New to all this

[izemmom]

Hi and Welcome! I saw your post earlier couldn't respond right then. Now, all the previous posters stole my answers!!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

The answer to "Does LIfe Go on??" Is a resounding YES!!!! OUr little CF'er has enriched our lives in unimaginable ways. IF your little one does indeed have cf, it will take some time to adjust. There will be bad days, weeks, months, but, mostly, life will be good. You'll find a new normal, and you'll live. We have found more joy in just beign a family than we used to. We make sure to do things together and appreciate the small things. Life is not the same as it was before cf, but it is just as good!

By the way, my daughter does go to daycare. It is the same small center than our older daughter attended starting at 6 weeks old. They have been wonderful. Emily is actually sick (with normal colds and stuff) less often than her sister was at that age becasue they are SO careful to keep the kids in her class separated if they are sick. It can b e done, but like Heather said, I did have to educate the staff. THey love my girls so much that they have been happy to do what e ver we need.

I work full time (teacher) and so far this school year I have only missed for scheduled dr. appointments and clinic visits. There are times I wish I didn't work so that I could be home with Emily, but most of the time, I am glad that I have a job to go to - even if it's just to focus on something else for a while.

As I said, you got great responses from everyone above. Stick around the site- - it is a wonderful place. Let us know if you need anything!

 

[izemmom]

Hi and Welcome! I saw your post earlier couldn't respond right then. Now, all the previous posters stole my answers!!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

The answer to "Does LIfe Go on??" Is a resounding YES!!!! OUr little CF'er has enriched our lives in unimaginable ways. IF your little one does indeed have cf, it will take some time to adjust. There will be bad days, weeks, months, but, mostly, life will be good. You'll find a new normal, and you'll live. We have found more joy in just beign a family than we used to. We make sure to do things together and appreciate the small things. Life is not the same as it was before cf, but it is just as good!

By the way, my daughter does go to daycare. It is the same small center than our older daughter attended starting at 6 weeks old. They have been wonderful. Emily is actually sick (with normal colds and stuff) less often than her sister was at that age becasue they are SO careful to keep the kids in her class separated if they are sick. It can b e done, but like Heather said, I did have to educate the staff. THey love my girls so much that they have been happy to do what e ver we need.

I work full time (teacher) and so far this school year I have only missed for scheduled dr. appointments and clinic visits. There are times I wish I didn't work so that I could be home with Emily, but most of the time, I am glad that I have a job to go to - even if it's just to focus on something else for a while.

As I said, you got great responses from everyone above. Stick around the site- - it is a wonderful place. Let us know if you need anything!

 

[izemmom]

Hi and Welcome! I saw your post earlier couldn't respond right then. Now, all the previous posters stole my answers!!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

The answer to "Does LIfe Go on??" Is a resounding YES!!!! OUr little CF'er has enriched our lives in unimaginable ways. IF your little one does indeed have cf, it will take some time to adjust. There will be bad days, weeks, months, but, mostly, life will be good. You'll find a new normal, and you'll live. We have found more joy in just beign a family than we used to. We make sure to do things together and appreciate the small things. Life is not the same as it was before cf, but it is just as good!

By the way, my daughter does go to daycare. It is the same small center than our older daughter attended starting at 6 weeks old. They have been wonderful. Emily is actually sick (with normal colds and stuff) less often than her sister was at that age becasue they are SO careful to keep the kids in her class separated if they are sick. It can b e done, but like Heather said, I did have to educate the staff. THey love my girls so much that they have been happy to do what e ver we need.

I work full time (teacher) and so far this school year I have only missed for scheduled dr. appointments and clinic visits. There are times I wish I didn't work so that I could be home with Emily, but most of the time, I am glad that I have a job to go to - even if it's just to focus on something else for a while.

As I said, you got great responses from everyone above. Stick around the site- - it is a wonderful place. Let us know if you need anything!

 

[izemmom]

Hi and Welcome! I saw your post earlier couldn't respond right then. Now, all the previous posters stole my answers!!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

The answer to "Does LIfe Go on??" Is a resounding YES!!!! OUr little CF'er has enriched our lives in unimaginable ways. IF your little one does indeed have cf, it will take some time to adjust. There will be bad days, weeks, months, but, mostly, life will be good. You'll find a new normal, and you'll live. We have found more joy in just beign a family than we used to. We make sure to do things together and appreciate the small things. Life is not the same as it was before cf, but it is just as good!

By the way, my daughter does go to daycare. It is the same small center than our older daughter attended starting at 6 weeks old. They have been wonderful. Emily is actually sick (with normal colds and stuff) less often than her sister was at that age becasue they are SO careful to keep the kids in her class separated if they are sick. It can b e done, but like Heather said, I did have to educate the staff. THey love my girls so much that they have been happy to do what e ver we need.

I work full time (teacher) and so far this school year I have only missed for scheduled dr. appointments and clinic visits. There are times I wish I didn't work so that I could be home with Emily, but most of the time, I am glad that I have a job to go to - even if it's just to focus on something else for a while.

As I said, you got great responses from everyone above. Stick around the site- - it is a wonderful place. Let us know if you need anything!

 

[izemmom]

Hi and Welcome! I saw your post earlier couldn't respond right then. Now, all the previous posters stole my answers!!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

The answer to "Does LIfe Go on??" Is a resounding YES!!!! OUr little CF'er has enriched our lives in unimaginable ways. IF your little one does indeed have cf, it will take some time to adjust. There will be bad days, weeks, months, but, mostly, life will be good. You'll find a new normal, and you'll live. We have found more joy in just beign a family than we used to. We make sure to do things together and appreciate the small things. Life is not the same as it was before cf, but it is just as good!

By the way, my daughter does go to daycare. It is the same small center than our older daughter attended starting at 6 weeks old. They have been wonderful. Emily is actually sick (with normal colds and stuff) less often than her sister was at that age becasue they are SO careful to keep the kids in her class separated if they are sick. It can b e done, but like Heather said, I did have to educate the staff. THey love my girls so much that they have been happy to do what e ver we need.

I work full time (teacher) and so far this school year I have only missed for scheduled dr. appointments and clinic visits. There are times I wish I didn't work so that I could be home with Emily, but most of the time, I am glad that I have a job to go to - even if it's just to focus on something else for a while.

As I said, you got great responses from everyone above. Stick around the site- - it is a wonderful place. Let us know if you need anything!

 

[thefrogprincess]

Hi Jessie! I am Jessi (no e on the end) too! I can help with some of your questions I hope. I am 26 and have CF, I was diagnosed at birth because my older brother also has CF and was diagnosed before I was born.

I would say that unless your child were to have some pretty nasty complications that you returning to work should not be an issue. The baby would be exposed to a lot of germs in daycare, but so is any other kid. You may just want to be a little more careful during cold/flu season. And I would make sure that your daycare is obsessive about sanitizing everything.

As far as family vacations: YES! Go! Do whatever you want! CF can make a kid feel different enough without not being able to participate in "normal" stuff. This goes for activities too. I ran around like a nut case with my friends all summer, went to camp, played sports (which is actually one of the best things a CFer can do!), went to public school, went to birthday parties, you name it I did it as a kid!

We never used an in home nurse, I don't think that is necissary at all. CF kids do not need round the clock medical care (unless again, there were some nasty complications like an obstructed bowel at birth, but you would probably know about that before hand).

I wish you the best of luck! I hope you new little one doesn't have CF, but if she does you have found a wonderful community for information and support with us!

 

[thefrogprincess]

Hi Jessie! I am Jessi (no e on the end) too! I can help with some of your questions I hope. I am 26 and have CF, I was diagnosed at birth because my older brother also has CF and was diagnosed before I was born.

I would say that unless your child were to have some pretty nasty complications that you returning to work should not be an issue. The baby would be exposed to a lot of germs in daycare, but so is any other kid. You may just want to be a little more careful during cold/flu season. And I would make sure that your daycare is obsessive about sanitizing everything.

As far as family vacations: YES! Go! Do whatever you want! CF can make a kid feel different enough without not being able to participate in "normal" stuff. This goes for activities too. I ran around like a nut case with my friends all summer, went to camp, played sports (which is actually one of the best things a CFer can do!), went to public school, went to birthday parties, you name it I did it as a kid!

We never used an in home nurse, I don't think that is necissary at all. CF kids do not need round the clock medical care (unless again, there were some nasty complications like an obstructed bowel at birth, but you would probably know about that before hand).

I wish you the best of luck! I hope you new little one doesn't have CF, but if she does you have found a wonderful community for information and support with us!

 

[thefrogprincess]

Hi Jessie! I am Jessi (no e on the end) too! I can help with some of your questions I hope. I am 26 and have CF, I was diagnosed at birth because my older brother also has CF and was diagnosed before I was born.

I would say that unless your child were to have some pretty nasty complications that you returning to work should not be an issue. The baby would be exposed to a lot of germs in daycare, but so is any other kid. You may just want to be a little more careful during cold/flu season. And I would make sure that your daycare is obsessive about sanitizing everything.

As far as family vacations: YES! Go! Do whatever you want! CF can make a kid feel different enough without not being able to participate in "normal" stuff. This goes for activities too. I ran around like a nut case with my friends all summer, went to camp, played sports (which is actually one of the best things a CFer can do!), went to public school, went to birthday parties, you name it I did it as a kid!

We never used an in home nurse, I don't think that is necissary at all. CF kids do not need round the clock medical care (unless again, there were some nasty complications like an obstructed bowel at birth, but you would probably know about that before hand).

I wish you the best of luck! I hope you new little one doesn't have CF, but if she does you have found a wonderful community for information and support with us!

 

[thefrogprincess]

Hi Jessie! I am Jessi (no e on the end) too! I can help with some of your questions I hope. I am 26 and have CF, I was diagnosed at birth because my older brother also has CF and was diagnosed before I was born.

I would say that unless your child were to have some pretty nasty complications that you returning to work should not be an issue. The baby would be exposed to a lot of germs in daycare, but so is any other kid. You may just want to be a little more careful during cold/flu season. And I would make sure that your daycare is obsessive about sanitizing everything.

As far as family vacations: YES! Go! Do whatever you want! CF can make a kid feel different enough without not being able to participate in "normal" stuff. This goes for activities too. I ran around like a nut case with my friends all summer, went to camp, played sports (which is actually one of the best things a CFer can do!), went to public school, went to birthday parties, you name it I did it as a kid!

We never used an in home nurse, I don't think that is necissary at all. CF kids do not need round the clock medical care (unless again, there were some nasty complications like an obstructed bowel at birth, but you would probably know about that before hand).

I wish you the best of luck! I hope you new little one doesn't have CF, but if she does you have found a wonderful community for information and support with us!

 

[thefrogprincess]

Hi Jessie! I am Jessi (no e on the end) too! I can help with some of your questions I hope. I am 26 and have CF, I was diagnosed at birth because my older brother also has CF and was diagnosed before I was born.

I would say that unless your child were to have some pretty nasty complications that you returning to work should not be an issue. The baby would be exposed to a lot of germs in daycare, but so is any other kid. You may just want to be a little more careful during cold/flu season. And I would make sure that your daycare is obsessive about sanitizing everything.

As far as family vacations: YES! Go! Do whatever you want! CF can make a kid feel different enough without not being able to participate in "normal" stuff. This goes for activities too. I ran around like a nut case with my friends all summer, went to camp, played sports (which is actually one of the best things a CFer can do!), went to public school, went to birthday parties, you name it I did it as a kid!

We never used an in home nurse, I don't think that is necissary at all. CF kids do not need round the clock medical care (unless again, there were some nasty complications like an obstructed bowel at birth, but you would probably know about that before hand).

I wish you the best of luck! I hope you new little one doesn't have CF, but if she does you have found a wonderful community for information and support with us!

 

[ktsmom]

Welcome! You have received great answers and I hope you can see what a great community this is. People here care and understand.

I will provide my answers to a few of your questions:

Non-cf sibling: our older daughter has been an incredible source of kindness and help for her little sister. She knows the names of all her meds, how to do a "happy dance" to get her to cooperate with treatments. She is clearly in the dark about how severe CF can be and if she needs counseling when the realization hits we'll certainly pursue it. My husband and I sought some counseling when our daughter was diangosed in August of 2006 (because of GI and failure to thrive issues).

The grandparents and extended family: There is no known family history on either side. You might see some crazy behaviors from your family, including denial, telling you your child "doesn't look sick", that they'll grow out of it, must have come from your husband's side, etc.

We are fortunate, I feel, that my dad wanted to be carrier tested. He has extended family on his side and he felt it important to know. No one else has expressed any interest in being carrier tested. Ignorance is bliss, I suppose.

You may be in despair now, but I promise having a child with CF is ultimately a manageable situation and you will feel better. I still have my moments. So does our daughter. She has a treatment regimen that includes 5 to 7 breathing treaments a day, the vest twice a day, 10+ different meds (including the inhaled meds) a day. Despite it all we lead a fairly normal life: pre-kindergarten and after school care, dancing classes, just got back from a classmate's birthday party.

Please stick around and keep us posted on your situation. Best wishes to you and your family. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Welcome! You have received great answers and I hope you can see what a great community this is. People here care and understand.

I will provide my answers to a few of your questions:

Non-cf sibling: our older daughter has been an incredible source of kindness and help for her little sister. She knows the names of all her meds, how to do a "happy dance" to get her to cooperate with treatments. She is clearly in the dark about how severe CF can be and if she needs counseling when the realization hits we'll certainly pursue it. My husband and I sought some counseling when our daughter was diangosed in August of 2006 (because of GI and failure to thrive issues).

The grandparents and extended family: There is no known family history on either side. You might see some crazy behaviors from your family, including denial, telling you your child "doesn't look sick", that they'll grow out of it, must have come from your husband's side, etc.

We are fortunate, I feel, that my dad wanted to be carrier tested. He has extended family on his side and he felt it important to know. No one else has expressed any interest in being carrier tested. Ignorance is bliss, I suppose.

You may be in despair now, but I promise having a child with CF is ultimately a manageable situation and you will feel better. I still have my moments. So does our daughter. She has a treatment regimen that includes 5 to 7 breathing treaments a day, the vest twice a day, 10+ different meds (including the inhaled meds) a day. Despite it all we lead a fairly normal life: pre-kindergarten and after school care, dancing classes, just got back from a classmate's birthday party.

Please stick around and keep us posted on your situation. Best wishes to you and your family. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Welcome! You have received great answers and I hope you can see what a great community this is. People here care and understand.

I will provide my answers to a few of your questions:

Non-cf sibling: our older daughter has been an incredible source of kindness and help for her little sister. She knows the names of all her meds, how to do a "happy dance" to get her to cooperate with treatments. She is clearly in the dark about how severe CF can be and if she needs counseling when the realization hits we'll certainly pursue it. My husband and I sought some counseling when our daughter was diangosed in August of 2006 (because of GI and failure to thrive issues).

The grandparents and extended family: There is no known family history on either side. You might see some crazy behaviors from your family, including denial, telling you your child "doesn't look sick", that they'll grow out of it, must have come from your husband's side, etc.

We are fortunate, I feel, that my dad wanted to be carrier tested. He has extended family on his side and he felt it important to know. No one else has expressed any interest in being carrier tested. Ignorance is bliss, I suppose.

You may be in despair now, but I promise having a child with CF is ultimately a manageable situation and you will feel better. I still have my moments. So does our daughter. She has a treatment regimen that includes 5 to 7 breathing treaments a day, the vest twice a day, 10+ different meds (including the inhaled meds) a day. Despite it all we lead a fairly normal life: pre-kindergarten and after school care, dancing classes, just got back from a classmate's birthday party.

Please stick around and keep us posted on your situation. Best wishes to you and your family. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Welcome! You have received great answers and I hope you can see what a great community this is. People here care and understand.

I will provide my answers to a few of your questions:

Non-cf sibling: our older daughter has been an incredible source of kindness and help for her little sister. She knows the names of all her meds, how to do a "happy dance" to get her to cooperate with treatments. She is clearly in the dark about how severe CF can be and if she needs counseling when the realization hits we'll certainly pursue it. My husband and I sought some counseling when our daughter was diangosed in August of 2006 (because of GI and failure to thrive issues).

The grandparents and extended family: There is no known family history on either side. You might see some crazy behaviors from your family, including denial, telling you your child "doesn't look sick", that they'll grow out of it, must have come from your husband's side, etc.

We are fortunate, I feel, that my dad wanted to be carrier tested. He has extended family on his side and he felt it important to know. No one else has expressed any interest in being carrier tested. Ignorance is bliss, I suppose.

You may be in despair now, but I promise having a child with CF is ultimately a manageable situation and you will feel better. I still have my moments. So does our daughter. She has a treatment regimen that includes 5 to 7 breathing treaments a day, the vest twice a day, 10+ different meds (including the inhaled meds) a day. Despite it all we lead a fairly normal life: pre-kindergarten and after school care, dancing classes, just got back from a classmate's birthday party.

Please stick around and keep us posted on your situation. Best wishes to you and your family. <img src="i/expressions/heart.gif" border="0">

 

[ktsmom]

Welcome! You have received great answers and I hope you can see what a great community this is. People here care and understand.

I will provide my answers to a few of your questions:

Non-cf sibling: our older daughter has been an incredible source of kindness and help for her little sister. She knows the names of all her meds, how to do a "happy dance" to get her to cooperate with treatments. She is clearly in the dark about how severe CF can be and if she needs counseling when the realization hits we'll certainly pursue it. My husband and I sought some counseling when our daughter was diangosed in August of 2006 (because of GI and failure to thrive issues).

The grandparents and extended family: There is no known family history on either side. You might see some crazy behaviors from your family, including denial, telling you your child "doesn't look sick", that they'll grow out of it, must have come from your husband's side, etc.

We are fortunate, I feel, that my dad wanted to be carrier tested. He has extended family on his side and he felt it important to know. No one else has expressed any interest in being carrier tested. Ignorance is bliss, I suppose.

You may be in despair now, but I promise having a child with CF is ultimately a manageable situation and you will feel better. I still have my moments. So does our daughter. She has a treatment regimen that includes 5 to 7 breathing treaments a day, the vest twice a day, 10+ different meds (including the inhaled meds) a day. Despite it all we lead a fairly normal life: pre-kindergarten and after school care, dancing classes, just got back from a classmate's birthday party.

Please stick around and keep us posted on your situation. Best wishes to you and your family. <img src="i/expressions/heart.gif" border="0">

 

[SJCmoon]

Hello Jessie, I am 32 weeks pregnant with a son who has been genetically diagnosed with CF. DH & I knew we were carriers prior to this pregancy, so we had an amnio to find out for sure. Well at 20+ weeks we received the diagnosis.
While DH and I are still working with "wrapping our minds" around it, we're getting there.
My only advice is, to become educated. My doctors have been great at getting us consultation with the CF Team at out local care center as well as neonatology for "just in case". We have a 4 yr. old daughter who we're trying to prepare for he baby brother's condition as well.
Also, even though I don't post a whole lot, yet, I have learned a great deal from just visiting this site and reading other posts.
Good luck with the testing and remember it's okay to be scared, but not to lose sight of the most important part. . .your baby.

 

[SJCmoon]

Hello Jessie, I am 32 weeks pregnant with a son who has been genetically diagnosed with CF. DH & I knew we were carriers prior to this pregancy, so we had an amnio to find out for sure. Well at 20+ weeks we received the diagnosis.
While DH and I are still working with "wrapping our minds" around it, we're getting there.
My only advice is, to become educated. My doctors have been great at getting us consultation with the CF Team at out local care center as well as neonatology for "just in case". We have a 4 yr. old daughter who we're trying to prepare for he baby brother's condition as well.
Also, even though I don't post a whole lot, yet, I have learned a great deal from just visiting this site and reading other posts.
Good luck with the testing and remember it's okay to be scared, but not to lose sight of the most important part. . .your baby.

 

[SJCmoon]

Hello Jessie, I am 32 weeks pregnant with a son who has been genetically diagnosed with CF. DH & I knew we were carriers prior to this pregancy, so we had an amnio to find out for sure. Well at 20+ weeks we received the diagnosis.
While DH and I are still working with "wrapping our minds" around it, we're getting there.
My only advice is, to become educated. My doctors have been great at getting us consultation with the CF Team at out local care center as well as neonatology for "just in case". We have a 4 yr. old daughter who we're trying to prepare for he baby brother's condition as well.
Also, even though I don't post a whole lot, yet, I have learned a great deal from just visiting this site and reading other posts.
Good luck with the testing and remember it's okay to be scared, but not to lose sight of the most important part. . .your baby.

 

[SJCmoon]

Hello Jessie, I am 32 weeks pregnant with a son who has been genetically diagnosed with CF. DH & I knew we were carriers prior to this pregancy, so we had an amnio to find out for sure. Well at 20+ weeks we received the diagnosis.
While DH and I are still working with "wrapping our minds" around it, we're getting there.
My only advice is, to become educated. My doctors have been great at getting us consultation with the CF Team at out local care center as well as neonatology for "just in case". We have a 4 yr. old daughter who we're trying to prepare for he baby brother's condition as well.
Also, even though I don't post a whole lot, yet, I have learned a great deal from just visiting this site and reading other posts.
Good luck with the testing and remember it's okay to be scared, but not to lose sight of the most important part. . .your baby.

 

[SJCmoon]

Hello Jessie, I am 32 weeks pregnant with a son who has been genetically diagnosed with CF. DH & I knew we were carriers prior to this pregancy, so we had an amnio to find out for sure. Well at 20+ weeks we received the diagnosis.
While DH and I are still working with "wrapping our minds" around it, we're getting there.
My only advice is, to become educated. My doctors have been great at getting us consultation with the CF Team at out local care center as well as neonatology for "just in case". We have a 4 yr. old daughter who we're trying to prepare for he baby brother's condition as well.
Also, even though I don't post a whole lot, yet, I have learned a great deal from just visiting this site and reading other posts.
Good luck with the testing and remember it's okay to be scared, but not to lose sight of the most important part. . .your baby.