STILL COPING

mommy2diego · Jan 19, 2009

My son is 6 months old, also diagnosed through newborn screening. He just cultured staph aureus as well, although he was already culturing pseudomonas at 4 months. he is on tobi to treat that. I know its' hard. you have good days and bad...i also just found out my 4 and 5 year old have cf as well.... 2008 was not that great of a year for me... :0) but, we are moving forward and i'm choosing to deal with this a day at time. this site is a tremendous help, as you'll find most people even family don't know how to react and aren't as supportive as you'd like. most people, including myself never hear of cf until somebody close to them is affected. I'm not much further in the coping then you, but i feel your greif, worries all the same. we're in the same boat. feel free to message me. our kids are only a couple months apart. take care and hang in there...

mommy2diego · Jan 19, 2009

My son is 6 months old, also diagnosed through newborn screening. He just cultured staph aureus as well, although he was already culturing pseudomonas at 4 months. he is on tobi to treat that. I know its' hard. you have good days and bad...i also just found out my 4 and 5 year old have cf as well.... 2008 was not that great of a year for me... :0) but, we are moving forward and i'm choosing to deal with this a day at time. this site is a tremendous help, as you'll find most people even family don't know how to react and aren't as supportive as you'd like. most people, including myself never hear of cf until somebody close to them is affected. I'm not much further in the coping then you, but i feel your greif, worries all the same. we're in the same boat. feel free to message me. our kids are only a couple months apart. take care and hang in there...

mommy2diego · Jan 19, 2009

My son is 6 months old, also diagnosed through newborn screening. He just cultured staph aureus as well, although he was already culturing pseudomonas at 4 months. he is on tobi to treat that. I know its' hard. you have good days and bad...i also just found out my 4 and 5 year old have cf as well.... 2008 was not that great of a year for me... :0) but, we are moving forward and i'm choosing to deal with this a day at time. this site is a tremendous help, as you'll find most people even family don't know how to react and aren't as supportive as you'd like. most people, including myself never hear of cf until somebody close to them is affected. I'm not much further in the coping then you, but i feel your greif, worries all the same. we're in the same boat. feel free to message me. our kids are only a couple months apart. take care and hang in there...

mommy2diego · Jan 19, 2009

My son is 6 months old, also diagnosed through newborn screening. He just cultured staph aureus as well, although he was already culturing pseudomonas at 4 months. he is on tobi to treat that. I know its' hard. you have good days and bad...i also just found out my 4 and 5 year old have cf as well.... 2008 was not that great of a year for me... :0) but, we are moving forward and i'm choosing to deal with this a day at time. this site is a tremendous help, as you'll find most people even family don't know how to react and aren't as supportive as you'd like. most people, including myself never hear of cf until somebody close to them is affected. I'm not much further in the coping then you, but i feel your greif, worries all the same. we're in the same boat. feel free to message me. our kids are only a couple months apart. take care and hang in there...

mommy2diego · Jan 19, 2009

My son is 6 months old, also diagnosed through newborn screening. He just cultured staph aureus as well, although he was already culturing pseudomonas at 4 months. he is on tobi to treat that. I know its' hard. you have good days and bad...i also just found out my 4 and 5 year old have cf as well.... 2008 was not that great of a year for me... :0) but, we are moving forward and i'm choosing to deal with this a day at time. this site is a tremendous help, as you'll find most people even family don't know how to react and aren't as supportive as you'd like. most people, including myself never hear of cf until somebody close to them is affected. I'm not much further in the coping then you, but i feel your greif, worries all the same. we're in the same boat. feel free to message me. our kids are only a couple months apart. take care and hang in there...

MYBOY · Jan 20, 2009

Oh my - Mommytodiego - I'm overwhelmed just reading that! I can't imagine what you all went through! I cried for 4 days after my son was diagnosed at 6 months old. Now my son is 11 - is really pretty healthy (hasn't missed a day of school for sickness in years) and is very active. So it does make it easier for now. The wondering what is going to happen and when is probably the hardest part. There isn't a day that goes by that you don't think about CF and why it had to be your kid!! And when they ask you "why do I have to have CF, take all these pills and do treatments" it can tear you apart inside. But my son also has a kid in his class with MD - in a wheelchair - so it does help him see the bright side of things. If he couldn't play baseball, basketball and football it would devastate him and us. Right now he can play a whole game of basketball and hardly be winded at the end. I just know when your kids are so young it's hard to imagine what's to come - but keep them as active as they can - and keep praying for the best as they get older. It scares me to keep reading about all the people that started having more problems as they hit teens and twenties - so I'm just counting our blessings everyday. I wish you all luck and hope you can find a way to deal with this - we just love our kids soooo much

MYBOY · Jan 20, 2009

Oh my - Mommytodiego - I'm overwhelmed just reading that! I can't imagine what you all went through! I cried for 4 days after my son was diagnosed at 6 months old. Now my son is 11 - is really pretty healthy (hasn't missed a day of school for sickness in years) and is very active. So it does make it easier for now. The wondering what is going to happen and when is probably the hardest part. There isn't a day that goes by that you don't think about CF and why it had to be your kid!! And when they ask you "why do I have to have CF, take all these pills and do treatments" it can tear you apart inside. But my son also has a kid in his class with MD - in a wheelchair - so it does help him see the bright side of things. If he couldn't play baseball, basketball and football it would devastate him and us. Right now he can play a whole game of basketball and hardly be winded at the end. I just know when your kids are so young it's hard to imagine what's to come - but keep them as active as they can - and keep praying for the best as they get older. It scares me to keep reading about all the people that started having more problems as they hit teens and twenties - so I'm just counting our blessings everyday. I wish you all luck and hope you can find a way to deal with this - we just love our kids soooo much

MYBOY · Jan 20, 2009

Oh my - Mommytodiego - I'm overwhelmed just reading that! I can't imagine what you all went through! I cried for 4 days after my son was diagnosed at 6 months old. Now my son is 11 - is really pretty healthy (hasn't missed a day of school for sickness in years) and is very active. So it does make it easier for now. The wondering what is going to happen and when is probably the hardest part. There isn't a day that goes by that you don't think about CF and why it had to be your kid!! And when they ask you "why do I have to have CF, take all these pills and do treatments" it can tear you apart inside. But my son also has a kid in his class with MD - in a wheelchair - so it does help him see the bright side of things. If he couldn't play baseball, basketball and football it would devastate him and us. Right now he can play a whole game of basketball and hardly be winded at the end. I just know when your kids are so young it's hard to imagine what's to come - but keep them as active as they can - and keep praying for the best as they get older. It scares me to keep reading about all the people that started having more problems as they hit teens and twenties - so I'm just counting our blessings everyday. I wish you all luck and hope you can find a way to deal with this - we just love our kids soooo much

MYBOY · Jan 20, 2009

Oh my - Mommytodiego - I'm overwhelmed just reading that! I can't imagine what you all went through! I cried for 4 days after my son was diagnosed at 6 months old. Now my son is 11 - is really pretty healthy (hasn't missed a day of school for sickness in years) and is very active. So it does make it easier for now. The wondering what is going to happen and when is probably the hardest part. There isn't a day that goes by that you don't think about CF and why it had to be your kid!! And when they ask you "why do I have to have CF, take all these pills and do treatments" it can tear you apart inside. But my son also has a kid in his class with MD - in a wheelchair - so it does help him see the bright side of things. If he couldn't play baseball, basketball and football it would devastate him and us. Right now he can play a whole game of basketball and hardly be winded at the end. I just know when your kids are so young it's hard to imagine what's to come - but keep them as active as they can - and keep praying for the best as they get older. It scares me to keep reading about all the people that started having more problems as they hit teens and twenties - so I'm just counting our blessings everyday. I wish you all luck and hope you can find a way to deal with this - we just love our kids soooo much

MYBOY · Jan 20, 2009

Oh my - Mommytodiego - I'm overwhelmed just reading that! I can't imagine what you all went through! I cried for 4 days after my son was diagnosed at 6 months old. Now my son is 11 - is really pretty healthy (hasn't missed a day of school for sickness in years) and is very active. So it does make it easier for now. The wondering what is going to happen and when is probably the hardest part. There isn't a day that goes by that you don't think about CF and why it had to be your kid!! And when they ask you "why do I have to have CF, take all these pills and do treatments" it can tear you apart inside. But my son also has a kid in his class with MD - in a wheelchair - so it does help him see the bright side of things. If he couldn't play baseball, basketball and football it would devastate him and us. Right now he can play a whole game of basketball and hardly be winded at the end. I just know when your kids are so young it's hard to imagine what's to come - but keep them as active as they can - and keep praying for the best as they get older. It scares me to keep reading about all the people that started having more problems as they hit teens and twenties - so I'm just counting our blessings everyday. I wish you all luck and hope you can find a way to deal with this - we just love our kids soooo much

BabyBeauty · Jan 20, 2009

Welcome to the site. You will find so much helpful information and support here. It has been my lifesaver many a night! I remember my first post here. I think I actually felt my heart breaking as I wrote it. Many people posted that I would feel better over time. It is so true. My daughter was diagnosed through newborn screening at one month. She has her first birthday at the end of this month! The bad days will get less and less as you learn and cope. By one year I have many more happy days than bad.

BabyBeauty · Jan 20, 2009

Welcome to the site. You will find so much helpful information and support here. It has been my lifesaver many a night! I remember my first post here. I think I actually felt my heart breaking as I wrote it. Many people posted that I would feel better over time. It is so true. My daughter was diagnosed through newborn screening at one month. She has her first birthday at the end of this month! The bad days will get less and less as you learn and cope. By one year I have many more happy days than bad.

BabyBeauty · Jan 20, 2009

Welcome to the site. You will find so much helpful information and support here. It has been my lifesaver many a night! I remember my first post here. I think I actually felt my heart breaking as I wrote it. Many people posted that I would feel better over time. It is so true. My daughter was diagnosed through newborn screening at one month. She has her first birthday at the end of this month! The bad days will get less and less as you learn and cope. By one year I have many more happy days than bad.

BabyBeauty · Jan 20, 2009

Welcome to the site. You will find so much helpful information and support here. It has been my lifesaver many a night! I remember my first post here. I think I actually felt my heart breaking as I wrote it. Many people posted that I would feel better over time. It is so true. My daughter was diagnosed through newborn screening at one month. She has her first birthday at the end of this month! The bad days will get less and less as you learn and cope. By one year I have many more happy days than bad.

BabyBeauty · Jan 20, 2009

Welcome to the site. You will find so much helpful information and support here. It has been my lifesaver many a night! I remember my first post here. I think I actually felt my heart breaking as I wrote it. Many people posted that I would feel better over time. It is so true. My daughter was diagnosed through newborn screening at one month. She has her first birthday at the end of this month! The bad days will get less and less as you learn and cope. By one year I have many more happy days than bad.

SarahJean1976 · Jan 20, 2009

I absolutely LOVE you all... and as I read what you are writing it breaks my heart to know what my mom went through as I was diagnosed at 3 months... though back then the prognosiss (LOL at my spelling) was definately not as good as it is now... That is a big part of why we founded Breathe 4 Tomorrow Foundation, so new mommas like you all know "LOOK AT ME!!! I am 32 years old and I have Cystic Fibrosis"... I want all the CFers to know that they need to plan on going to college... they are going to be mommies and daddies... they are going to live!!! You need to turn it over and know that God is walking with you and that it is out of your control and you have to do your best to raise them as though they are not sick... I have a great blog called "raising/ parenting the CF warrior" so check it out... I get so many emails about it, so I want to make sure to share it with you... www.breathe4tomorrow.org
xoxo
Sarah Jean

SarahJean1976 · Jan 20, 2009

I absolutely LOVE you all... and as I read what you are writing it breaks my heart to know what my mom went through as I was diagnosed at 3 months... though back then the prognosiss (LOL at my spelling) was definately not as good as it is now... That is a big part of why we founded Breathe 4 Tomorrow Foundation, so new mommas like you all know "LOOK AT ME!!! I am 32 years old and I have Cystic Fibrosis"... I want all the CFers to know that they need to plan on going to college... they are going to be mommies and daddies... they are going to live!!! You need to turn it over and know that God is walking with you and that it is out of your control and you have to do your best to raise them as though they are not sick... I have a great blog called "raising/ parenting the CF warrior" so check it out... I get so many emails about it, so I want to make sure to share it with you... www.breathe4tomorrow.org
xoxo
Sarah Jean

SarahJean1976 · Jan 20, 2009

I absolutely LOVE you all... and as I read what you are writing it breaks my heart to know what my mom went through as I was diagnosed at 3 months... though back then the prognosiss (LOL at my spelling) was definately not as good as it is now... That is a big part of why we founded Breathe 4 Tomorrow Foundation, so new mommas like you all know "LOOK AT ME!!! I am 32 years old and I have Cystic Fibrosis"... I want all the CFers to know that they need to plan on going to college... they are going to be mommies and daddies... they are going to live!!! You need to turn it over and know that God is walking with you and that it is out of your control and you have to do your best to raise them as though they are not sick... I have a great blog called "raising/ parenting the CF warrior" so check it out... I get so many emails about it, so I want to make sure to share it with you... www.breathe4tomorrow.org
xoxo
Sarah Jean

SarahJean1976 · Jan 20, 2009

I absolutely LOVE you all... and as I read what you are writing it breaks my heart to know what my mom went through as I was diagnosed at 3 months... though back then the prognosiss (LOL at my spelling) was definately not as good as it is now... That is a big part of why we founded Breathe 4 Tomorrow Foundation, so new mommas like you all know "LOOK AT ME!!! I am 32 years old and I have Cystic Fibrosis"... I want all the CFers to know that they need to plan on going to college... they are going to be mommies and daddies... they are going to live!!! You need to turn it over and know that God is walking with you and that it is out of your control and you have to do your best to raise them as though they are not sick... I have a great blog called "raising/ parenting the CF warrior" so check it out... I get so many emails about it, so I want to make sure to share it with you... www.breathe4tomorrow.org
xoxo
Sarah Jean

SarahJean1976 · Jan 20, 2009

I absolutely LOVE you all... and as I read what you are writing it breaks my heart to know what my mom went through as I was diagnosed at 3 months... though back then the prognosiss (LOL at my spelling) was definately not as good as it is now... That is a big part of why we founded Breathe 4 Tomorrow Foundation, so new mommas like you all know "LOOK AT ME!!! I am 32 years old and I have Cystic Fibrosis"... I want all the CFers to know that they need to plan on going to college... they are going to be mommies and daddies... they are going to live!!! You need to turn it over and know that God is walking with you and that it is out of your control and you have to do your best to raise them as though they are not sick... I have a great blog called "raising/ parenting the CF warrior" so check it out... I get so many emails about it, so I want to make sure to share it with you... www.breathe4tomorrow.org
<br />xoxo
<br />Sarah Jean

STILL COPING

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