? My oldest understands a little bit and it makes him sad that his sister has to deal with CF. It also is hard for my boys to know that my daughter can eat ice cream without finishing their dinner, something they can't do. But they understand. And my oldest wants to someday be a doctor and find a cure for CF -- so there are lots of good that comes from having a CF sibling. Including growing a compassion for others of all kinds.


-Is there such thing as home care nurses for children with CF? There are, but while we needed a home care nurse once a week while my daughter was on IV antibiotics, it was only for three weeks. We haven't needed it again.


-What types of activities can the child with CF not take part in? I can't think of any right now. Perhaps as they get older or the CF is more severe they will be limited if they can't breathe. The only no-no we've been told is the hot tub.


-What types of outside support should I begin to put in place for a child that does have CF? A local accredited CF center should be your starting point. Hopefully you have one relatively close and you can find out by finding a care network on cff.org.

-Have any of the children in the family that don't have CF been to couselling to deal with feelings or questions they may have about the other child? I've considered helping my son with this type of counseling, but he's doing really well right now and doesn't seem to need it. The CF social worker at our CF center said she'd do counseling with him if or when he needs it.


-After finding out that you were positively carrying a child with CF, how did you deal with it? (I am not coping too well at the possibility let alone a for sure outcome) I didn't know prenatally, but it was hard at first. Its hard to know and not reallyknow the child. My daughter was very young, just a few months old. It got easier as she got older and we were about to wrap our heads around what she was and that CF was just a small part of that.


-What led to initial testing for CF in your child (especially if you found out in utero)? Ex. light spots etc. My daughter was born with Meconium Plugs, but they never showed up as an echogenic bowel (bright spots) on the ultrasoudn.


-Was there any family history that you knew of for CF? Nope, no history

Good luck and welcome!!

 

[Mommafirst]

Hi Jessie. Welcome. I know you are overwhelmed, we've all been there. I'm wondering where your doctor came up with the 60% chance based on the echogenic bowel, heart and your carrier status? It doesn't really matter, because in reality either your precious girl will or will not have CF, how's that for covering all bases.

Life with CF is frustrating and sad some days. But as others already said, its not the worst thing. Most days I'm more upset over what might happen, vs. what is currently happening. My 22 month old daughter is doing very well, and other than all the meds and daily treatments we do to preserve that health, our life is very normal. She looks normal. She's developing normally. And her brothers see her as their very normal little sister.

Let me try to answer your q's:

-Will I be able to return to a full time job and place my child in a daycare/dayhome setting? I work a full time job and have a sitter come to our house. But that is what I always did with my other kids too. Nothing has changed.



-Will our family still get to go on family vacations? Sure. You may have to pack more carefully to include medicines and airway clearance devices, but CF will not keep you from traveling. As long as you have good insurance, it shouldn't cut too deeply into your travel funds.


-If you have other children in your family who don't have CF, how has CF affected their lives and relationship with the child that does have CF? My oldest understands a little bit and it makes him sad that his sister has to deal with CF. It also is hard for my boys to know that my daughter can eat ice cream without finishing their dinner, something they can't do. But they understand. And my oldest wants to someday be a doctor and find a cure for CF -- so there are lots of good that comes from having a CF sibling. Including growing a compassion for others of all kinds.


-Is there such thing as home care nurses for children with CF? There are, but while we needed a home care nurse once a week while my daughter was on IV antibiotics, it was only for three weeks. We haven't needed it again.


-What types of activities can the child with CF not take part in? I can't think of any right now. Perhaps as they get older or the CF is more severe they will be limited if they can't breathe. The only no-no we've been told is the hot tub.


-What types of outside support should I begin to put in place for a child that does have CF? A local accredited CF center should be your starting point. Hopefully you have one relatively close and you can find out by finding a care network on cff.org.

-Have any of the children in the family that don't have CF been to couselling to deal with feelings or questions they may have about the other child? I've considered helping my son with this type of counseling, but he's doing really well right now and doesn't seem to need it. The CF social worker at our CF center said she'd do counseling with him if or when he needs it.


-After finding out that you were positively carrying a child with CF, how did you deal with it? (I am not coping too well at the possibility let alone a for sure outcome) I didn't know prenatally, but it was hard at first. Its hard to know and not reallyknow the child. My daughter was very young, just a few months old. It got easier as she got older and we were about to wrap our heads around what she was and that CF was just a small part of that.


-What led to initial testing for CF in your child (especially if you found out in utero)? Ex. light spots etc. My daughter was born with Meconium Plugs, but they never showed up as an echogenic bowel (bright spots) on the ultrasoudn.


-Was there any family history that you knew of for CF? Nope, no history

Good luck and welcome!!

 

[Mommafirst]

Hi Jessie. Welcome. I know you are overwhelmed, we've all been there. I'm wondering where your doctor came up with the 60% chance based on the echogenic bowel, heart and your carrier status? It doesn't really matter, because in reality either your precious girl will or will not have CF, how's that for covering all bases.

Life with CF is frustrating and sad some days. But as others already said, its not the worst thing. Most days I'm more upset over what might happen, vs. what is currently happening. My 22 month old daughter is doing very well, and other than all the meds and daily treatments we do to preserve that health, our life is very normal. She looks normal. She's developing normally. And her brothers see her as their very normal little sister.

Let me try to answer your q's:

-Will I be able to return to a full time job and place my child in a daycare/dayhome setting? I work a full time job and have a sitter come to our house. But that is what I always did with my other kids too. Nothing has changed.



-Will our family still get to go on family vacations? Sure. You may have to pack more carefully to include medicines and airway clearance devices, but CF will not keep you from traveling. As long as you have good insurance, it shouldn't cut too deeply into your travel funds.


-If you have other children in your family who don't have CF, how has CF affected their lives and relationship with the child that does have CF? My oldest understands a little bit and it makes him sad that his sister has to deal with CF. It also is hard for my boys to know that my daughter can eat ice cream without finishing their dinner, something they can't do. But they understand. And my oldest wants to someday be a doctor and find a cure for CF -- so there are lots of good that comes from having a CF sibling. Including growing a compassion for others of all kinds.


-Is there such thing as home care nurses for children with CF? There are, but while we needed a home care nurse once a week while my daughter was on IV antibiotics, it was only for three weeks. We haven't needed it again.


-What types of activities can the child with CF not take part in? I can't think of any right now. Perhaps as they get older or the CF is more severe they will be limited if they can't breathe. The only no-no we've been told is the hot tub.


-What types of outside support should I begin to put in place for a child that does have CF? A local accredited CF center should be your starting point. Hopefully you have one relatively close and you can find out by finding a care network on cff.org.

-Have any of the children in the family that don't have CF been to couselling to deal with feelings or questions they may have about the other child? I've considered helping my son with this type of counseling, but he's doing really well right now and doesn't seem to need it. The CF social worker at our CF center said she'd do counseling with him if or when he needs it.


-After finding out that you were positively carrying a child with CF, how did you deal with it? (I am not coping too well at the possibility let alone a for sure outcome) I didn't know prenatally, but it was hard at first. Its hard to know and not reallyknow the child. My daughter was very young, just a few months old. It got easier as she got older and we were about to wrap our heads around what she was and that CF was just a small part of that.


-What led to initial testing for CF in your child (especially if you found out in utero)? Ex. light spots etc. My daughter was born with Meconium Plugs, but they never showed up as an echogenic bowel (bright spots) on the ultrasoudn.


-Was there any family history that you knew of for CF? Nope, no history

Good luck and welcome!!

 

[Mommafirst]

Hi Jessie. Welcome. I know you are overwhelmed, we've all been there. I'm wondering where your doctor came up with the 60% chance based on the echogenic bowel, heart and your carrier status? It doesn't really matter, because in reality either your precious girl will or will not have CF, how's that for covering all bases.

Life with CF is frustrating and sad some days. But as others already said, its not the worst thing. Most days I'm more upset over what might happen, vs. what is currently happening. My 22 month old daughter is doing very well, and other than all the meds and daily treatments we do to preserve that health, our life is very normal. She looks normal. She's developing normally. And her brothers see her as their very normal little sister.

Let me try to answer your q's:

-Will I be able to return to a full time job and place my child in a daycare/dayhome setting? I work a full time job and have a sitter come to our house. But that is what I always did with my other kids too. Nothing has changed.



-Will our family still get to go on family vacations? Sure. You may have to pack more carefully to include medicines and airway clearance devices, but CF will not keep you from traveling. As long as you have good insurance, it shouldn't cut too deeply into your travel funds.


-If you have other children in your family who don't have CF, how has CF affected their lives and relationship with the child that does have CF? My oldest understands a little bit and it makes him sad that his sister has to deal with CF. It also is hard for my boys to know that my daughter can eat ice cream without finishing their dinner, something they can't do. But they understand. And my oldest wants to someday be a doctor and find a cure for CF -- so there are lots of good that comes from having a CF sibling. Including growing a compassion for others of all kinds.


-Is there such thing as home care nurses for children with CF? There are, but while we needed a home care nurse once a week while my daughter was on IV antibiotics, it was only for three weeks. We haven't needed it again.


-What types of activities can the child with CF not take part in? I can't think of any right now. Perhaps as they get older or the CF is more severe they will be limited if they can't breathe. The only no-no we've been told is the hot tub.


-What types of outside support should I begin to put in place for a child that does have CF? A local accredited CF center should be your starting point. Hopefully you have one relatively close and you can find out by finding a care network on cff.org.

-Have any of the children in the family that don't have CF been to couselling to deal with feelings or questions they may have about the other child? I've considered helping my son with this type of counseling, but he's doing really well right now and doesn't seem to need it. The CF social worker at our CF center said she'd do counseling with him if or when he needs it.


-After finding out that you were positively carrying a child with CF, how did you deal with it? (I am not coping too well at the possibility let alone a for sure outcome) I didn't know prenatally, but it was hard at first. Its hard to know and not reallyknow the child. My daughter was very young, just a few months old. It got easier as she got older and we were about to wrap our heads around what she was and that CF was just a small part of that.


-What led to initial testing for CF in your child (especially if you found out in utero)? Ex. light spots etc. My daughter was born with Meconium Plugs, but they never showed up as an echogenic bowel (bright spots) on the ultrasoudn.


-Was there any family history that you knew of for CF? Nope, no history

Good luck and welcome!!

 

[Mommafirst]

Hi Jessie. Welcome. I know you are overwhelmed, we've all been there. I'm wondering where your doctor came up with the 60% chance based on the echogenic bowel, heart and your carrier status? It doesn't really matter, because in reality either your precious girl will or will not have CF, how's that for covering all bases.

Life with CF is frustrating and sad some days. But as others already said, its not the worst thing. Most days I'm more upset over what might happen, vs. what is currently happening. My 22 month old daughter is doing very well, and other than all the meds and daily treatments we do to preserve that health, our life is very normal. She looks normal. She's developing normally. And her brothers see her as their very normal little sister.

Let me try to answer your q's:

-Will I be able to return to a full time job and place my child in a daycare/dayhome setting? I work a full time job and have a sitter come to our house. But that is what I always did with my other kids too. Nothing has changed.



-Will our family still get to go on family vacations? Sure. You may have to pack more carefully to include medicines and airway clearance devices, but CF will not keep you from traveling. As long as you have good insurance, it shouldn't cut too deeply into your travel funds.


-If you have other children in your family who don't have CF, how has CF affected their lives and relationship with the child that does have CF? My oldest understands a little bit and it makes him sad that his sister has to deal with CF. It also is hard for my boys to know that my daughter can eat ice cream without finishing their dinner, something they can't do. But they understand. And my oldest wants to someday be a doctor and find a cure for CF -- so there are lots of good that comes from having a CF sibling. Including growing a compassion for others of all kinds.


-Is there such thing as home care nurses for children with CF? There are, but while we needed a home care nurse once a week while my daughter was on IV antibiotics, it was only for three weeks. We haven't needed it again.


-What types of activities can the child with CF not take part in? I can't think of any right now. Perhaps as they get older or the CF is more severe they will be limited if they can't breathe. The only no-no we've been told is the hot tub.


-What types of outside support should I begin to put in place for a child that does have CF? A local accredited CF center should be your starting point. Hopefully you have one relatively close and you can find out by finding a care network on cff.org.

-Have any of the children in the family that don't have CF been to couselling to deal with feelings or questions they may have about the other child? I've considered helping my son with this type of counseling, but he's doing really well right now and doesn't seem to need it. The CF social worker at our CF center said she'd do counseling with him if or when he needs it.


-After finding out that you were positively carrying a child with CF, how did you deal with it? (I am not coping too well at the possibility let alone a for sure outcome) I didn't know prenatally, but it was hard at first. Its hard to know and not reallyknow the child. My daughter was very young, just a few months old. It got easier as she got older and we were about to wrap our heads around what she was and that CF was just a small part of that.


-What led to initial testing for CF in your child (especially if you found out in utero)? Ex. light spots etc. My daughter was born with Meconium Plugs, but they never showed up as an echogenic bowel (bright spots) on the ultrasoudn.


-Was there any family history that you knew of for CF? Nope, no history

Good luck and welcome!!