I feel like they have given my daughter a death sentence

mom4holly · Feb 2, 2008

I just want to let you know that you are not alone & if you have any questions please feel free to ask away. Also, my only advice would be the same as Dana (KTSMOM) above, please be careful what you read on the internet-it can be scary & outdated--I'm not saying it's all wrong but a lot of it just made it worse for me.

Keep us posted on her progress & how she is doing. Just breathe, try to relax if that is possible. I know that is a lot easier said than done.

mom4holly · Feb 2, 2008

I just want to let you know that you are not alone & if you have any questions please feel free to ask away. Also, my only advice would be the same as Dana (KTSMOM) above, please be careful what you read on the internet-it can be scary & outdated--I'm not saying it's all wrong but a lot of it just made it worse for me.

Keep us posted on her progress & how she is doing. Just breathe, try to relax if that is possible. I know that is a lot easier said than done.

mom4holly · Feb 2, 2008

I just want to let you know that you are not alone & if you have any questions please feel free to ask away. Also, my only advice would be the same as Dana (KTSMOM) above, please be careful what you read on the internet-it can be scary & outdated--I'm not saying it's all wrong but a lot of it just made it worse for me.

Keep us posted on her progress & how she is doing. Just breathe, try to relax if that is possible. I know that is a lot easier said than done.

mom4holly · Feb 2, 2008

I just want to let you know that you are not alone & if you have any questions please feel free to ask away. Also, my only advice would be the same as Dana (KTSMOM) above, please be careful what you read on the internet-it can be scary & outdated--I'm not saying it's all wrong but a lot of it just made it worse for me.

Keep us posted on her progress & how she is doing. Just breathe, try to relax if that is possible. I know that is a lot easier said than done.

mom4holly · Feb 2, 2008

I just want to let you know that you are not alone & if you have any questions please feel free to ask away. Also, my only advice would be the same as Dana (KTSMOM) above, please be careful what you read on the internet-it can be scary & outdated--I'm not saying it's all wrong but a lot of it just made it worse for me.

Keep us posted on her progress & how she is doing. Just breathe, try to relax if that is possible. I know that is a lot easier said than done.

Alyssa · Feb 2, 2008

Ditto to all the other posts and welcome! I too just wanted to point out that it is far more likely your daughter's health will now improve after getting the correct diagnosis and treatments.... also wanted to point out that there are many living with CF even older than what others have posted here, I chat with several people in their 60's and 70's on cystic-L.com

Hang in there! Feel free to lean on us -- we are all in this together!

Alyssa · Feb 2, 2008

Ditto to all the other posts and welcome! I too just wanted to point out that it is far more likely your daughter's health will now improve after getting the correct diagnosis and treatments.... also wanted to point out that there are many living with CF even older than what others have posted here, I chat with several people in their 60's and 70's on cystic-L.com

Hang in there! Feel free to lean on us -- we are all in this together!

Alyssa · Feb 2, 2008

Ditto to all the other posts and welcome! I too just wanted to point out that it is far more likely your daughter's health will now improve after getting the correct diagnosis and treatments.... also wanted to point out that there are many living with CF even older than what others have posted here, I chat with several people in their 60's and 70's on cystic-L.com

Hang in there! Feel free to lean on us -- we are all in this together!

Alyssa · Feb 2, 2008

Ditto to all the other posts and welcome! I too just wanted to point out that it is far more likely your daughter's health will now improve after getting the correct diagnosis and treatments.... also wanted to point out that there are many living with CF even older than what others have posted here, I chat with several people in their 60's and 70's on cystic-L.com

Hang in there! Feel free to lean on us -- we are all in this together!

Alyssa · Feb 2, 2008

Ditto to all the other posts and welcome! I too just wanted to point out that it is far more likely your daughter's health will now improve after getting the correct diagnosis and treatments.... also wanted to point out that there are many living with CF even older than what others have posted here, I chat with several people in their 60's and 70's on cystic-L.com

Hang in there! Feel free to lean on us -- we are all in this together!

shimmereestar · Feb 3, 2008

She began enzymes about two weeks ago (before we received a diagnosis) she is gaining weight slowly. They have also been giving her multivitamins, vitamin e, augmentin (for a staph infection), prevacid and regalan. During one of the studies they also found she had full column reflux. She is just as cute as can be and by looking at her you can't imagine she has all this going on. She is such a happy baby. She has discovered her hands and tongue. Sometimes it just doesn't seem real. We go back to the pulmonoligist next week and we are also seeing a hematoligist next week (due to her anemia). She's a trooper, it's me who's trying to hang in there.

shimmereestar · Feb 3, 2008

She began enzymes about two weeks ago (before we received a diagnosis) she is gaining weight slowly. They have also been giving her multivitamins, vitamin e, augmentin (for a staph infection), prevacid and regalan. During one of the studies they also found she had full column reflux. She is just as cute as can be and by looking at her you can't imagine she has all this going on. She is such a happy baby. She has discovered her hands and tongue. Sometimes it just doesn't seem real. We go back to the pulmonoligist next week and we are also seeing a hematoligist next week (due to her anemia). She's a trooper, it's me who's trying to hang in there.

shimmereestar · Feb 3, 2008

She began enzymes about two weeks ago (before we received a diagnosis) she is gaining weight slowly. They have also been giving her multivitamins, vitamin e, augmentin (for a staph infection), prevacid and regalan. During one of the studies they also found she had full column reflux. She is just as cute as can be and by looking at her you can't imagine she has all this going on. She is such a happy baby. She has discovered her hands and tongue. Sometimes it just doesn't seem real. We go back to the pulmonoligist next week and we are also seeing a hematoligist next week (due to her anemia). She's a trooper, it's me who's trying to hang in there.

shimmereestar · Feb 3, 2008

She began enzymes about two weeks ago (before we received a diagnosis) she is gaining weight slowly. They have also been giving her multivitamins, vitamin e, augmentin (for a staph infection), prevacid and regalan. During one of the studies they also found she had full column reflux. She is just as cute as can be and by looking at her you can't imagine she has all this going on. She is such a happy baby. She has discovered her hands and tongue. Sometimes it just doesn't seem real. We go back to the pulmonoligist next week and we are also seeing a hematoligist next week (due to her anemia). She's a trooper, it's me who's trying to hang in there.

shimmereestar · Feb 3, 2008

She began enzymes about two weeks ago (before we received a diagnosis) she is gaining weight slowly. They have also been giving her multivitamins, vitamin e, augmentin (for a staph infection), prevacid and regalan. During one of the studies they also found she had full column reflux. She is just as cute as can be and by looking at her you can't imagine she has all this going on. She is such a happy baby. She has discovered her hands and tongue. Sometimes it just doesn't seem real. We go back to the pulmonoligist next week and we are also seeing a hematoligist next week (due to her anemia). She's a trooper, it's me who's trying to hang in there.

paugh22 · Feb 3, 2008