daughters diagnosed in 2005

L

LovingMommy

New member
<i><i>Hi everyone!

I just happened to come across this site, and thought i'd share some of my story.

I have a 5 year old daughter and 17 month old daughter which of whom both have C.F. My oldest daughter was diagnosed when she was 3 years old after years of constant vistis to the doc trying to find answers as to why she was sick all the time(pneumonia). When she got diagnosed, I had no clue what Cystic Fibrosis was, and when the docs explained the illness to me I was in complete shock! I thought they made a mistake and mis-diagnosed her, and demanded they do a re test (sweat test). So they did...and again her sweat chloride level was 114, At that moment I felt like my world came crashing down on me, because I was 2 months pregnant with my second child (which I later found out also has C.F.) There are no words that can describe the emotions I felt that day, and honestly after 2 years, I'm still struggling with my emotions and the reality of this disease.

My oldest daughter is very healthy, but my youngest is always ill. She has been admitted to hospital twice in her short little life. Since the hospital stay, they have put her on Ventolin, Flowvent, Pulmozyme, and upped physio to 3x's a day...now she's doing great and better then ever.

I'm still having a hard time coming to terms with their diagnosis after 2 years. Is this normal? Does anyone else feel this way?

I've tried to find a support group out here for parents of CF children, but unfortunately the local chapter advised me that due to the lack of people, there is no longer a support group. So what do I do now?

I try to think positively, but when I read stories of other people and their struggles, I get worried....But everyone's born for a reason right? and I believe that god sent me 2 little angels from heaven to watch over us, and to make a difference in this world, afterall some say God works in mysterious ways.</i>
 
L

LovingMommy

New member
<i><i>Hi everyone!

I just happened to come across this site, and thought i'd share some of my story.

I have a 5 year old daughter and 17 month old daughter which of whom both have C.F. My oldest daughter was diagnosed when she was 3 years old after years of constant vistis to the doc trying to find answers as to why she was sick all the time(pneumonia). When she got diagnosed, I had no clue what Cystic Fibrosis was, and when the docs explained the illness to me I was in complete shock! I thought they made a mistake and mis-diagnosed her, and demanded they do a re test (sweat test). So they did...and again her sweat chloride level was 114, At that moment I felt like my world came crashing down on me, because I was 2 months pregnant with my second child (which I later found out also has C.F.) There are no words that can describe the emotions I felt that day, and honestly after 2 years, I'm still struggling with my emotions and the reality of this disease.

My oldest daughter is very healthy, but my youngest is always ill. She has been admitted to hospital twice in her short little life. Since the hospital stay, they have put her on Ventolin, Flowvent, Pulmozyme, and upped physio to 3x's a day...now she's doing great and better then ever.

I'm still having a hard time coming to terms with their diagnosis after 2 years. Is this normal? Does anyone else feel this way?

I've tried to find a support group out here for parents of CF children, but unfortunately the local chapter advised me that due to the lack of people, there is no longer a support group. So what do I do now?

I try to think positively, but when I read stories of other people and their struggles, I get worried....But everyone's born for a reason right? and I believe that god sent me 2 little angels from heaven to watch over us, and to make a difference in this world, afterall some say God works in mysterious ways.</i>
 
L

LovingMommy

New member
<i><i>Hi everyone!

I just happened to come across this site, and thought i'd share some of my story.

I have a 5 year old daughter and 17 month old daughter which of whom both have C.F. My oldest daughter was diagnosed when she was 3 years old after years of constant vistis to the doc trying to find answers as to why she was sick all the time(pneumonia). When she got diagnosed, I had no clue what Cystic Fibrosis was, and when the docs explained the illness to me I was in complete shock! I thought they made a mistake and mis-diagnosed her, and demanded they do a re test (sweat test). So they did...and again her sweat chloride level was 114, At that moment I felt like my world came crashing down on me, because I was 2 months pregnant with my second child (which I later found out also has C.F.) There are no words that can describe the emotions I felt that day, and honestly after 2 years, I'm still struggling with my emotions and the reality of this disease.

My oldest daughter is very healthy, but my youngest is always ill. She has been admitted to hospital twice in her short little life. Since the hospital stay, they have put her on Ventolin, Flowvent, Pulmozyme, and upped physio to 3x's a day...now she's doing great and better then ever.

I'm still having a hard time coming to terms with their diagnosis after 2 years. Is this normal? Does anyone else feel this way?

I've tried to find a support group out here for parents of CF children, but unfortunately the local chapter advised me that due to the lack of people, there is no longer a support group. So what do I do now?

I try to think positively, but when I read stories of other people and their struggles, I get worried....But everyone's born for a reason right? and I believe that god sent me 2 little angels from heaven to watch over us, and to make a difference in this world, afterall some say God works in mysterious ways.</i>
 
M

Mommafirst

Guest
Welcome to the site. I'm not as long into the journey as you, but not far off either. My daughter was diagnosed last June at 5 months old, but I first heard the words cystic fibrosis in relation to US, a year ago when she was born with meconium illeus. I think its normal that you still have a lot of emotions surrounding the diagnosis. I look at my daughter someday and feel afraid to wonder what she'll be when she grows up or who she'll marry.

This site has been very helpful to me, though everything about CF makes me so sad. I am sure that you will find the support and inspiration you have been searching for -- so welcome.
 
M

Mommafirst

Guest
Welcome to the site. I'm not as long into the journey as you, but not far off either. My daughter was diagnosed last June at 5 months old, but I first heard the words cystic fibrosis in relation to US, a year ago when she was born with meconium illeus. I think its normal that you still have a lot of emotions surrounding the diagnosis. I look at my daughter someday and feel afraid to wonder what she'll be when she grows up or who she'll marry.

This site has been very helpful to me, though everything about CF makes me so sad. I am sure that you will find the support and inspiration you have been searching for -- so welcome.
 
M

Mommafirst

Guest
Welcome to the site. I'm not as long into the journey as you, but not far off either. My daughter was diagnosed last June at 5 months old, but I first heard the words cystic fibrosis in relation to US, a year ago when she was born with meconium illeus. I think its normal that you still have a lot of emotions surrounding the diagnosis. I look at my daughter someday and feel afraid to wonder what she'll be when she grows up or who she'll marry.

This site has been very helpful to me, though everything about CF makes me so sad. I am sure that you will find the support and inspiration you have been searching for -- so welcome.
 
N

NoExcuses

New member
This place can be a great support group. You're not alone - you'll find many parents who are going through what you are.

Some are in total denial about their kid's diagnosis, some are very well adjusted and have faced this disease head on, and there are some in the middle as well.

And there are a bunch of CF adults here as well that can help you get perspective on what it's like to a CF patient, not just a parent.

I hope you find hope here <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

New member
This place can be a great support group. You're not alone - you'll find many parents who are going through what you are.

Some are in total denial about their kid's diagnosis, some are very well adjusted and have faced this disease head on, and there are some in the middle as well.

And there are a bunch of CF adults here as well that can help you get perspective on what it's like to a CF patient, not just a parent.

I hope you find hope here <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

New member
This place can be a great support group. You're not alone - you'll find many parents who are going through what you are.

Some are in total denial about their kid's diagnosis, some are very well adjusted and have faced this disease head on, and there are some in the middle as well.

And there are a bunch of CF adults here as well that can help you get perspective on what it's like to a CF patient, not just a parent.

I hope you find hope here <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

abcd12345

New member
Hi there,
Iv just read your entry and identifiy totally with how you feel right now! My daughter was diagnosed eight months ago with cystic fibrosis and she is just seven. My youngest daughter who is three years old has had a normal sweat test, we waited five weeks for that to be organised and the wait was pure hell, she is small like my eldest, and although she was essentially healthy(she was born with unrelated problems of her own) its easy to make comparrisons when your devastated! We try to take each day as it comes, not panic and live for the day, but there are times when my husband and I feel scared, and it is hard to imagine Annie's future and the effects of this nasty disease! Like you I regard my daughters as two little angels, they operate in the same way any other healthy children would do, and I suppose you've got to believe all this has happened for a reason, the bigger picture and all that! Anyway I wish you all the best, Cath Williams.
 
A

abcd12345

New member
Hi there,
Iv just read your entry and identifiy totally with how you feel right now! My daughter was diagnosed eight months ago with cystic fibrosis and she is just seven. My youngest daughter who is three years old has had a normal sweat test, we waited five weeks for that to be organised and the wait was pure hell, she is small like my eldest, and although she was essentially healthy(she was born with unrelated problems of her own) its easy to make comparrisons when your devastated! We try to take each day as it comes, not panic and live for the day, but there are times when my husband and I feel scared, and it is hard to imagine Annie's future and the effects of this nasty disease! Like you I regard my daughters as two little angels, they operate in the same way any other healthy children would do, and I suppose you've got to believe all this has happened for a reason, the bigger picture and all that! Anyway I wish you all the best, Cath Williams.
 
A

abcd12345

New member
Hi there,
Iv just read your entry and identifiy totally with how you feel right now! My daughter was diagnosed eight months ago with cystic fibrosis and she is just seven. My youngest daughter who is three years old has had a normal sweat test, we waited five weeks for that to be organised and the wait was pure hell, she is small like my eldest, and although she was essentially healthy(she was born with unrelated problems of her own) its easy to make comparrisons when your devastated! We try to take each day as it comes, not panic and live for the day, but there are times when my husband and I feel scared, and it is hard to imagine Annie's future and the effects of this nasty disease! Like you I regard my daughters as two little angels, they operate in the same way any other healthy children would do, and I suppose you've got to believe all this has happened for a reason, the bigger picture and all that! Anyway I wish you all the best, Cath Williams.
 
A

amysmom

New member
We have a daughter with CF, 25 years old. We went through the same things trying to adjust to the diagnosis and treatments, etc.. I don't think you should read too many things that don't specifically apply to you and your daughter's situations. I think exposing yourself to so many different possibilities dealing with CF will keep you from getting on with your life and establishing a normal childhood for your girls. The more you get involved with regular life, the quicker that agonizing, depressing feeling about CF will become a side issue in you and your daughter's lives.
 
A

amysmom

New member
We have a daughter with CF, 25 years old. We went through the same things trying to adjust to the diagnosis and treatments, etc.. I don't think you should read too many things that don't specifically apply to you and your daughter's situations. I think exposing yourself to so many different possibilities dealing with CF will keep you from getting on with your life and establishing a normal childhood for your girls. The more you get involved with regular life, the quicker that agonizing, depressing feeling about CF will become a side issue in you and your daughter's lives.
 
A

amysmom

New member
We have a daughter with CF, 25 years old. We went through the same things trying to adjust to the diagnosis and treatments, etc.. I don't think you should read too many things that don't specifically apply to you and your daughter's situations. I think exposing yourself to so many different possibilities dealing with CF will keep you from getting on with your life and establishing a normal childhood for your girls. The more you get involved with regular life, the quicker that agonizing, depressing feeling about CF will become a side issue in you and your daughter's lives.
 
L

LovingMommy

New member
Thank you all for the response, I feel a great sense of relief knowing that I finally have others that I can relate to, and look forward to learning more about everyone's experiences they have had with this disease. Again, thank you all and God bless!

Lisa
 
L

LovingMommy

New member
Thank you all for the response, I feel a great sense of relief knowing that I finally have others that I can relate to, and look forward to learning more about everyone's experiences they have had with this disease. Again, thank you all and God bless!

Lisa
 
L

LovingMommy

New member
Thank you all for the response, I feel a great sense of relief knowing that I finally have others that I can relate to, and look forward to learning more about everyone's experiences they have had with this disease. Again, thank you all and God bless!

Lisa
 
F

froggymama

New member
Lisa, My daughter was diagnosed over a year ago and I still have a hard time dealing with the reality of CF. It's just unfathomable to have a child with this disease, and it's not surprising you are still dealing with the emotions that come with that. I find solace in writing about it, talking to other moms and dads, putting my energy into raising money for CF, and this helps me feel like I'm taking control over an otherwise uncontrollable situation. And of course there is hope. Hope for that elusive cure, that I believe in my heart is only a few years away. In the mean time, I try to enjoy every moment and tell myself everyday that my child is a miracle and I am sooooo very lucky to be her mama! Peace. xoxo
 
F

froggymama

New member
Lisa, My daughter was diagnosed over a year ago and I still have a hard time dealing with the reality of CF. It's just unfathomable to have a child with this disease, and it's not surprising you are still dealing with the emotions that come with that. I find solace in writing about it, talking to other moms and dads, putting my energy into raising money for CF, and this helps me feel like I'm taking control over an otherwise uncontrollable situation. And of course there is hope. Hope for that elusive cure, that I believe in my heart is only a few years away. In the mean time, I try to enjoy every moment and tell myself everyday that my child is a miracle and I am sooooo very lucky to be her mama! Peace. xoxo
 
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