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

[GrammaofAutumn]

Hi everyone. My 3 and a half month old grand baby was just diagnosed on 11/16. I don't know where to go or what to do.
Autumn is still in the hospital. My daughter has been there at her side almost every minute. Autumn's father is there as well.
I'm so shocked and confused with this that I just don't know what to do. I have never in my 54 years known anyone with CF.
When my daughter called to tell me the diagnosis I just said, "what is it?" She told me that 10 years ago the life expectancy was 18. I said "what does that mean?" She was crying and couldn't talk so I hung up the phone and went to the Internet. I found out things that I didn't want to know.
I'm afraid, I feel helpless, I feel hollow inside like someone just ripped out my heart.
They will do more testing on Monday. A second sweat test. I'm not sure what else at this point.
I had to poor it out to someone. I'm sorry if I offended anyone here. That wasn't my intention.
I don't know what I'm looking for, I guess I'll figure that out when I find it.
Thanks to all who read this.

GrammaofAutumn

 

[GrammaofAutumn]

Hi everyone. My 3 and a half month old grand baby was just diagnosed on 11/16. I don't know where to go or what to do.
Autumn is still in the hospital. My daughter has been there at her side almost every minute. Autumn's father is there as well.
I'm so shocked and confused with this that I just don't know what to do. I have never in my 54 years known anyone with CF.
When my daughter called to tell me the diagnosis I just said, "what is it?" She told me that 10 years ago the life expectancy was 18. I said "what does that mean?" She was crying and couldn't talk so I hung up the phone and went to the Internet. I found out things that I didn't want to know.
I'm afraid, I feel helpless, I feel hollow inside like someone just ripped out my heart.
They will do more testing on Monday. A second sweat test. I'm not sure what else at this point.
I had to poor it out to someone. I'm sorry if I offended anyone here. That wasn't my intention.
I don't know what I'm looking for, I guess I'll figure that out when I find it.
Thanks to all who read this.

GrammaofAutumn

 

[GrammaofAutumn]

Hi everyone. My 3 and a half month old grand baby was just diagnosed on 11/16. I don't know where to go or what to do.
Autumn is still in the hospital. My daughter has been there at her side almost every minute. Autumn's father is there as well.
I'm so shocked and confused with this that I just don't know what to do. I have never in my 54 years known anyone with CF.
When my daughter called to tell me the diagnosis I just said, "what is it?" She told me that 10 years ago the life expectancy was 18. I said "what does that mean?" She was crying and couldn't talk so I hung up the phone and went to the Internet. I found out things that I didn't want to know.
I'm afraid, I feel helpless, I feel hollow inside like someone just ripped out my heart.
They will do more testing on Monday. A second sweat test. I'm not sure what else at this point.
I had to poor it out to someone. I'm sorry if I offended anyone here. That wasn't my intention.
I don't know what I'm looking for, I guess I'll figure that out when I find it.
Thanks to all who read this.

GrammaofAutumn

 

[GrammaofAutumn]

Hi everyone. My 3 and a half month old grand baby was just diagnosed on 11/16. I don't know where to go or what to do.
Autumn is still in the hospital. My daughter has been there at her side almost every minute. Autumn's father is there as well.
I'm so shocked and confused with this that I just don't know what to do. I have never in my 54 years known anyone with CF.
When my daughter called to tell me the diagnosis I just said, "what is it?" She told me that 10 years ago the life expectancy was 18. I said "what does that mean?" She was crying and couldn't talk so I hung up the phone and went to the Internet. I found out things that I didn't want to know.
I'm afraid, I feel helpless, I feel hollow inside like someone just ripped out my heart.
They will do more testing on Monday. A second sweat test. I'm not sure what else at this point.
I had to poor it out to someone. I'm sorry if I offended anyone here. That wasn't my intention.
I don't know what I'm looking for, I guess I'll figure that out when I find it.
Thanks to all who read this.

GrammaofAutumn

 

[GrammaofAutumn]

Hi everyone. My 3 and a half month old grand baby was just diagnosed on 11/16. I don't know where to go or what to do.
Autumn is still in the hospital. My daughter has been there at her side almost every minute. Autumn's father is there as well.
I'm so shocked and confused with this that I just don't know what to do. I have never in my 54 years known anyone with CF.
When my daughter called to tell me the diagnosis I just said, "what is it?" She told me that 10 years ago the life expectancy was 18. I said "what does that mean?" She was crying and couldn't talk so I hung up the phone and went to the Internet. I found out things that I didn't want to know.
I'm afraid, I feel helpless, I feel hollow inside like someone just ripped out my heart.
They will do more testing on Monday. A second sweat test. I'm not sure what else at this point.
I had to poor it out to someone. I'm sorry if I offended anyone here. That wasn't my intention.
I don't know what I'm looking for, I guess I'll figure that out when I find it.
Thanks to all who read this.

GrammaofAutumn

 

[JazzysMom]

First of all Congratulations on that Grandbaby!

Secondly dont try to take all the info about CF in. It doesnt all apply to everyone. Even if it did....your head would explode from all the info available.

IF your grand child has to have CF, Autumn is fortunate to have the advancement & early detection available today which has advanced the life expectancy greatly.

There is a dark side to CF, I wont lie. BUT there are many of us who have graduated high school, college, got married, bought homes and have children.

Its a lot to wrap your brain around so let me just say take one thing at a time. Write down your questions & come here frequently!

HUGS to you and your family!

 

[JazzysMom]

First of all Congratulations on that Grandbaby!

Secondly dont try to take all the info about CF in. It doesnt all apply to everyone. Even if it did....your head would explode from all the info available.

IF your grand child has to have CF, Autumn is fortunate to have the advancement & early detection available today which has advanced the life expectancy greatly.

There is a dark side to CF, I wont lie. BUT there are many of us who have graduated high school, college, got married, bought homes and have children.

Its a lot to wrap your brain around so let me just say take one thing at a time. Write down your questions & come here frequently!

HUGS to you and your family!

 

[JazzysMom]

First of all Congratulations on that Grandbaby!

Secondly dont try to take all the info about CF in. It doesnt all apply to everyone. Even if it did....your head would explode from all the info available.

IF your grand child has to have CF, Autumn is fortunate to have the advancement & early detection available today which has advanced the life expectancy greatly.

There is a dark side to CF, I wont lie. BUT there are many of us who have graduated high school, college, got married, bought homes and have children.

Its a lot to wrap your brain around so let me just say take one thing at a time. Write down your questions & come here frequently!

HUGS to you and your family!

 

[JazzysMom]

First of all Congratulations on that Grandbaby!

Secondly dont try to take all the info about CF in. It doesnt all apply to everyone. Even if it did....your head would explode from all the info available.

IF your grand child has to have CF, Autumn is fortunate to have the advancement & early detection available today which has advanced the life expectancy greatly.

There is a dark side to CF, I wont lie. BUT there are many of us who have graduated high school, college, got married, bought homes and have children.

Its a lot to wrap your brain around so let me just say take one thing at a time. Write down your questions & come here frequently!

HUGS to you and your family!

 

[JazzysMom]

First of all Congratulations on that Grandbaby!

Secondly dont try to take all the info about CF in. It doesnt all apply to everyone. Even if it did....your head would explode from all the info available.

IF your grand child has to have CF, Autumn is fortunate to have the advancement & early detection available today which has advanced the life expectancy greatly.

There is a dark side to CF, I wont lie. BUT there are many of us who have graduated high school, college, got married, bought homes and have children.

Its a lot to wrap your brain around so let me just say take one thing at a time. Write down your questions & come here frequently!

HUGS to you and your family!

 

[ktsmom]

Autumn is so lucky to have you! You will obviously be a great champion for her, and a huge source of care and comfort to your daughter as well.

As Melissa said, there is way too much information to absorb all at once. For now, maybe just think about the symptoms that led to her diagnosis and read about those.

I know from experience that these are very dark days, but please take hope in the great advances made in treatments. Please continue to come here for support and information from people who have been there. Best wishes to you and your family.

 

[ktsmom]

Autumn is so lucky to have you! You will obviously be a great champion for her, and a huge source of care and comfort to your daughter as well.

As Melissa said, there is way too much information to absorb all at once. For now, maybe just think about the symptoms that led to her diagnosis and read about those.

I know from experience that these are very dark days, but please take hope in the great advances made in treatments. Please continue to come here for support and information from people who have been there. Best wishes to you and your family.

 

[ktsmom]

Autumn is so lucky to have you! You will obviously be a great champion for her, and a huge source of care and comfort to your daughter as well.

As Melissa said, there is way too much information to absorb all at once. For now, maybe just think about the symptoms that led to her diagnosis and read about those.

I know from experience that these are very dark days, but please take hope in the great advances made in treatments. Please continue to come here for support and information from people who have been there. Best wishes to you and your family.

 

[ktsmom]

Autumn is so lucky to have you! You will obviously be a great champion for her, and a huge source of care and comfort to your daughter as well.

As Melissa said, there is way too much information to absorb all at once. For now, maybe just think about the symptoms that led to her diagnosis and read about those.

I know from experience that these are very dark days, but please take hope in the great advances made in treatments. Please continue to come here for support and information from people who have been there. Best wishes to you and your family.

 

[ktsmom]

Autumn is so lucky to have you! You will obviously be a great champion for her, and a huge source of care and comfort to your daughter as well.

As Melissa said, there is way too much information to absorb all at once. For now, maybe just think about the symptoms that led to her diagnosis and read about those.

I know from experience that these are very dark days, but please take hope in the great advances made in treatments. Please continue to come here for support and information from people who have been there. Best wishes to you and your family.

 

[Alyssa]

You have not offended anyone... just let it all out...that's what we are here for.

As others have said don't read too much - information is wonderful and you need to be informed but it is overwhelming and not everything out there is up to date or will apply to your grand child.

The symptoms, severity and the age of onset vary greatly with CF...some babies have problems right away, other's not until they are adults. You just have to wait and see what happens along the journey. My daughter started showing symptoms at age 5, my son not until 21 years old!

I'm so sorry you and your family are going through this. We've all been there. I didn't know what CF was either, and by and large most everyone on this site will tell you they had no family history either. It happens when both parents carry the CF gene.... each pregnancy has a one in four chance of getting both of those genes.

Try not to look back to the statistics...yes the median age used to be quite low...it is now up to 37 years of age and even that is not a great thing to focus on as it is just a statistic and it is "median" Math statistics can be a funny thing. Just be aware that many people with CF are living full and complete adults lives and I know of many in their 30's - 60's and even one who is 75 years old.... there is hope for a bright future for Autumn.

What are the problems Autumn is experiencing that put her in the hospital?

If there is anything else we can help you with, please just ask us.

 

[Alyssa]

You have not offended anyone... just let it all out...that's what we are here for.

As others have said don't read too much - information is wonderful and you need to be informed but it is overwhelming and not everything out there is up to date or will apply to your grand child.

The symptoms, severity and the age of onset vary greatly with CF...some babies have problems right away, other's not until they are adults. You just have to wait and see what happens along the journey. My daughter started showing symptoms at age 5, my son not until 21 years old!

I'm so sorry you and your family are going through this. We've all been there. I didn't know what CF was either, and by and large most everyone on this site will tell you they had no family history either. It happens when both parents carry the CF gene.... each pregnancy has a one in four chance of getting both of those genes.

Try not to look back to the statistics...yes the median age used to be quite low...it is now up to 37 years of age and even that is not a great thing to focus on as it is just a statistic and it is "median" Math statistics can be a funny thing. Just be aware that many people with CF are living full and complete adults lives and I know of many in their 30's - 60's and even one who is 75 years old.... there is hope for a bright future for Autumn.

What are the problems Autumn is experiencing that put her in the hospital?

If there is anything else we can help you with, please just ask us.

 

[Alyssa]

You have not offended anyone... just let it all out...that's what we are here for.

As others have said don't read too much - information is wonderful and you need to be informed but it is overwhelming and not everything out there is up to date or will apply to your grand child.

The symptoms, severity and the age of onset vary greatly with CF...some babies have problems right away, other's not until they are adults. You just have to wait and see what happens along the journey. My daughter started showing symptoms at age 5, my son not until 21 years old!

I'm so sorry you and your family are going through this. We've all been there. I didn't know what CF was either, and by and large most everyone on this site will tell you they had no family history either. It happens when both parents carry the CF gene.... each pregnancy has a one in four chance of getting both of those genes.

Try not to look back to the statistics...yes the median age used to be quite low...it is now up to 37 years of age and even that is not a great thing to focus on as it is just a statistic and it is "median" Math statistics can be a funny thing. Just be aware that many people with CF are living full and complete adults lives and I know of many in their 30's - 60's and even one who is 75 years old.... there is hope for a bright future for Autumn.

What are the problems Autumn is experiencing that put her in the hospital?

If there is anything else we can help you with, please just ask us.

 

[Alyssa]

You have not offended anyone... just let it all out...that's what we are here for.

As others have said don't read too much - information is wonderful and you need to be informed but it is overwhelming and not everything out there is up to date or will apply to your grand child.

The symptoms, severity and the age of onset vary greatly with CF...some babies have problems right away, other's not until they are adults. You just have to wait and see what happens along the journey. My daughter started showing symptoms at age 5, my son not until 21 years old!

I'm so sorry you and your family are going through this. We've all been there. I didn't know what CF was either, and by and large most everyone on this site will tell you they had no family history either. It happens when both parents carry the CF gene.... each pregnancy has a one in four chance of getting both of those genes.

Try not to look back to the statistics...yes the median age used to be quite low...it is now up to 37 years of age and even that is not a great thing to focus on as it is just a statistic and it is "median" Math statistics can be a funny thing. Just be aware that many people with CF are living full and complete adults lives and I know of many in their 30's - 60's and even one who is 75 years old.... there is hope for a bright future for Autumn.

What are the problems Autumn is experiencing that put her in the hospital?

If there is anything else we can help you with, please just ask us.

 

[Alyssa]

You have not offended anyone... just let it all out...that's what we are here for.

As others have said don't read too much - information is wonderful and you need to be informed but it is overwhelming and not everything out there is up to date or will apply to your grand child.

The symptoms, severity and the age of onset vary greatly with CF...some babies have problems right away, other's not until they are adults. You just have to wait and see what happens along the journey. My daughter started showing symptoms at age 5, my son not until 21 years old!

I'm so sorry you and your family are going through this. We've all been there. I didn't know what CF was either, and by and large most everyone on this site will tell you they had no family history either. It happens when both parents carry the CF gene.... each pregnancy has a one in four chance of getting both of those genes.

Try not to look back to the statistics...yes the median age used to be quite low...it is now up to 37 years of age and even that is not a great thing to focus on as it is just a statistic and it is "median" Math statistics can be a funny thing. Just be aware that many people with CF are living full and complete adults lives and I know of many in their 30's - 60's and even one who is 75 years old.... there is hope for a bright future for Autumn.

What are the problems Autumn is experiencing that put her in the hospital?

If there is anything else we can help you with, please just ask us.