Why my kid.....

6

65roses4Daegan

New member
<img src="i/expressions/brokenheart.gif" border="0">
I am an 18 year old CF patient... I have lived my whole life knowing I had CF, I didn't get to do the things the other kids did, and spent a lot of time in the hospital. As I got older my condition seemed as if it wasn't as extreme. I took myself off of my meds, and hadn't been hospitalized for a year! I was 15 and got Kidney stones severly and was in a lot of pain, but that was all I had go wrong.

I got pregnant and decided not to test my baby. I didn't want the thought of having a baby with CF and go through life like I did. My baby ended up coming a little early and was very sick... I thought it was because he was a preemie, so once again I decided not to test him. He was 14 monthes old and had a 105.2 temp. and wouldn't talk, play, eat, drink, go to the restroom, anything! I rushed him to the hospital, 3 weeks in a row, they said he had a cold, finally on Dec. 19th, I decided I wasn't leaving the hospital until I had some answers... my baby boy wouldn't move! I wanted to know why! for 3 days we sat in that hospital with his temp not going anywhere and still....no answers. The doctor finally came to me with a question, (not an answer like I wanted) She wanted me to let her do a sweat chloride test on Daegan. It took me sometime to discuss it with my family, but I decided to go ahead and let her. On Christmas morning a nurse walked into my room and told me the doctor was on the phone, so as I go to pick the phone up, all the nurses on the peds floor walked into my room, at that point I knew what was coming next.... the news, Daegan had Cystic Fibrosis.... i lost it! I fell to the floor crying! My worst nightmare... came true! Why my baby? WHY? I was so angry~ I didn't even know what to do! How could it happen to my baby, my only child, my miracle baby! HOW? WHY? I was puzzeled! My parent's convinced me it was meant to be! That I had it my life and now I can help my child with CF and I will know how he feels when he can't do the things the other kids are doing!

I found out a few weeks ago my son also had another problem. He had a whole in his heart and his blood was flowing in the opposite direction that it should have been. What else could go wrong with my poor baby?

I am now going through a custody battle... it just gets worse and worse.... His father has NO idea what CF is, and it scares me! If you don't even know what CF is, then how are you going to take care of my kid? He requires a lot of help! He is fragile he is tiny! He is a 2 year old who has only had 2 cuts in his whole life! How do you keep a toddler from getting cuts, scrapes, and bruises? All mommy's attention! All Mommy's love and help, and willingness to be there and work with my CF child!

My question is directly towards this..... do you think in my situation that my child is probably healthier living with a non-smoker and non-drinker or with a family of heavy drinkers and smokers? My child has CF he needs the attention and support with a healthy living enviroment! My mother smoked around me and I always had a hard time breathing, I too also became a smoker, but quit when I found out I was pregnant... Somebody help me! Do you think I am wrong for wanting my kid to live with me because I have CF also and am doing what I think is best for his heart, body, soul and mind? Please tell me what you think!!!

Love always~
Aubre' Miller

Diagnosed with CF at 23months
Daegan my son, Diagnosed with CF at 14months
 
6

65roses4Daegan

New member
<img src="i/expressions/brokenheart.gif" border="0">
I am an 18 year old CF patient... I have lived my whole life knowing I had CF, I didn't get to do the things the other kids did, and spent a lot of time in the hospital. As I got older my condition seemed as if it wasn't as extreme. I took myself off of my meds, and hadn't been hospitalized for a year! I was 15 and got Kidney stones severly and was in a lot of pain, but that was all I had go wrong.

I got pregnant and decided not to test my baby. I didn't want the thought of having a baby with CF and go through life like I did. My baby ended up coming a little early and was very sick... I thought it was because he was a preemie, so once again I decided not to test him. He was 14 monthes old and had a 105.2 temp. and wouldn't talk, play, eat, drink, go to the restroom, anything! I rushed him to the hospital, 3 weeks in a row, they said he had a cold, finally on Dec. 19th, I decided I wasn't leaving the hospital until I had some answers... my baby boy wouldn't move! I wanted to know why! for 3 days we sat in that hospital with his temp not going anywhere and still....no answers. The doctor finally came to me with a question, (not an answer like I wanted) She wanted me to let her do a sweat chloride test on Daegan. It took me sometime to discuss it with my family, but I decided to go ahead and let her. On Christmas morning a nurse walked into my room and told me the doctor was on the phone, so as I go to pick the phone up, all the nurses on the peds floor walked into my room, at that point I knew what was coming next.... the news, Daegan had Cystic Fibrosis.... i lost it! I fell to the floor crying! My worst nightmare... came true! Why my baby? WHY? I was so angry~ I didn't even know what to do! How could it happen to my baby, my only child, my miracle baby! HOW? WHY? I was puzzeled! My parent's convinced me it was meant to be! That I had it my life and now I can help my child with CF and I will know how he feels when he can't do the things the other kids are doing!

I found out a few weeks ago my son also had another problem. He had a whole in his heart and his blood was flowing in the opposite direction that it should have been. What else could go wrong with my poor baby?

I am now going through a custody battle... it just gets worse and worse.... His father has NO idea what CF is, and it scares me! If you don't even know what CF is, then how are you going to take care of my kid? He requires a lot of help! He is fragile he is tiny! He is a 2 year old who has only had 2 cuts in his whole life! How do you keep a toddler from getting cuts, scrapes, and bruises? All mommy's attention! All Mommy's love and help, and willingness to be there and work with my CF child!

My question is directly towards this..... do you think in my situation that my child is probably healthier living with a non-smoker and non-drinker or with a family of heavy drinkers and smokers? My child has CF he needs the attention and support with a healthy living enviroment! My mother smoked around me and I always had a hard time breathing, I too also became a smoker, but quit when I found out I was pregnant... Somebody help me! Do you think I am wrong for wanting my kid to live with me because I have CF also and am doing what I think is best for his heart, body, soul and mind? Please tell me what you think!!!

Love always~
Aubre' Miller

Diagnosed with CF at 23months
Daegan my son, Diagnosed with CF at 14months
 
6

65roses4Daegan

New member
<img src="i/expressions/brokenheart.gif" border="0">
I am an 18 year old CF patient... I have lived my whole life knowing I had CF, I didn't get to do the things the other kids did, and spent a lot of time in the hospital. As I got older my condition seemed as if it wasn't as extreme. I took myself off of my meds, and hadn't been hospitalized for a year! I was 15 and got Kidney stones severly and was in a lot of pain, but that was all I had go wrong.

I got pregnant and decided not to test my baby. I didn't want the thought of having a baby with CF and go through life like I did. My baby ended up coming a little early and was very sick... I thought it was because he was a preemie, so once again I decided not to test him. He was 14 monthes old and had a 105.2 temp. and wouldn't talk, play, eat, drink, go to the restroom, anything! I rushed him to the hospital, 3 weeks in a row, they said he had a cold, finally on Dec. 19th, I decided I wasn't leaving the hospital until I had some answers... my baby boy wouldn't move! I wanted to know why! for 3 days we sat in that hospital with his temp not going anywhere and still....no answers. The doctor finally came to me with a question, (not an answer like I wanted) She wanted me to let her do a sweat chloride test on Daegan. It took me sometime to discuss it with my family, but I decided to go ahead and let her. On Christmas morning a nurse walked into my room and told me the doctor was on the phone, so as I go to pick the phone up, all the nurses on the peds floor walked into my room, at that point I knew what was coming next.... the news, Daegan had Cystic Fibrosis.... i lost it! I fell to the floor crying! My worst nightmare... came true! Why my baby? WHY? I was so angry~ I didn't even know what to do! How could it happen to my baby, my only child, my miracle baby! HOW? WHY? I was puzzeled! My parent's convinced me it was meant to be! That I had it my life and now I can help my child with CF and I will know how he feels when he can't do the things the other kids are doing!

I found out a few weeks ago my son also had another problem. He had a whole in his heart and his blood was flowing in the opposite direction that it should have been. What else could go wrong with my poor baby?

I am now going through a custody battle... it just gets worse and worse.... His father has NO idea what CF is, and it scares me! If you don't even know what CF is, then how are you going to take care of my kid? He requires a lot of help! He is fragile he is tiny! He is a 2 year old who has only had 2 cuts in his whole life! How do you keep a toddler from getting cuts, scrapes, and bruises? All mommy's attention! All Mommy's love and help, and willingness to be there and work with my CF child!

My question is directly towards this..... do you think in my situation that my child is probably healthier living with a non-smoker and non-drinker or with a family of heavy drinkers and smokers? My child has CF he needs the attention and support with a healthy living enviroment! My mother smoked around me and I always had a hard time breathing, I too also became a smoker, but quit when I found out I was pregnant... Somebody help me! Do you think I am wrong for wanting my kid to live with me because I have CF also and am doing what I think is best for his heart, body, soul and mind? Please tell me what you think!!!

Love always~
Aubre' Miller

Diagnosed with CF at 23months
Daegan my son, Diagnosed with CF at 14months
 
6

65roses4Daegan

New member
<img src="i/expressions/brokenheart.gif" border="0">
I am an 18 year old CF patient... I have lived my whole life knowing I had CF, I didn't get to do the things the other kids did, and spent a lot of time in the hospital. As I got older my condition seemed as if it wasn't as extreme. I took myself off of my meds, and hadn't been hospitalized for a year! I was 15 and got Kidney stones severly and was in a lot of pain, but that was all I had go wrong.

I got pregnant and decided not to test my baby. I didn't want the thought of having a baby with CF and go through life like I did. My baby ended up coming a little early and was very sick... I thought it was because he was a preemie, so once again I decided not to test him. He was 14 monthes old and had a 105.2 temp. and wouldn't talk, play, eat, drink, go to the restroom, anything! I rushed him to the hospital, 3 weeks in a row, they said he had a cold, finally on Dec. 19th, I decided I wasn't leaving the hospital until I had some answers... my baby boy wouldn't move! I wanted to know why! for 3 days we sat in that hospital with his temp not going anywhere and still....no answers. The doctor finally came to me with a question, (not an answer like I wanted) She wanted me to let her do a sweat chloride test on Daegan. It took me sometime to discuss it with my family, but I decided to go ahead and let her. On Christmas morning a nurse walked into my room and told me the doctor was on the phone, so as I go to pick the phone up, all the nurses on the peds floor walked into my room, at that point I knew what was coming next.... the news, Daegan had Cystic Fibrosis.... i lost it! I fell to the floor crying! My worst nightmare... came true! Why my baby? WHY? I was so angry~ I didn't even know what to do! How could it happen to my baby, my only child, my miracle baby! HOW? WHY? I was puzzeled! My parent's convinced me it was meant to be! That I had it my life and now I can help my child with CF and I will know how he feels when he can't do the things the other kids are doing!

I found out a few weeks ago my son also had another problem. He had a whole in his heart and his blood was flowing in the opposite direction that it should have been. What else could go wrong with my poor baby?

I am now going through a custody battle... it just gets worse and worse.... His father has NO idea what CF is, and it scares me! If you don't even know what CF is, then how are you going to take care of my kid? He requires a lot of help! He is fragile he is tiny! He is a 2 year old who has only had 2 cuts in his whole life! How do you keep a toddler from getting cuts, scrapes, and bruises? All mommy's attention! All Mommy's love and help, and willingness to be there and work with my CF child!

My question is directly towards this..... do you think in my situation that my child is probably healthier living with a non-smoker and non-drinker or with a family of heavy drinkers and smokers? My child has CF he needs the attention and support with a healthy living enviroment! My mother smoked around me and I always had a hard time breathing, I too also became a smoker, but quit when I found out I was pregnant... Somebody help me! Do you think I am wrong for wanting my kid to live with me because I have CF also and am doing what I think is best for his heart, body, soul and mind? Please tell me what you think!!!

Love always~
Aubre' Miller

Diagnosed with CF at 23months
Daegan my son, Diagnosed with CF at 14months
 
6

65roses4Daegan

New member
<img src="i/expressions/brokenheart.gif" border="0">
I am an 18 year old CF patient... I have lived my whole life knowing I had CF, I didn't get to do the things the other kids did, and spent a lot of time in the hospital. As I got older my condition seemed as if it wasn't as extreme. I took myself off of my meds, and hadn't been hospitalized for a year! I was 15 and got Kidney stones severly and was in a lot of pain, but that was all I had go wrong.

I got pregnant and decided not to test my baby. I didn't want the thought of having a baby with CF and go through life like I did. My baby ended up coming a little early and was very sick... I thought it was because he was a preemie, so once again I decided not to test him. He was 14 monthes old and had a 105.2 temp. and wouldn't talk, play, eat, drink, go to the restroom, anything! I rushed him to the hospital, 3 weeks in a row, they said he had a cold, finally on Dec. 19th, I decided I wasn't leaving the hospital until I had some answers... my baby boy wouldn't move! I wanted to know why! for 3 days we sat in that hospital with his temp not going anywhere and still....no answers. The doctor finally came to me with a question, (not an answer like I wanted) She wanted me to let her do a sweat chloride test on Daegan. It took me sometime to discuss it with my family, but I decided to go ahead and let her. On Christmas morning a nurse walked into my room and told me the doctor was on the phone, so as I go to pick the phone up, all the nurses on the peds floor walked into my room, at that point I knew what was coming next.... the news, Daegan had Cystic Fibrosis.... i lost it! I fell to the floor crying! My worst nightmare... came true! Why my baby? WHY? I was so angry~ I didn't even know what to do! How could it happen to my baby, my only child, my miracle baby! HOW? WHY? I was puzzeled! My parent's convinced me it was meant to be! That I had it my life and now I can help my child with CF and I will know how he feels when he can't do the things the other kids are doing!

I found out a few weeks ago my son also had another problem. He had a whole in his heart and his blood was flowing in the opposite direction that it should have been. What else could go wrong with my poor baby?

I am now going through a custody battle... it just gets worse and worse.... His father has NO idea what CF is, and it scares me! If you don't even know what CF is, then how are you going to take care of my kid? He requires a lot of help! He is fragile he is tiny! He is a 2 year old who has only had 2 cuts in his whole life! How do you keep a toddler from getting cuts, scrapes, and bruises? All mommy's attention! All Mommy's love and help, and willingness to be there and work with my CF child!

My question is directly towards this..... do you think in my situation that my child is probably healthier living with a non-smoker and non-drinker or with a family of heavy drinkers and smokers? My child has CF he needs the attention and support with a healthy living enviroment! My mother smoked around me and I always had a hard time breathing, I too also became a smoker, but quit when I found out I was pregnant... Somebody help me! Do you think I am wrong for wanting my kid to live with me because I have CF also and am doing what I think is best for his heart, body, soul and mind? Please tell me what you think!!!

Love always~
Aubre' Miller

Diagnosed with CF at 23months
Daegan my son, Diagnosed with CF at 14months
 
T

tammykrumrey

Guest
Aubre',

Wow. This is a lot for an 18 year old to deal with.

First and foremost...you have to keep yourself healthy and take care of your CF so that you can in turn take good care of your son and his CF.

Second, personally I feel that all children, not just a child with CF, deserves a smoke free environment to live in. That is my personal feeling. My parents smoked when I was little (I do not have CF, both my daughters do) and I hated the smell of the smoke in my clothes, on my hair, etc. My extended family all smoked as well, and I still remember holidays with smoky filled rooms that would burn my eyes. I just think that if a parent smokes that they should do so outside the home. It's not fair to put a helpless child, with CF or not, in an unhealthy situation. Just my opinion.

As for the drinking. I do not know enough about your and your child's father to give an opinion of your specific situation. I do not drink, but maybe one or two a month...but my husband does drink on an almost daily basis. But that is not saying that he gets drunk on a daily basis, he just has a few drinks when he gets home at night from work. When he does drink too much, my nine year old gets very angry with him and does react to him with much anger. She does not like it at all.

I don't think you are wrong for loving your son and wanting him to stay with you. But I do think that a non-CF parent can also take care of a child with CF just as well as a parent who doesn't have CF. I am sure that your parents did a good job taking care of you even though they, themselves, don't have CF. I think it's important for both parents to be involved in a childs life, unless a parent is neglectful. I think it would be in the best interest in your son to have both of his parents in his life as much as possible. His father can learn how to care for someone with CF, just like all of us other parents had to do.

I wish you the best of everything and hope it works out so that you and your son can be together as much as possible<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Aubre',

Wow. This is a lot for an 18 year old to deal with.

First and foremost...you have to keep yourself healthy and take care of your CF so that you can in turn take good care of your son and his CF.

Second, personally I feel that all children, not just a child with CF, deserves a smoke free environment to live in. That is my personal feeling. My parents smoked when I was little (I do not have CF, both my daughters do) and I hated the smell of the smoke in my clothes, on my hair, etc. My extended family all smoked as well, and I still remember holidays with smoky filled rooms that would burn my eyes. I just think that if a parent smokes that they should do so outside the home. It's not fair to put a helpless child, with CF or not, in an unhealthy situation. Just my opinion.

As for the drinking. I do not know enough about your and your child's father to give an opinion of your specific situation. I do not drink, but maybe one or two a month...but my husband does drink on an almost daily basis. But that is not saying that he gets drunk on a daily basis, he just has a few drinks when he gets home at night from work. When he does drink too much, my nine year old gets very angry with him and does react to him with much anger. She does not like it at all.

I don't think you are wrong for loving your son and wanting him to stay with you. But I do think that a non-CF parent can also take care of a child with CF just as well as a parent who doesn't have CF. I am sure that your parents did a good job taking care of you even though they, themselves, don't have CF. I think it's important for both parents to be involved in a childs life, unless a parent is neglectful. I think it would be in the best interest in your son to have both of his parents in his life as much as possible. His father can learn how to care for someone with CF, just like all of us other parents had to do.

I wish you the best of everything and hope it works out so that you and your son can be together as much as possible<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Aubre',

Wow. This is a lot for an 18 year old to deal with.

First and foremost...you have to keep yourself healthy and take care of your CF so that you can in turn take good care of your son and his CF.

Second, personally I feel that all children, not just a child with CF, deserves a smoke free environment to live in. That is my personal feeling. My parents smoked when I was little (I do not have CF, both my daughters do) and I hated the smell of the smoke in my clothes, on my hair, etc. My extended family all smoked as well, and I still remember holidays with smoky filled rooms that would burn my eyes. I just think that if a parent smokes that they should do so outside the home. It's not fair to put a helpless child, with CF or not, in an unhealthy situation. Just my opinion.

As for the drinking. I do not know enough about your and your child's father to give an opinion of your specific situation. I do not drink, but maybe one or two a month...but my husband does drink on an almost daily basis. But that is not saying that he gets drunk on a daily basis, he just has a few drinks when he gets home at night from work. When he does drink too much, my nine year old gets very angry with him and does react to him with much anger. She does not like it at all.

I don't think you are wrong for loving your son and wanting him to stay with you. But I do think that a non-CF parent can also take care of a child with CF just as well as a parent who doesn't have CF. I am sure that your parents did a good job taking care of you even though they, themselves, don't have CF. I think it's important for both parents to be involved in a childs life, unless a parent is neglectful. I think it would be in the best interest in your son to have both of his parents in his life as much as possible. His father can learn how to care for someone with CF, just like all of us other parents had to do.

I wish you the best of everything and hope it works out so that you and your son can be together as much as possible<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Aubre',

Wow. This is a lot for an 18 year old to deal with.

First and foremost...you have to keep yourself healthy and take care of your CF so that you can in turn take good care of your son and his CF.

Second, personally I feel that all children, not just a child with CF, deserves a smoke free environment to live in. That is my personal feeling. My parents smoked when I was little (I do not have CF, both my daughters do) and I hated the smell of the smoke in my clothes, on my hair, etc. My extended family all smoked as well, and I still remember holidays with smoky filled rooms that would burn my eyes. I just think that if a parent smokes that they should do so outside the home. It's not fair to put a helpless child, with CF or not, in an unhealthy situation. Just my opinion.

As for the drinking. I do not know enough about your and your child's father to give an opinion of your specific situation. I do not drink, but maybe one or two a month...but my husband does drink on an almost daily basis. But that is not saying that he gets drunk on a daily basis, he just has a few drinks when he gets home at night from work. When he does drink too much, my nine year old gets very angry with him and does react to him with much anger. She does not like it at all.

I don't think you are wrong for loving your son and wanting him to stay with you. But I do think that a non-CF parent can also take care of a child with CF just as well as a parent who doesn't have CF. I am sure that your parents did a good job taking care of you even though they, themselves, don't have CF. I think it's important for both parents to be involved in a childs life, unless a parent is neglectful. I think it would be in the best interest in your son to have both of his parents in his life as much as possible. His father can learn how to care for someone with CF, just like all of us other parents had to do.

I wish you the best of everything and hope it works out so that you and your son can be together as much as possible<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Aubre',

Wow. This is a lot for an 18 year old to deal with.

First and foremost...you have to keep yourself healthy and take care of your CF so that you can in turn take good care of your son and his CF.

Second, personally I feel that all children, not just a child with CF, deserves a smoke free environment to live in. That is my personal feeling. My parents smoked when I was little (I do not have CF, both my daughters do) and I hated the smell of the smoke in my clothes, on my hair, etc. My extended family all smoked as well, and I still remember holidays with smoky filled rooms that would burn my eyes. I just think that if a parent smokes that they should do so outside the home. It's not fair to put a helpless child, with CF or not, in an unhealthy situation. Just my opinion.

As for the drinking. I do not know enough about your and your child's father to give an opinion of your specific situation. I do not drink, but maybe one or two a month...but my husband does drink on an almost daily basis. But that is not saying that he gets drunk on a daily basis, he just has a few drinks when he gets home at night from work. When he does drink too much, my nine year old gets very angry with him and does react to him with much anger. She does not like it at all.

I don't think you are wrong for loving your son and wanting him to stay with you. But I do think that a non-CF parent can also take care of a child with CF just as well as a parent who doesn't have CF. I am sure that your parents did a good job taking care of you even though they, themselves, don't have CF. I think it's important for both parents to be involved in a childs life, unless a parent is neglectful. I think it would be in the best interest in your son to have both of his parents in his life as much as possible. His father can learn how to care for someone with CF, just like all of us other parents had to do.

I wish you the best of everything and hope it works out so that you and your son can be together as much as possible<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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