I don't know where to start.......

[HollyAnnsMom]

Congratulations are in order for sure. Hope we can all be of assistance to you and your family. Our little girl was diagnosed on 8/20/07 at 5 weeks of age after a positive newborn screening. I also went straight to my computer and started reading and became very scared. I found this website and all of the positive info as well. My husband and I grew up with a friend who had CF and I also had a friend from high school thats son is 4 and has CF. My grandma did not know anything about CF and she went to the library and checked out a really simple book on CF that explained everything without scaring her to death. I think that so many times people focus on the negative and forget to look to the positive like all of the treatments available today and the ability of early detection. I must admit that there are days I still cry and become frustrated but those are fewer and fewer now. I also know that Holly Ann will have some battles to fight but she sure has a lot of folks on her team. God bless you and your family and let me know if you need anything.

 

[HollyAnnsMom]

Congratulations are in order for sure. Hope we can all be of assistance to you and your family. Our little girl was diagnosed on 8/20/07 at 5 weeks of age after a positive newborn screening. I also went straight to my computer and started reading and became very scared. I found this website and all of the positive info as well. My husband and I grew up with a friend who had CF and I also had a friend from high school thats son is 4 and has CF. My grandma did not know anything about CF and she went to the library and checked out a really simple book on CF that explained everything without scaring her to death. I think that so many times people focus on the negative and forget to look to the positive like all of the treatments available today and the ability of early detection. I must admit that there are days I still cry and become frustrated but those are fewer and fewer now. I also know that Holly Ann will have some battles to fight but she sure has a lot of folks on her team. God bless you and your family and let me know if you need anything.

 

[HollyAnnsMom]

Congratulations are in order for sure. Hope we can all be of assistance to you and your family. Our little girl was diagnosed on 8/20/07 at 5 weeks of age after a positive newborn screening. I also went straight to my computer and started reading and became very scared. I found this website and all of the positive info as well. My husband and I grew up with a friend who had CF and I also had a friend from high school thats son is 4 and has CF. My grandma did not know anything about CF and she went to the library and checked out a really simple book on CF that explained everything without scaring her to death. I think that so many times people focus on the negative and forget to look to the positive like all of the treatments available today and the ability of early detection. I must admit that there are days I still cry and become frustrated but those are fewer and fewer now. I also know that Holly Ann will have some battles to fight but she sure has a lot of folks on her team. God bless you and your family and let me know if you need anything.

 

[HollyAnnsMom]

Congratulations are in order for sure. Hope we can all be of assistance to you and your family. Our little girl was diagnosed on 8/20/07 at 5 weeks of age after a positive newborn screening. I also went straight to my computer and started reading and became very scared. I found this website and all of the positive info as well. My husband and I grew up with a friend who had CF and I also had a friend from high school thats son is 4 and has CF. My grandma did not know anything about CF and she went to the library and checked out a really simple book on CF that explained everything without scaring her to death. I think that so many times people focus on the negative and forget to look to the positive like all of the treatments available today and the ability of early detection. I must admit that there are days I still cry and become frustrated but those are fewer and fewer now. I also know that Holly Ann will have some battles to fight but she sure has a lot of folks on her team. God bless you and your family and let me know if you need anything.

 

[HollyAnnsMom]

Congratulations are in order for sure. Hope we can all be of assistance to you and your family. Our little girl was diagnosed on 8/20/07 at 5 weeks of age after a positive newborn screening. I also went straight to my computer and started reading and became very scared. I found this website and all of the positive info as well. My husband and I grew up with a friend who had CF and I also had a friend from high school thats son is 4 and has CF. My grandma did not know anything about CF and she went to the library and checked out a really simple book on CF that explained everything without scaring her to death. I think that so many times people focus on the negative and forget to look to the positive like all of the treatments available today and the ability of early detection. I must admit that there are days I still cry and become frustrated but those are fewer and fewer now. I also know that Holly Ann will have some battles to fight but she sure has a lot of folks on her team. God bless you and your family and let me know if you need anything.

 

[froggymama]

Someone told me when our daughter was diagnosed over a year ago, that someday our lives would return to normal. Not the normal, we were used to, but normal nonetheless. That was important for me to hear, because I remember feeling so completely surreal and that nothing in life would ever be okay again. My daughter is now 27 months and the JOY JOY JOY of our lives. She's healthy, vibrant, endearing, wonderful, and even though sometimes life is tough and the realities of CF hit like a ton of bricks, somehow in her toddler way, she reminds us that we are just a normal family, stressed about potty training and 2-year-old tantrums, and the love that she gives so completely makes up for the hours on the phone with insurance companies, and the respiratory treatments, and the worry we will always have. You'll be okay, you'll survive this. It's a different time for CF, and the treatments and new drugs in the pipeline are hopefull. And you've found a great community of people who care and understand. Good luck to you and you're family. xoxo Elise

 

[froggymama]

Someone told me when our daughter was diagnosed over a year ago, that someday our lives would return to normal. Not the normal, we were used to, but normal nonetheless. That was important for me to hear, because I remember feeling so completely surreal and that nothing in life would ever be okay again. My daughter is now 27 months and the JOY JOY JOY of our lives. She's healthy, vibrant, endearing, wonderful, and even though sometimes life is tough and the realities of CF hit like a ton of bricks, somehow in her toddler way, she reminds us that we are just a normal family, stressed about potty training and 2-year-old tantrums, and the love that she gives so completely makes up for the hours on the phone with insurance companies, and the respiratory treatments, and the worry we will always have. You'll be okay, you'll survive this. It's a different time for CF, and the treatments and new drugs in the pipeline are hopefull. And you've found a great community of people who care and understand. Good luck to you and you're family. xoxo Elise

 

[froggymama]

Someone told me when our daughter was diagnosed over a year ago, that someday our lives would return to normal. Not the normal, we were used to, but normal nonetheless. That was important for me to hear, because I remember feeling so completely surreal and that nothing in life would ever be okay again. My daughter is now 27 months and the JOY JOY JOY of our lives. She's healthy, vibrant, endearing, wonderful, and even though sometimes life is tough and the realities of CF hit like a ton of bricks, somehow in her toddler way, she reminds us that we are just a normal family, stressed about potty training and 2-year-old tantrums, and the love that she gives so completely makes up for the hours on the phone with insurance companies, and the respiratory treatments, and the worry we will always have. You'll be okay, you'll survive this. It's a different time for CF, and the treatments and new drugs in the pipeline are hopefull. And you've found a great community of people who care and understand. Good luck to you and you're family. xoxo Elise

 

[froggymama]

Someone told me when our daughter was diagnosed over a year ago, that someday our lives would return to normal. Not the normal, we were used to, but normal nonetheless. That was important for me to hear, because I remember feeling so completely surreal and that nothing in life would ever be okay again. My daughter is now 27 months and the JOY JOY JOY of our lives. She's healthy, vibrant, endearing, wonderful, and even though sometimes life is tough and the realities of CF hit like a ton of bricks, somehow in her toddler way, she reminds us that we are just a normal family, stressed about potty training and 2-year-old tantrums, and the love that she gives so completely makes up for the hours on the phone with insurance companies, and the respiratory treatments, and the worry we will always have. You'll be okay, you'll survive this. It's a different time for CF, and the treatments and new drugs in the pipeline are hopefull. And you've found a great community of people who care and understand. Good luck to you and you're family. xoxo Elise

 

[froggymama]

Someone told me when our daughter was diagnosed over a year ago, that someday our lives would return to normal. Not the normal, we were used to, but normal nonetheless. That was important for me to hear, because I remember feeling so completely surreal and that nothing in life would ever be okay again. My daughter is now 27 months and the JOY JOY JOY of our lives. She's healthy, vibrant, endearing, wonderful, and even though sometimes life is tough and the realities of CF hit like a ton of bricks, somehow in her toddler way, she reminds us that we are just a normal family, stressed about potty training and 2-year-old tantrums, and the love that she gives so completely makes up for the hours on the phone with insurance companies, and the respiratory treatments, and the worry we will always have. You'll be okay, you'll survive this. It's a different time for CF, and the treatments and new drugs in the pipeline are hopefull. And you've found a great community of people who care and understand. Good luck to you and you're family. xoxo Elise

 

[trinitycf]

Hi!! Grandmom

Congratulation on your grandbaby!!

I know exactly what you are going through. My oldest daughters were just diagnosis with CF. My oldest daugher was diagnosis first in 8/07 and my middle daughter10/07. I'm so confused on all the things CF can do. The doctor's are saying learn all you can about the disease but it's hard when you really don't know where to start. So I thought it would be great to talk to someone who's going through the same thing I'm going through. I cried and cried and cried some more because I could not believe that it was both of my daughters. So I feel your pain. It was so crazy about our diagnosis is my children are African American. The doctor said, that It is rare for blacks to have CF, and that's what took so long to get a diagnosis on my oldest daughter who had pancreatist. I do feel a little bit better knowing what to pray about.

 

[trinitycf]

Hi!! Grandmom

Congratulation on your grandbaby!!

I know exactly what you are going through. My oldest daughters were just diagnosis with CF. My oldest daugher was diagnosis first in 8/07 and my middle daughter10/07. I'm so confused on all the things CF can do. The doctor's are saying learn all you can about the disease but it's hard when you really don't know where to start. So I thought it would be great to talk to someone who's going through the same thing I'm going through. I cried and cried and cried some more because I could not believe that it was both of my daughters. So I feel your pain. It was so crazy about our diagnosis is my children are African American. The doctor said, that It is rare for blacks to have CF, and that's what took so long to get a diagnosis on my oldest daughter who had pancreatist. I do feel a little bit better knowing what to pray about.

 

[trinitycf]

Hi!! Grandmom

Congratulation on your grandbaby!!

I know exactly what you are going through. My oldest daughters were just diagnosis with CF. My oldest daugher was diagnosis first in 8/07 and my middle daughter10/07. I'm so confused on all the things CF can do. The doctor's are saying learn all you can about the disease but it's hard when you really don't know where to start. So I thought it would be great to talk to someone who's going through the same thing I'm going through. I cried and cried and cried some more because I could not believe that it was both of my daughters. So I feel your pain. It was so crazy about our diagnosis is my children are African American. The doctor said, that It is rare for blacks to have CF, and that's what took so long to get a diagnosis on my oldest daughter who had pancreatist. I do feel a little bit better knowing what to pray about.

 

[trinitycf]

Hi!! Grandmom

Congratulation on your grandbaby!!

I know exactly what you are going through. My oldest daughters were just diagnosis with CF. My oldest daugher was diagnosis first in 8/07 and my middle daughter10/07. I'm so confused on all the things CF can do. The doctor's are saying learn all you can about the disease but it's hard when you really don't know where to start. So I thought it would be great to talk to someone who's going through the same thing I'm going through. I cried and cried and cried some more because I could not believe that it was both of my daughters. So I feel your pain. It was so crazy about our diagnosis is my children are African American. The doctor said, that It is rare for blacks to have CF, and that's what took so long to get a diagnosis on my oldest daughter who had pancreatist. I do feel a little bit better knowing what to pray about.

 

[trinitycf]

Hi!! Grandmom

Congratulation on your grandbaby!!

I know exactly what you are going through. My oldest daughters were just diagnosis with CF. My oldest daugher was diagnosis first in 8/07 and my middle daughter10/07. I'm so confused on all the things CF can do. The doctor's are saying learn all you can about the disease but it's hard when you really don't know where to start. So I thought it would be great to talk to someone who's going through the same thing I'm going through. I cried and cried and cried some more because I could not believe that it was both of my daughters. So I feel your pain. It was so crazy about our diagnosis is my children are African American. The doctor said, that It is rare for blacks to have CF, and that's what took so long to get a diagnosis on my oldest daughter who had pancreatist. I do feel a little bit better knowing what to pray about.

 

[Alyssa]

<b>trinitycf</b>

Maria,

Did you get genetic testing on your girls? Do you know what their mutations are - just curious, since I have read that it is very rare in African Americans -- just curious what genes they have.

Glad to hear you did eventually get the correct diagnosis - I know it is very frustrating to not know what's going on for sure.

 

[Alyssa]

<b>trinitycf</b>

Maria,

Did you get genetic testing on your girls? Do you know what their mutations are - just curious, since I have read that it is very rare in African Americans -- just curious what genes they have.

Glad to hear you did eventually get the correct diagnosis - I know it is very frustrating to not know what's going on for sure.

 

[Alyssa]

<b>trinitycf</b>

Maria,

Did you get genetic testing on your girls? Do you know what their mutations are - just curious, since I have read that it is very rare in African Americans -- just curious what genes they have.

Glad to hear you did eventually get the correct diagnosis - I know it is very frustrating to not know what's going on for sure.

 

[Alyssa]

<b>trinitycf</b>

Maria,

Did you get genetic testing on your girls? Do you know what their mutations are - just curious, since I have read that it is very rare in African Americans -- just curious what genes they have.

Glad to hear you did eventually get the correct diagnosis - I know it is very frustrating to not know what's going on for sure.

 

[Alyssa]

<b>trinitycf</b>

Maria,

Did you get genetic testing on your girls? Do you know what their mutations are - just curious, since I have read that it is very rare in African Americans -- just curious what genes they have.

Glad to hear you did eventually get the correct diagnosis - I know it is very frustrating to not know what's going on for sure.