New to site and CF

[Mommafirst]

Welcome Angela to a place that never in your wildest imagination you thought you'd need. I am so sorry for your son's diagnosis. It takes me back to our own beginnings with CF a mere year ago.

I hope you will see results quickly. I can't really answe your question, but make sure you make use of your CF nurse. She should be available to you to answer questions and help if you are feeling his meds aren't making much of a difference.

 

[Mommafirst]

Welcome Angela to a place that never in your wildest imagination you thought you'd need. I am so sorry for your son's diagnosis. It takes me back to our own beginnings with CF a mere year ago.

I hope you will see results quickly. I can't really answe your question, but make sure you make use of your CF nurse. She should be available to you to answer questions and help if you are feeling his meds aren't making much of a difference.

 

[Mommafirst]

Welcome Angela to a place that never in your wildest imagination you thought you'd need. I am so sorry for your son's diagnosis. It takes me back to our own beginnings with CF a mere year ago.

I hope you will see results quickly. I can't really answe your question, but make sure you make use of your CF nurse. She should be available to you to answer questions and help if you are feeling his meds aren't making much of a difference.

 

[Mommafirst]

Welcome Angela to a place that never in your wildest imagination you thought you'd need. I am so sorry for your son's diagnosis. It takes me back to our own beginnings with CF a mere year ago.

I hope you will see results quickly. I can't really answe your question, but make sure you make use of your CF nurse. She should be available to you to answer questions and help if you are feeling his meds aren't making much of a difference.

 

[Mommafirst]

Welcome Angela to a place that never in your wildest imagination you thought you'd need. I am so sorry for your son's diagnosis. It takes me back to our own beginnings with CF a mere year ago.

I hope you will see results quickly. I can't really answe your question, but make sure you make use of your CF nurse. She should be available to you to answer questions and help if you are feeling his meds aren't making much of a difference.

 

[Augustmom0003]

I, like the rest of those that have posted, have been where you are. It was the worst moment of my life and I'll never forget it. I felt alone and scared out of my mind. I never thought life would be "okay" again...that there would be this constant state of panic. It DOES take a little while...but you'll get there. In December, it will be four years since my son was diagnosed (I remember it like yesterday). He was also 3 months old. Ate and ate and ate...barely gained anything...had a bowel movement after each and every bottle...and then some...cried and cried...just an unhappy baby. I forced them to test him for CF (due to stools, amoung other signs (ie tasted salty). First test came back positive (a shock to everyone, including his pediatrician) Then he was taken to the ER (an ambulance picked us up from his ped's office), admitted, had pneumonia and RSV. Diagnosed with CF by the second sweat test and eventual genetic test (DDF508). While admitted, he started enzymes....a FEW DAYS later (after starting the enzymes), even though he'd barely eaten due to the RSV, he had gained...and was actually started looking CHUNKY! He was HAPPY...he was a NEW BABY! He started at the 10-15 percentile (compared to my daughter being in the 90's at his age) and by the time he was a year old, he was over 90%) I hope and pray that you get through this...and with time, patience, and support...I know you will.

 

[Augustmom0003]

I, like the rest of those that have posted, have been where you are. It was the worst moment of my life and I'll never forget it. I felt alone and scared out of my mind. I never thought life would be "okay" again...that there would be this constant state of panic. It DOES take a little while...but you'll get there. In December, it will be four years since my son was diagnosed (I remember it like yesterday). He was also 3 months old. Ate and ate and ate...barely gained anything...had a bowel movement after each and every bottle...and then some...cried and cried...just an unhappy baby. I forced them to test him for CF (due to stools, amoung other signs (ie tasted salty). First test came back positive (a shock to everyone, including his pediatrician) Then he was taken to the ER (an ambulance picked us up from his ped's office), admitted, had pneumonia and RSV. Diagnosed with CF by the second sweat test and eventual genetic test (DDF508). While admitted, he started enzymes....a FEW DAYS later (after starting the enzymes), even though he'd barely eaten due to the RSV, he had gained...and was actually started looking CHUNKY! He was HAPPY...he was a NEW BABY! He started at the 10-15 percentile (compared to my daughter being in the 90's at his age) and by the time he was a year old, he was over 90%) I hope and pray that you get through this...and with time, patience, and support...I know you will.

 

[Augustmom0003]

I, like the rest of those that have posted, have been where you are. It was the worst moment of my life and I'll never forget it. I felt alone and scared out of my mind. I never thought life would be "okay" again...that there would be this constant state of panic. It DOES take a little while...but you'll get there. In December, it will be four years since my son was diagnosed (I remember it like yesterday). He was also 3 months old. Ate and ate and ate...barely gained anything...had a bowel movement after each and every bottle...and then some...cried and cried...just an unhappy baby. I forced them to test him for CF (due to stools, amoung other signs (ie tasted salty). First test came back positive (a shock to everyone, including his pediatrician) Then he was taken to the ER (an ambulance picked us up from his ped's office), admitted, had pneumonia and RSV. Diagnosed with CF by the second sweat test and eventual genetic test (DDF508). While admitted, he started enzymes....a FEW DAYS later (after starting the enzymes), even though he'd barely eaten due to the RSV, he had gained...and was actually started looking CHUNKY! He was HAPPY...he was a NEW BABY! He started at the 10-15 percentile (compared to my daughter being in the 90's at his age) and by the time he was a year old, he was over 90%) I hope and pray that you get through this...and with time, patience, and support...I know you will.

 

[Augustmom0003]

I, like the rest of those that have posted, have been where you are. It was the worst moment of my life and I'll never forget it. I felt alone and scared out of my mind. I never thought life would be "okay" again...that there would be this constant state of panic. It DOES take a little while...but you'll get there. In December, it will be four years since my son was diagnosed (I remember it like yesterday). He was also 3 months old. Ate and ate and ate...barely gained anything...had a bowel movement after each and every bottle...and then some...cried and cried...just an unhappy baby. I forced them to test him for CF (due to stools, amoung other signs (ie tasted salty). First test came back positive (a shock to everyone, including his pediatrician) Then he was taken to the ER (an ambulance picked us up from his ped's office), admitted, had pneumonia and RSV. Diagnosed with CF by the second sweat test and eventual genetic test (DDF508). While admitted, he started enzymes....a FEW DAYS later (after starting the enzymes), even though he'd barely eaten due to the RSV, he had gained...and was actually started looking CHUNKY! He was HAPPY...he was a NEW BABY! He started at the 10-15 percentile (compared to my daughter being in the 90's at his age) and by the time he was a year old, he was over 90%) I hope and pray that you get through this...and with time, patience, and support...I know you will.

 

[Augustmom0003]

I, like the rest of those that have posted, have been where you are. It was the worst moment of my life and I'll never forget it. I felt alone and scared out of my mind. I never thought life would be "okay" again...that there would be this constant state of panic. It DOES take a little while...but you'll get there. In December, it will be four years since my son was diagnosed (I remember it like yesterday). He was also 3 months old. Ate and ate and ate...barely gained anything...had a bowel movement after each and every bottle...and then some...cried and cried...just an unhappy baby. I forced them to test him for CF (due to stools, amoung other signs (ie tasted salty). First test came back positive (a shock to everyone, including his pediatrician) Then he was taken to the ER (an ambulance picked us up from his ped's office), admitted, had pneumonia and RSV. Diagnosed with CF by the second sweat test and eventual genetic test (DDF508). While admitted, he started enzymes....a FEW DAYS later (after starting the enzymes), even though he'd barely eaten due to the RSV, he had gained...and was actually started looking CHUNKY! He was HAPPY...he was a NEW BABY! He started at the 10-15 percentile (compared to my daughter being in the 90's at his age) and by the time he was a year old, he was over 90%) I hope and pray that you get through this...and with time, patience, and support...I know you will.

 

[babyluke]

It makes me feel so much better to be able to read your stories. When we tell people that Luke has CF, we get a lot of pity but that is not what I need right now. I want to know that he can live as normal of a life as possible. I still feel very sad and very overwhelmed. My husband and I are also foster parents. We are currently caring for 5 other children. We have officially adopted one little boy and will most likely adopt the others too. We were told we could not get pregnant, so Luke is a miracle. I still feel that way and I want everyone else to know that we still cherish him as the greatest gift from God. I do feel overwhelmed, but I think it will get easier as I get used to it. I feel guilty for my other children. They think that "in a minute" is a flavor of juice now. But I can't help but think that it is good for them to learn compassion and patience at an early age.
Thanks for sharing your stories. I really need to hear them. We are having a weight check tomorrow, so I will keep you posted

Angela
mommy to Luke, 3mo. just diagnosed
also mommy to Tyler, Brady, Kyle, Isaiah and Zach

 

[babyluke]

It makes me feel so much better to be able to read your stories. When we tell people that Luke has CF, we get a lot of pity but that is not what I need right now. I want to know that he can live as normal of a life as possible. I still feel very sad and very overwhelmed. My husband and I are also foster parents. We are currently caring for 5 other children. We have officially adopted one little boy and will most likely adopt the others too. We were told we could not get pregnant, so Luke is a miracle. I still feel that way and I want everyone else to know that we still cherish him as the greatest gift from God. I do feel overwhelmed, but I think it will get easier as I get used to it. I feel guilty for my other children. They think that "in a minute" is a flavor of juice now. But I can't help but think that it is good for them to learn compassion and patience at an early age.
Thanks for sharing your stories. I really need to hear them. We are having a weight check tomorrow, so I will keep you posted

Angela
mommy to Luke, 3mo. just diagnosed
also mommy to Tyler, Brady, Kyle, Isaiah and Zach

 

[babyluke]

It makes me feel so much better to be able to read your stories. When we tell people that Luke has CF, we get a lot of pity but that is not what I need right now. I want to know that he can live as normal of a life as possible. I still feel very sad and very overwhelmed. My husband and I are also foster parents. We are currently caring for 5 other children. We have officially adopted one little boy and will most likely adopt the others too. We were told we could not get pregnant, so Luke is a miracle. I still feel that way and I want everyone else to know that we still cherish him as the greatest gift from God. I do feel overwhelmed, but I think it will get easier as I get used to it. I feel guilty for my other children. They think that "in a minute" is a flavor of juice now. But I can't help but think that it is good for them to learn compassion and patience at an early age.
Thanks for sharing your stories. I really need to hear them. We are having a weight check tomorrow, so I will keep you posted

Angela
mommy to Luke, 3mo. just diagnosed
also mommy to Tyler, Brady, Kyle, Isaiah and Zach

 

[babyluke]

It makes me feel so much better to be able to read your stories. When we tell people that Luke has CF, we get a lot of pity but that is not what I need right now. I want to know that he can live as normal of a life as possible. I still feel very sad and very overwhelmed. My husband and I are also foster parents. We are currently caring for 5 other children. We have officially adopted one little boy and will most likely adopt the others too. We were told we could not get pregnant, so Luke is a miracle. I still feel that way and I want everyone else to know that we still cherish him as the greatest gift from God. I do feel overwhelmed, but I think it will get easier as I get used to it. I feel guilty for my other children. They think that "in a minute" is a flavor of juice now. But I can't help but think that it is good for them to learn compassion and patience at an early age.
Thanks for sharing your stories. I really need to hear them. We are having a weight check tomorrow, so I will keep you posted

Angela
mommy to Luke, 3mo. just diagnosed
also mommy to Tyler, Brady, Kyle, Isaiah and Zach

 

[babyluke]

It makes me feel so much better to be able to read your stories. When we tell people that Luke has CF, we get a lot of pity but that is not what I need right now. I want to know that he can live as normal of a life as possible. I still feel very sad and very overwhelmed. My husband and I are also foster parents. We are currently caring for 5 other children. We have officially adopted one little boy and will most likely adopt the others too. We were told we could not get pregnant, so Luke is a miracle. I still feel that way and I want everyone else to know that we still cherish him as the greatest gift from God. I do feel overwhelmed, but I think it will get easier as I get used to it. I feel guilty for my other children. They think that "in a minute" is a flavor of juice now. But I can't help but think that it is good for them to learn compassion and patience at an early age.
Thanks for sharing your stories. I really need to hear them. We are having a weight check tomorrow, so I will keep you posted

Angela
mommy to Luke, 3mo. just diagnosed
also mommy to Tyler, Brady, Kyle, Isaiah and Zach

 

[Rebjane]

welcome to this site. I am sorry for your son's CF diagnosis but with the proper treatment your son will feel better. I hope the weight check goes well. Make sure if someone offers to help you; like family, take the help. It's ok. Ask questions. One doc said to me"Knowledge is power". Just know that there is some outdated info on CF out there, on the internet and even from some docs. The Cystic Fibrosis Foundation has reliable info at www.cff.org. Wish I had more time to post, gotta pick up my daughter from nursery school.

Take care!

 

[Rebjane]

welcome to this site. I am sorry for your son's CF diagnosis but with the proper treatment your son will feel better. I hope the weight check goes well. Make sure if someone offers to help you; like family, take the help. It's ok. Ask questions. One doc said to me"Knowledge is power". Just know that there is some outdated info on CF out there, on the internet and even from some docs. The Cystic Fibrosis Foundation has reliable info at www.cff.org. Wish I had more time to post, gotta pick up my daughter from nursery school.

Take care!

 

[Rebjane]

welcome to this site. I am sorry for your son's CF diagnosis but with the proper treatment your son will feel better. I hope the weight check goes well. Make sure if someone offers to help you; like family, take the help. It's ok. Ask questions. One doc said to me"Knowledge is power". Just know that there is some outdated info on CF out there, on the internet and even from some docs. The Cystic Fibrosis Foundation has reliable info at www.cff.org. Wish I had more time to post, gotta pick up my daughter from nursery school.

Take care!

 

[Rebjane]

welcome to this site. I am sorry for your son's CF diagnosis but with the proper treatment your son will feel better. I hope the weight check goes well. Make sure if someone offers to help you; like family, take the help. It's ok. Ask questions. One doc said to me"Knowledge is power". Just know that there is some outdated info on CF out there, on the internet and even from some docs. The Cystic Fibrosis Foundation has reliable info at www.cff.org. Wish I had more time to post, gotta pick up my daughter from nursery school.

Take care!

 

[Rebjane]

welcome to this site. I am sorry for your son's CF diagnosis but with the proper treatment your son will feel better. I hope the weight check goes well. Make sure if someone offers to help you; like family, take the help. It's ok. Ask questions. One doc said to me"Knowledge is power". Just know that there is some outdated info on CF out there, on the internet and even from some docs. The Cystic Fibrosis Foundation has reliable info at www.cff.org. Wish I had more time to post, gotta pick up my daughter from nursery school.

Take care!