Need some positive thoughts

[lola]

Hi All, my name is Kathryn , i am 28 and my 15 month old daughter has just been diagnosed with CF. We are totally devestated, i cant look at her without wanting to burt into tears at the thought if her not being here. the statistic of an life expectancy of 30 makes me physically vomit. I am also 2 weeks away from giving birth to my second child which i am told has a 25% chance of also having CF.

I know i probably sound mellow dramatic but we really do feel like our life has been torn apart- we only found out 2 days ago- i just need to hear some positive things!

 

[lola]

Hi All, my name is Kathryn , i am 28 and my 15 month old daughter has just been diagnosed with CF. We are totally devestated, i cant look at her without wanting to burt into tears at the thought if her not being here. the statistic of an life expectancy of 30 makes me physically vomit. I am also 2 weeks away from giving birth to my second child which i am told has a 25% chance of also having CF.

I know i probably sound mellow dramatic but we really do feel like our life has been torn apart- we only found out 2 days ago- i just need to hear some positive things!

 

[lola]

Hi All, my name is Kathryn , i am 28 and my 15 month old daughter has just been diagnosed with CF. We are totally devestated, i cant look at her without wanting to burt into tears at the thought if her not being here. the statistic of an life expectancy of 30 makes me physically vomit. I am also 2 weeks away from giving birth to my second child which i am told has a 25% chance of also having CF.

I know i probably sound mellow dramatic but we really do feel like our life has been torn apart- we only found out 2 days ago- i just need to hear some positive things!

 

[JazzysMom]

First of all welcome to an elete group tho its one heck of a way to join. Positive things are at this point. Your daughter is young and diagnosed early enough that you have a fighting chance to keep her healthy for awhile since you learned about CF before too much damage could be done. Same things goes for your unborn baby if indeed the baby falls into that 25% slot. Med have advanced greatly over the years. NOW our outlook is of the utmost importance. I realize its all very new/fresh/raw for you. It will take time to absorb it all & adjust. That is what we are here for. I recommend you starting a log of sorts. Write every concern & question down along with the answers and directions given to you while you get into the CF routine. When your 2nd child comes it will be nearly impossible to keep things straight. Organization is helpful so if you are great in that area it will be easier. We have lots of older CFers on here, but sadly we have people who have lots loved CFers also. So tho I am trying to encourage you to help push you forward.....dont be shocked as reality sets in! HUGS TO YOU.....

 

[JazzysMom]

First of all welcome to an elete group tho its one heck of a way to join. Positive things are at this point. Your daughter is young and diagnosed early enough that you have a fighting chance to keep her healthy for awhile since you learned about CF before too much damage could be done. Same things goes for your unborn baby if indeed the baby falls into that 25% slot. Med have advanced greatly over the years. NOW our outlook is of the utmost importance. I realize its all very new/fresh/raw for you. It will take time to absorb it all & adjust. That is what we are here for. I recommend you starting a log of sorts. Write every concern & question down along with the answers and directions given to you while you get into the CF routine. When your 2nd child comes it will be nearly impossible to keep things straight. Organization is helpful so if you are great in that area it will be easier. We have lots of older CFers on here, but sadly we have people who have lots loved CFers also. So tho I am trying to encourage you to help push you forward.....dont be shocked as reality sets in! HUGS TO YOU.....

 

[JazzysMom]

First of all welcome to an elete group tho its one heck of a way to join. Positive things are at this point. Your daughter is young and diagnosed early enough that you have a fighting chance to keep her healthy for awhile since you learned about CF before too much damage could be done. Same things goes for your unborn baby if indeed the baby falls into that 25% slot. Med have advanced greatly over the years. NOW our outlook is of the utmost importance. I realize its all very new/fresh/raw for you. It will take time to absorb it all & adjust. That is what we are here for. I recommend you starting a log of sorts. Write every concern & question down along with the answers and directions given to you while you get into the CF routine. When your 2nd child comes it will be nearly impossible to keep things straight. Organization is helpful so if you are great in that area it will be easier. We have lots of older CFers on here, but sadly we have people who have lots loved CFers also. So tho I am trying to encourage you to help push you forward.....dont be shocked as reality sets in! HUGS TO YOU.....

 

[folione]

I'm sorry you find yourself joining this group; I am dad to an almost-4 year old with CF and know what you're feeling. I think those early days were probably the worst I've ever felt. But it does get better as you see your little one start to grow and do all the usual normal tot stuff. The work of dealing with CF will eventually move a bit into the background. However, it's not melodramatic in the least to suffer grief in these circumstances and you've got to be patient with yourself while you go through it.

You'll find lots of encouraging stories here about happy healthy tots with CF. My boy is one of them. He's not missed out on any of the typical growing joys and pains of any other child; the CF does not slow him down or hinder him in any way.

 

[folione]

I'm sorry you find yourself joining this group; I am dad to an almost-4 year old with CF and know what you're feeling. I think those early days were probably the worst I've ever felt. But it does get better as you see your little one start to grow and do all the usual normal tot stuff. The work of dealing with CF will eventually move a bit into the background. However, it's not melodramatic in the least to suffer grief in these circumstances and you've got to be patient with yourself while you go through it.

You'll find lots of encouraging stories here about happy healthy tots with CF. My boy is one of them. He's not missed out on any of the typical growing joys and pains of any other child; the CF does not slow him down or hinder him in any way.

 

[folione]

I'm sorry you find yourself joining this group; I am dad to an almost-4 year old with CF and know what you're feeling. I think those early days were probably the worst I've ever felt. But it does get better as you see your little one start to grow and do all the usual normal tot stuff. The work of dealing with CF will eventually move a bit into the background. However, it's not melodramatic in the least to suffer grief in these circumstances and you've got to be patient with yourself while you go through it.

You'll find lots of encouraging stories here about happy healthy tots with CF. My boy is one of them. He's not missed out on any of the typical growing joys and pains of any other child; the CF does not slow him down or hinder him in any way.

 

[relat]

I am so sorry about how you feel.Your child has a better future because it is born now,the average of life increases very much.You may be alive to see a cure!Don't stop hoping,there are many things you can do to have quality in your child's life and God will help too..

relat,27,having 26 yr old brother w/cf diagnosed at 20.

 

[relat]

I am so sorry about how you feel.Your child has a better future because it is born now,the average of life increases very much.You may be alive to see a cure!Don't stop hoping,there are many things you can do to have quality in your child's life and God will help too..

relat,27,having 26 yr old brother w/cf diagnosed at 20.

 

[relat]

I am so sorry about how you feel.Your child has a better future because it is born now,the average of life increases very much.You may be alive to see a cure!Don't stop hoping,there are many things you can do to have quality in your child's life and God will help too..

relat,27,having 26 yr old brother w/cf diagnosed at 20.

 

[Mairi]

Hi Kathryn,

I remember these feelings, still have the odd moment even now and my son is 2. He was diagnosed at birth and went through 3 operations before he really turned the corner. Now the positive stuff. He is the happiest, cheekiest, funniest child. He keeps amazingly well and has never had a chest infection or hospitalisation other than for the operations i mentioned. At the beginning everything does just seem too overwhelming, I'm sure this is much worse for you also having to worry about your new arrival too. As time goes on and you learn more you will see that its not at all a doom and gloom picture. Things are much better for people with CF these days. That average life expectancy of 30 is for people that were born 30 years ago. I read somewhere the other day that babies and children diagnosed nowadays have every chance of living to see CF, not as a life threatening illness but merely a slight inconvenience. I'm not sure where you are, but I'm sure you will receive the best possible care for your child. We live in Scotland and couldn't be happier with the care our son receives.

I hope my words of wisdom help you in some way.

Mary

 

[Mairi]

Hi Kathryn,

I remember these feelings, still have the odd moment even now and my son is 2. He was diagnosed at birth and went through 3 operations before he really turned the corner. Now the positive stuff. He is the happiest, cheekiest, funniest child. He keeps amazingly well and has never had a chest infection or hospitalisation other than for the operations i mentioned. At the beginning everything does just seem too overwhelming, I'm sure this is much worse for you also having to worry about your new arrival too. As time goes on and you learn more you will see that its not at all a doom and gloom picture. Things are much better for people with CF these days. That average life expectancy of 30 is for people that were born 30 years ago. I read somewhere the other day that babies and children diagnosed nowadays have every chance of living to see CF, not as a life threatening illness but merely a slight inconvenience. I'm not sure where you are, but I'm sure you will receive the best possible care for your child. We live in Scotland and couldn't be happier with the care our son receives.

I hope my words of wisdom help you in some way.

Mary

 

[Mairi]

Hi Kathryn,

I remember these feelings, still have the odd moment even now and my son is 2. He was diagnosed at birth and went through 3 operations before he really turned the corner. Now the positive stuff. He is the happiest, cheekiest, funniest child. He keeps amazingly well and has never had a chest infection or hospitalisation other than for the operations i mentioned. At the beginning everything does just seem too overwhelming, I'm sure this is much worse for you also having to worry about your new arrival too. As time goes on and you learn more you will see that its not at all a doom and gloom picture. Things are much better for people with CF these days. That average life expectancy of 30 is for people that were born 30 years ago. I read somewhere the other day that babies and children diagnosed nowadays have every chance of living to see CF, not as a life threatening illness but merely a slight inconvenience. I'm not sure where you are, but I'm sure you will receive the best possible care for your child. We live in Scotland and couldn't be happier with the care our son receives.

I hope my words of wisdom help you in some way.

Mary

 

[BigBee]

Hi Kathryn,

Welcome. I'm glad you've found us. One thing I've found that helps me is to remember that the average age (now at nearly 37) has gone up every year. Also, the people now at the "avg" age didn't have the benefits of the currently available medications when they were young children - your child will. If you haven't already seek treatment with an accredited CF center. Ask questions. Be proactive. You are your child's best advocate. Come here for support or answers to questions.

 

[BigBee]

Hi Kathryn,

Welcome. I'm glad you've found us. One thing I've found that helps me is to remember that the average age (now at nearly 37) has gone up every year. Also, the people now at the "avg" age didn't have the benefits of the currently available medications when they were young children - your child will. If you haven't already seek treatment with an accredited CF center. Ask questions. Be proactive. You are your child's best advocate. Come here for support or answers to questions.

 

[BigBee]

Hi Kathryn,

Welcome. I'm glad you've found us. One thing I've found that helps me is to remember that the average age (now at nearly 37) has gone up every year. Also, the people now at the "avg" age didn't have the benefits of the currently available medications when they were young children - your child will. If you haven't already seek treatment with an accredited CF center. Ask questions. Be proactive. You are your child's best advocate. Come here for support or answers to questions.

 

[Rebjane]

Kathryn,

Welcome to this site. I understand how you feel. I have two children, one 8 years old without CF and one 4 years old with CF. I found out my daughter had CF when I was pregnant with her. I could not stop crying. I was devastated, angry at everyone. Being pregnant is hard enough, then I was told my son(4 at the time could have CF , too). He was tested and does NOT have CF. While I was waiting for the test results, I thought I woudl just breakdown. I did not.

You are entitled to your feelings. Just know that your daughter who is 15 months may start to feel better now that she has the CF diagnosis. the proper treatment at a CF clinic may keep her healthier. She is still the same little girl.

My daughter with CF has a full and happy life. Right now she is at nursery school for the morning. she goes to dance classes, birthday parties( in fact she just got an invitation to one today). She has best friends, she is social, outgoing and really one of the leaders of the pack of her friends.

We do treatments to keep my daughter healthy. Breathing treatments, VEST(chest physical therapy), enzymes with food. She is growing and having a fulfillling life. It may not be the road I would have picked for our family or our daughter but we are making the best of it.

Please feel free to always ask questions

Take care of yourself

Rebecca

 

[Rebjane]

Kathryn,

Welcome to this site. I understand how you feel. I have two children, one 8 years old without CF and one 4 years old with CF. I found out my daughter had CF when I was pregnant with her. I could not stop crying. I was devastated, angry at everyone. Being pregnant is hard enough, then I was told my son(4 at the time could have CF , too). He was tested and does NOT have CF. While I was waiting for the test results, I thought I woudl just breakdown. I did not.

You are entitled to your feelings. Just know that your daughter who is 15 months may start to feel better now that she has the CF diagnosis. the proper treatment at a CF clinic may keep her healthier. She is still the same little girl.

My daughter with CF has a full and happy life. Right now she is at nursery school for the morning. she goes to dance classes, birthday parties( in fact she just got an invitation to one today). She has best friends, she is social, outgoing and really one of the leaders of the pack of her friends.

We do treatments to keep my daughter healthy. Breathing treatments, VEST(chest physical therapy), enzymes with food. She is growing and having a fulfillling life. It may not be the road I would have picked for our family or our daughter but we are making the best of it.

Please feel free to always ask questions

Take care of yourself

Rebecca