New to all this

[Ratatosk]

Life does go on, though not exactly the way you expected prior to finding out your child has CF. I had the same worries about continuing to work and the daycare issue. Figured eventually he was going to be going to kindergarten, regular school, but we were concerned -- would he always be sick, would he need specialized care...

DS goes to a center -- he started out in the baby room with 5-6 other babies, they kept him away from the germy toddlers. They give him his enzymes. They warn all of us parents if there are any bugs going around. Handwashing, sanitizing toys and surfaces...

DS has flown to mexico and denver a few times. End up with a LOT of carry on stuff -- nebulizer, meds, etc. Didn't have his vest yet the last time we travelled.

We don't have any other children. Haven't had a need for an in home nurse.

As far as activities he doesn't take part in, we don't let him interact with other cfers, though there aren't many in our area, so other than great strides or the clinic, it's not an issue. He's in gymnastics and sunday school. Has taken swimming lessons in the past.

No family history whatsover and the geneology stuff goes wayyyy back on both sides of our families. Only maybe is an uncle who died shortly after birth.

 

[Ratatosk]

Life does go on, though not exactly the way you expected prior to finding out your child has CF. I had the same worries about continuing to work and the daycare issue. Figured eventually he was going to be going to kindergarten, regular school, but we were concerned -- would he always be sick, would he need specialized care...

DS goes to a center -- he started out in the baby room with 5-6 other babies, they kept him away from the germy toddlers. They give him his enzymes. They warn all of us parents if there are any bugs going around. Handwashing, sanitizing toys and surfaces...

DS has flown to mexico and denver a few times. End up with a LOT of carry on stuff -- nebulizer, meds, etc. Didn't have his vest yet the last time we travelled.

We don't have any other children. Haven't had a need for an in home nurse.

As far as activities he doesn't take part in, we don't let him interact with other cfers, though there aren't many in our area, so other than great strides or the clinic, it's not an issue. He's in gymnastics and sunday school. Has taken swimming lessons in the past.

No family history whatsover and the geneology stuff goes wayyyy back on both sides of our families. Only maybe is an uncle who died shortly after birth.

 

[Ratatosk]

Life does go on, though not exactly the way you expected prior to finding out your child has CF. I had the same worries about continuing to work and the daycare issue. Figured eventually he was going to be going to kindergarten, regular school, but we were concerned -- would he always be sick, would he need specialized care...

DS goes to a center -- he started out in the baby room with 5-6 other babies, they kept him away from the germy toddlers. They give him his enzymes. They warn all of us parents if there are any bugs going around. Handwashing, sanitizing toys and surfaces...

DS has flown to mexico and denver a few times. End up with a LOT of carry on stuff -- nebulizer, meds, etc. Didn't have his vest yet the last time we travelled.

We don't have any other children. Haven't had a need for an in home nurse.

As far as activities he doesn't take part in, we don't let him interact with other cfers, though there aren't many in our area, so other than great strides or the clinic, it's not an issue. He's in gymnastics and sunday school. Has taken swimming lessons in the past.

No family history whatsover and the geneology stuff goes wayyyy back on both sides of our families. Only maybe is an uncle who died shortly after birth.

 

[Ratatosk]

Life does go on, though not exactly the way you expected prior to finding out your child has CF. I had the same worries about continuing to work and the daycare issue. Figured eventually he was going to be going to kindergarten, regular school, but we were concerned -- would he always be sick, would he need specialized care...

DS goes to a center -- he started out in the baby room with 5-6 other babies, they kept him away from the germy toddlers. They give him his enzymes. They warn all of us parents if there are any bugs going around. Handwashing, sanitizing toys and surfaces...

DS has flown to mexico and denver a few times. End up with a LOT of carry on stuff -- nebulizer, meds, etc. Didn't have his vest yet the last time we travelled.

We don't have any other children. Haven't had a need for an in home nurse.

As far as activities he doesn't take part in, we don't let him interact with other cfers, though there aren't many in our area, so other than great strides or the clinic, it's not an issue. He's in gymnastics and sunday school. Has taken swimming lessons in the past.

No family history whatsover and the geneology stuff goes wayyyy back on both sides of our families. Only maybe is an uncle who died shortly after birth.

 

[Ratatosk]

Life does go on, though not exactly the way you expected prior to finding out your child has CF. I had the same worries about continuing to work and the daycare issue. Figured eventually he was going to be going to kindergarten, regular school, but we were concerned -- would he always be sick, would he need specialized care...

DS goes to a center -- he started out in the baby room with 5-6 other babies, they kept him away from the germy toddlers. They give him his enzymes. They warn all of us parents if there are any bugs going around. Handwashing, sanitizing toys and surfaces...

DS has flown to mexico and denver a few times. End up with a LOT of carry on stuff -- nebulizer, meds, etc. Didn't have his vest yet the last time we travelled.

We don't have any other children. Haven't had a need for an in home nurse.

As far as activities he doesn't take part in, we don't let him interact with other cfers, though there aren't many in our area, so other than great strides or the clinic, it's not an issue. He's in gymnastics and sunday school. Has taken swimming lessons in the past.

No family history whatsover and the geneology stuff goes wayyyy back on both sides of our families. Only maybe is an uncle who died shortly after birth.

 

[AbbysMama]

Jessie,

Welcome to the forum. You have found an excellent source of info here and these folks are WONDERFUL. My 16 month old was diagnosed prenatally. There's not a lot out there to help you come to grips with all of this, but this site has it all. Don't fear to ask questions. I'm off to work on homework, but I'll be back to answer your questions. Don't be afraid to ask anything. Most of us LOVE typing and interacting on here. Your questions help us learn how to help you and others.

Hugs!

Emily

 

[AbbysMama]

Jessie,

Welcome to the forum. You have found an excellent source of info here and these folks are WONDERFUL. My 16 month old was diagnosed prenatally. There's not a lot out there to help you come to grips with all of this, but this site has it all. Don't fear to ask questions. I'm off to work on homework, but I'll be back to answer your questions. Don't be afraid to ask anything. Most of us LOVE typing and interacting on here. Your questions help us learn how to help you and others.

Hugs!

Emily

 

[AbbysMama]

Jessie,

Welcome to the forum. You have found an excellent source of info here and these folks are WONDERFUL. My 16 month old was diagnosed prenatally. There's not a lot out there to help you come to grips with all of this, but this site has it all. Don't fear to ask questions. I'm off to work on homework, but I'll be back to answer your questions. Don't be afraid to ask anything. Most of us LOVE typing and interacting on here. Your questions help us learn how to help you and others.

Hugs!

Emily

 

[AbbysMama]

Jessie,

Welcome to the forum. You have found an excellent source of info here and these folks are WONDERFUL. My 16 month old was diagnosed prenatally. There's not a lot out there to help you come to grips with all of this, but this site has it all. Don't fear to ask questions. I'm off to work on homework, but I'll be back to answer your questions. Don't be afraid to ask anything. Most of us LOVE typing and interacting on here. Your questions help us learn how to help you and others.

Hugs!

Emily

 

[AbbysMama]

Jessie,

Welcome to the forum. You have found an excellent source of info here and these folks are WONDERFUL. My 16 month old was diagnosed prenatally. There's not a lot out there to help you come to grips with all of this, but this site has it all. Don't fear to ask questions. I'm off to work on homework, but I'll be back to answer your questions. Don't be afraid to ask anything. Most of us LOVE typing and interacting on here. Your questions help us learn how to help you and others.

Hugs!

Emily

 

[LouLou]

I wasn't going to respond but I read your post to my husband and he said I had to respond. I should have had him write LOL that would have been a first. He feels I can offer you some hope.

I have cf. Diagnosed at age 2 in 1980. I have what are considered severe mutations yet played soccer and tennis through high school, graduated college and have worked full time ever since.

4 mo. ago I had my first child. In 2004 my husband was tested for carrier status - like you guys we didn't want a child with special needs...especially cf. In fact, I felt very strongly that I didn't want to bring another cfer into the world. Well he wasn't a carrier so in 2006 we decided to start trying. We got pregnant the first month! My pregnancy was great. In fact I felt the best I had in a very long time. We were surprised to learn during on of our meetings with the genetic counselor that we still had a 1 in 500 chance of having a cfer. Evidently my husband had been tested for 89 mutations which made up 95% of known mutations. We didn't push to get husband tested for add'l mutations but knew that we would test Isaac after birth to hopefully close the book on cf. Well when Isaac was 3 months old to the day we got the genetic results that he has 2 mutations. He had a negative newborn screening, negative sweat test, he's pancreatic sufficient and shows no signs of lung involvement. His vas deferens are present. Basically he has nothing against him other than the finding of the two mutations. For this reason he does not have a cf diagnosis. He is being followed by a cf center though. We are so glad we have Isaac and so glad things happened the way they did. We don't regret a thing and we'd do it again in a heartbeat.

I hope you can enjoy your pregnancy and not dwell on this. Hopefully you will find out that your baby doesn't have cf. But rest assured that the outlook for a child with cf born in 2008 is outstanding. As a doctor said to me recently trying to make me and husband feel better (although it stung a little), "Your son will never have the cf you have." He was inferring the mutations my son has will never yield the extent of the symptoms I have at least not at my age and due to medical advancements that he will be able to reap the outlook is very encouraging. And look at me I'm alive and kickin' !!

 

[LouLou]

I wasn't going to respond but I read your post to my husband and he said I had to respond. I should have had him write LOL that would have been a first. He feels I can offer you some hope.

I have cf. Diagnosed at age 2 in 1980. I have what are considered severe mutations yet played soccer and tennis through high school, graduated college and have worked full time ever since.

4 mo. ago I had my first child. In 2004 my husband was tested for carrier status - like you guys we didn't want a child with special needs...especially cf. In fact, I felt very strongly that I didn't want to bring another cfer into the world. Well he wasn't a carrier so in 2006 we decided to start trying. We got pregnant the first month! My pregnancy was great. In fact I felt the best I had in a very long time. We were surprised to learn during on of our meetings with the genetic counselor that we still had a 1 in 500 chance of having a cfer. Evidently my husband had been tested for 89 mutations which made up 95% of known mutations. We didn't push to get husband tested for add'l mutations but knew that we would test Isaac after birth to hopefully close the book on cf. Well when Isaac was 3 months old to the day we got the genetic results that he has 2 mutations. He had a negative newborn screening, negative sweat test, he's pancreatic sufficient and shows no signs of lung involvement. His vas deferens are present. Basically he has nothing against him other than the finding of the two mutations. For this reason he does not have a cf diagnosis. He is being followed by a cf center though. We are so glad we have Isaac and so glad things happened the way they did. We don't regret a thing and we'd do it again in a heartbeat.

I hope you can enjoy your pregnancy and not dwell on this. Hopefully you will find out that your baby doesn't have cf. But rest assured that the outlook for a child with cf born in 2008 is outstanding. As a doctor said to me recently trying to make me and husband feel better (although it stung a little), "Your son will never have the cf you have." He was inferring the mutations my son has will never yield the extent of the symptoms I have at least not at my age and due to medical advancements that he will be able to reap the outlook is very encouraging. And look at me I'm alive and kickin' !!

 

[LouLou]

I wasn't going to respond but I read your post to my husband and he said I had to respond. I should have had him write LOL that would have been a first. He feels I can offer you some hope.

I have cf. Diagnosed at age 2 in 1980. I have what are considered severe mutations yet played soccer and tennis through high school, graduated college and have worked full time ever since.

4 mo. ago I had my first child. In 2004 my husband was tested for carrier status - like you guys we didn't want a child with special needs...especially cf. In fact, I felt very strongly that I didn't want to bring another cfer into the world. Well he wasn't a carrier so in 2006 we decided to start trying. We got pregnant the first month! My pregnancy was great. In fact I felt the best I had in a very long time. We were surprised to learn during on of our meetings with the genetic counselor that we still had a 1 in 500 chance of having a cfer. Evidently my husband had been tested for 89 mutations which made up 95% of known mutations. We didn't push to get husband tested for add'l mutations but knew that we would test Isaac after birth to hopefully close the book on cf. Well when Isaac was 3 months old to the day we got the genetic results that he has 2 mutations. He had a negative newborn screening, negative sweat test, he's pancreatic sufficient and shows no signs of lung involvement. His vas deferens are present. Basically he has nothing against him other than the finding of the two mutations. For this reason he does not have a cf diagnosis. He is being followed by a cf center though. We are so glad we have Isaac and so glad things happened the way they did. We don't regret a thing and we'd do it again in a heartbeat.

I hope you can enjoy your pregnancy and not dwell on this. Hopefully you will find out that your baby doesn't have cf. But rest assured that the outlook for a child with cf born in 2008 is outstanding. As a doctor said to me recently trying to make me and husband feel better (although it stung a little), "Your son will never have the cf you have." He was inferring the mutations my son has will never yield the extent of the symptoms I have at least not at my age and due to medical advancements that he will be able to reap the outlook is very encouraging. And look at me I'm alive and kickin' !!

 

[LouLou]

I wasn't going to respond but I read your post to my husband and he said I had to respond. I should have had him write LOL that would have been a first. He feels I can offer you some hope.

I have cf. Diagnosed at age 2 in 1980. I have what are considered severe mutations yet played soccer and tennis through high school, graduated college and have worked full time ever since.

4 mo. ago I had my first child. In 2004 my husband was tested for carrier status - like you guys we didn't want a child with special needs...especially cf. In fact, I felt very strongly that I didn't want to bring another cfer into the world. Well he wasn't a carrier so in 2006 we decided to start trying. We got pregnant the first month! My pregnancy was great. In fact I felt the best I had in a very long time. We were surprised to learn during on of our meetings with the genetic counselor that we still had a 1 in 500 chance of having a cfer. Evidently my husband had been tested for 89 mutations which made up 95% of known mutations. We didn't push to get husband tested for add'l mutations but knew that we would test Isaac after birth to hopefully close the book on cf. Well when Isaac was 3 months old to the day we got the genetic results that he has 2 mutations. He had a negative newborn screening, negative sweat test, he's pancreatic sufficient and shows no signs of lung involvement. His vas deferens are present. Basically he has nothing against him other than the finding of the two mutations. For this reason he does not have a cf diagnosis. He is being followed by a cf center though. We are so glad we have Isaac and so glad things happened the way they did. We don't regret a thing and we'd do it again in a heartbeat.

I hope you can enjoy your pregnancy and not dwell on this. Hopefully you will find out that your baby doesn't have cf. But rest assured that the outlook for a child with cf born in 2008 is outstanding. As a doctor said to me recently trying to make me and husband feel better (although it stung a little), "Your son will never have the cf you have." He was inferring the mutations my son has will never yield the extent of the symptoms I have at least not at my age and due to medical advancements that he will be able to reap the outlook is very encouraging. And look at me I'm alive and kickin' !!

 

[LouLou]

I wasn't going to respond but I read your post to my husband and he said I had to respond. I should have had him write LOL that would have been a first. He feels I can offer you some hope.

I have cf. Diagnosed at age 2 in 1980. I have what are considered severe mutations yet played soccer and tennis through high school, graduated college and have worked full time ever since.

4 mo. ago I had my first child. In 2004 my husband was tested for carrier status - like you guys we didn't want a child with special needs...especially cf. In fact, I felt very strongly that I didn't want to bring another cfer into the world. Well he wasn't a carrier so in 2006 we decided to start trying. We got pregnant the first month! My pregnancy was great. In fact I felt the best I had in a very long time. We were surprised to learn during on of our meetings with the genetic counselor that we still had a 1 in 500 chance of having a cfer. Evidently my husband had been tested for 89 mutations which made up 95% of known mutations. We didn't push to get husband tested for add'l mutations but knew that we would test Isaac after birth to hopefully close the book on cf. Well when Isaac was 3 months old to the day we got the genetic results that he has 2 mutations. He had a negative newborn screening, negative sweat test, he's pancreatic sufficient and shows no signs of lung involvement. His vas deferens are present. Basically he has nothing against him other than the finding of the two mutations. For this reason he does not have a cf diagnosis. He is being followed by a cf center though. We are so glad we have Isaac and so glad things happened the way they did. We don't regret a thing and we'd do it again in a heartbeat.

I hope you can enjoy your pregnancy and not dwell on this. Hopefully you will find out that your baby doesn't have cf. But rest assured that the outlook for a child with cf born in 2008 is outstanding. As a doctor said to me recently trying to make me and husband feel better (although it stung a little), "Your son will never have the cf you have." He was inferring the mutations my son has will never yield the extent of the symptoms I have at least not at my age and due to medical advancements that he will be able to reap the outlook is very encouraging. And look at me I'm alive and kickin' !!

 

[JORDYSMOM]

Hi and welcome to the site. I can't really add anything to what the others have said. My son wasn't dx until he was 15 years old, so I didn't go through the same things as the previous posters. I do want to say though, that having gone all of those years not really knowing what was wrong with my child was very frustrating. I think knowing before your child is born, puts you at a great advantage. Since my son's dx, he has received proper treatment, and is now healthier than he's every been.

As the others have mentioned, every case is different. I would encourage you to educate yourself carefully, with up to date information. For me, knowledge is power. I would also warn you not to overload yourself. Take in a little at a time, and remember to enjoy your pregnancy. Don't concentrate so much on the bad that you miss out on the good. THERE IS GOOD!! Some days it's hard to see, but it is there.

Keep us posted.

Stacey

 

[JORDYSMOM]

Hi and welcome to the site. I can't really add anything to what the others have said. My son wasn't dx until he was 15 years old, so I didn't go through the same things as the previous posters. I do want to say though, that having gone all of those years not really knowing what was wrong with my child was very frustrating. I think knowing before your child is born, puts you at a great advantage. Since my son's dx, he has received proper treatment, and is now healthier than he's every been.

As the others have mentioned, every case is different. I would encourage you to educate yourself carefully, with up to date information. For me, knowledge is power. I would also warn you not to overload yourself. Take in a little at a time, and remember to enjoy your pregnancy. Don't concentrate so much on the bad that you miss out on the good. THERE IS GOOD!! Some days it's hard to see, but it is there.

Keep us posted.

Stacey

 

[JORDYSMOM]

Hi and welcome to the site. I can't really add anything to what the others have said. My son wasn't dx until he was 15 years old, so I didn't go through the same things as the previous posters. I do want to say though, that having gone all of those years not really knowing what was wrong with my child was very frustrating. I think knowing before your child is born, puts you at a great advantage. Since my son's dx, he has received proper treatment, and is now healthier than he's every been.

As the others have mentioned, every case is different. I would encourage you to educate yourself carefully, with up to date information. For me, knowledge is power. I would also warn you not to overload yourself. Take in a little at a time, and remember to enjoy your pregnancy. Don't concentrate so much on the bad that you miss out on the good. THERE IS GOOD!! Some days it's hard to see, but it is there.

Keep us posted.

Stacey

 

[JORDYSMOM]

Hi and welcome to the site. I can't really add anything to what the others have said. My son wasn't dx until he was 15 years old, so I didn't go through the same things as the previous posters. I do want to say though, that having gone all of those years not really knowing what was wrong with my child was very frustrating. I think knowing before your child is born, puts you at a great advantage. Since my son's dx, he has received proper treatment, and is now healthier than he's every been.

As the others have mentioned, every case is different. I would encourage you to educate yourself carefully, with up to date information. For me, knowledge is power. I would also warn you not to overload yourself. Take in a little at a time, and remember to enjoy your pregnancy. Don't concentrate so much on the bad that you miss out on the good. THERE IS GOOD!! Some days it's hard to see, but it is there.

Keep us posted.

Stacey

 

[JORDYSMOM]

Hi and welcome to the site. I can't really add anything to what the others have said. My son wasn't dx until he was 15 years old, so I didn't go through the same things as the previous posters. I do want to say though, that having gone all of those years not really knowing what was wrong with my child was very frustrating. I think knowing before your child is born, puts you at a great advantage. Since my son's dx, he has received proper treatment, and is now healthier than he's every been.

As the others have mentioned, every case is different. I would encourage you to educate yourself carefully, with up to date information. For me, knowledge is power. I would also warn you not to overload yourself. Take in a little at a time, and remember to enjoy your pregnancy. Don't concentrate so much on the bad that you miss out on the good. THERE IS GOOD!! Some days it's hard to see, but it is there.

Keep us posted.

Stacey