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LouLou

New member
Looks like I'm part of the "Families

The nurses comment made total sense. Many cfers don't take care of themselves the way their own mother would see fit. I am an exception in that I am 100% compliant. It didn't strike a nerve because of a feeling of "how dare she" as I think some of you might have thought that I meant but rather a "shIIt this is going to be different." It's hard to explain but I think it stems from me feeling "in control" of my cf and that comment was a wake up call that it could be a total different ballgame with him. And I hope it is :) He has a wonderful life to lead free of cf symptoms (fingers crossed) unlike his mommy.
 
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LouLou

New member
Looks like I'm part of the "Families

The nurses comment made total sense. Many cfers don't take care of themselves the way their own mother would see fit. I am an exception in that I am 100% compliant. It didn't strike a nerve because of a feeling of "how dare she" as I think some of you might have thought that I meant but rather a "shIIt this is going to be different." It's hard to explain but I think it stems from me feeling "in control" of my cf and that comment was a wake up call that it could be a total different ballgame with him. And I hope it is :) He has a wonderful life to lead free of cf symptoms (fingers crossed) unlike his mommy.
 
L

LouLou

New member
Looks like I'm part of the "Families

The nurses comment made total sense. Many cfers don't take care of themselves the way their own mother would see fit. I am an exception in that I am 100% compliant. It didn't strike a nerve because of a feeling of "how dare she" as I think some of you might have thought that I meant but rather a "shIIt this is going to be different." It's hard to explain but I think it stems from me feeling "in control" of my cf and that comment was a wake up call that it could be a total different ballgame with him. And I hope it is :) He has a wonderful life to lead free of cf symptoms (fingers crossed) unlike his mommy.
 
L

LouLou

New member
Looks like I'm part of the "Families

The nurses comment made total sense. Many cfers don't take care of themselves the way their own mother would see fit. I am an exception in that I am 100% compliant. It didn't strike a nerve because of a feeling of "how dare she" as I think some of you might have thought that I meant but rather a "shIIt this is going to be different." It's hard to explain but I think it stems from me feeling "in control" of my cf and that comment was a wake up call that it could be a total different ballgame with him. And I hope it is :) He has a wonderful life to lead free of cf symptoms (fingers crossed) unlike his mommy.
 
L

LouLou

New member
Looks like I'm part of the "Families

The nurses comment made total sense. Many cfers don't take care of themselves the way their own mother would see fit. I am an exception in that I am 100% compliant. It didn't strike a nerve because of a feeling of "how dare she" as I think some of you might have thought that I meant but rather a "shIIt this is going to be different." It's hard to explain but I think it stems from me feeling "in control" of my cf and that comment was a wake up call that it could be a total different ballgame with him. And I hope it is :) He has a wonderful life to lead free of cf symptoms (fingers crossed) unlike his mommy.
 
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Ratatosk

Administrator
Staff member
Looks like I'm part of the "Families

Sorry we have to welcome you to group. Know it's easier said than done, but just try to ENJOY Isaac. Enjoy all his milestones. DS' CF doctor told us from day one to just allow ourselves 10-15 minutes a day to dwell on his cf, otherwise, just focus on him. Sometimes I'd have a good cry or I'd just rock him...

Sometimes I feel I missed out on so much because when we first brought him home, I was terrified -- worried he'd get another blockage, worried he wasn't eating enough. I wish I'd discovered this place a lot sooner, so I wouldn't have felt so alone in all of this.
 
R

Ratatosk

Administrator
Staff member
Looks like I'm part of the "Families

Sorry we have to welcome you to group. Know it's easier said than done, but just try to ENJOY Isaac. Enjoy all his milestones. DS' CF doctor told us from day one to just allow ourselves 10-15 minutes a day to dwell on his cf, otherwise, just focus on him. Sometimes I'd have a good cry or I'd just rock him...

Sometimes I feel I missed out on so much because when we first brought him home, I was terrified -- worried he'd get another blockage, worried he wasn't eating enough. I wish I'd discovered this place a lot sooner, so I wouldn't have felt so alone in all of this.
 
R

Ratatosk

Administrator
Staff member
Looks like I'm part of the "Families

Sorry we have to welcome you to group. Know it's easier said than done, but just try to ENJOY Isaac. Enjoy all his milestones. DS' CF doctor told us from day one to just allow ourselves 10-15 minutes a day to dwell on his cf, otherwise, just focus on him. Sometimes I'd have a good cry or I'd just rock him...

Sometimes I feel I missed out on so much because when we first brought him home, I was terrified -- worried he'd get another blockage, worried he wasn't eating enough. I wish I'd discovered this place a lot sooner, so I wouldn't have felt so alone in all of this.
 
R

Ratatosk

Administrator
Staff member
Looks like I'm part of the "Families

Sorry we have to welcome you to group. Know it's easier said than done, but just try to ENJOY Isaac. Enjoy all his milestones. DS' CF doctor told us from day one to just allow ourselves 10-15 minutes a day to dwell on his cf, otherwise, just focus on him. Sometimes I'd have a good cry or I'd just rock him...

Sometimes I feel I missed out on so much because when we first brought him home, I was terrified -- worried he'd get another blockage, worried he wasn't eating enough. I wish I'd discovered this place a lot sooner, so I wouldn't have felt so alone in all of this.
 
R

Ratatosk

Administrator
Staff member
Looks like I'm part of the "Families

Sorry we have to welcome you to group. Know it's easier said than done, but just try to ENJOY Isaac. Enjoy all his milestones. DS' CF doctor told us from day one to just allow ourselves 10-15 minutes a day to dwell on his cf, otherwise, just focus on him. Sometimes I'd have a good cry or I'd just rock him...

Sometimes I feel I missed out on so much because when we first brought him home, I was terrified -- worried he'd get another blockage, worried he wasn't eating enough. I wish I'd discovered this place a lot sooner, so I wouldn't have felt so alone in all of this.
 
A

age

Guest
Looks like I'm part of the "Families

Im sorry you have gotten the worst news ive been there and understand. you know your baby is a fighter and you will be strong if you ever want to ramble you just contact me anytime. 26 yr old mom of 1 year old girl w/cf
 
A

age

Guest
Looks like I'm part of the "Families

Im sorry you have gotten the worst news ive been there and understand. you know your baby is a fighter and you will be strong if you ever want to ramble you just contact me anytime. 26 yr old mom of 1 year old girl w/cf
 
A

age

Guest
Looks like I'm part of the "Families

Im sorry you have gotten the worst news ive been there and understand. you know your baby is a fighter and you will be strong if you ever want to ramble you just contact me anytime. 26 yr old mom of 1 year old girl w/cf
 
A

age

Guest
Looks like I'm part of the "Families

Im sorry you have gotten the worst news ive been there and understand. you know your baby is a fighter and you will be strong if you ever want to ramble you just contact me anytime. 26 yr old mom of 1 year old girl w/cf
 
A

age

Guest
Looks like I'm part of the "Families

Im sorry you have gotten the worst news ive been there and understand. you know your baby is a fighter and you will be strong if you ever want to ramble you just contact me anytime. 26 yr old mom of 1 year old girl w/cf
 
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EmilysMomma

New member
Looks like I'm part of the "Families

Hi there I am so sorry , I know exactly how you feel. I have cf and cfrd and my daughter just turned 2 and we had sweat testing and then the genetic testing done on her starting at 6 months only because I have it and we had not gotten the chance to have my husband tested before I got pregnant.

It turned out she does have 2 copies of cf genes from me df508 and the one from my husband I cannot remember right now but combined it equals a mild case of cf as they put it, so far she is pancreatic sufficient but will continue to have stool test done about 2 times a year because the dr said it could change.

Sometimes it's really hard taking care of 2 people with cf and she is so active and sometimes it is hard to keep up with her especially when I feel sick, it's definitely not always easy. I also got really sick when I was pregnant and spent the last month in the hospital and then was induced at 36 weeks. The pregnancy also brought out the diabetes as well, so because of how my body handled the pregnancy I made the decision to have my tubes tied a few months ago (which was SOO hard to have to do at age 23) but I felt it would be best for me to not worry about getting pregnant again because I don't want to risk another pregnancy as I just want to be here as long as possible for my daughter.. and honestly I think about how hard it would be having 2 of her , and lol i seriously dont think I could handle it just because just she wears me out...although I would love to if I didnt have cf and ALSo the fact that it would be 50/50 possibility of another baby having cf...

by the way i am a stay at home mother now , when I went back to work 3 months after having her I kept getting sick and then finally decided I couldnt work anymore it was too much and also was advised by my dr to stay at home... I was awarded ssdi a year ago and only waited 2 months for my response which was SOOOO unexpected. So I encourage you to at least apply for it and for anyone else to as well who is considering it as it really was a quick and easy process, not much at all like I had imagined and that's what had made me wait so long to finally apply...

anyhow please feel free to message me, it's really hard to find other mothers that have a child with cf that have it themselves.
 
E

EmilysMomma

New member
Looks like I'm part of the "Families

Hi there I am so sorry , I know exactly how you feel. I have cf and cfrd and my daughter just turned 2 and we had sweat testing and then the genetic testing done on her starting at 6 months only because I have it and we had not gotten the chance to have my husband tested before I got pregnant.

It turned out she does have 2 copies of cf genes from me df508 and the one from my husband I cannot remember right now but combined it equals a mild case of cf as they put it, so far she is pancreatic sufficient but will continue to have stool test done about 2 times a year because the dr said it could change.

Sometimes it's really hard taking care of 2 people with cf and she is so active and sometimes it is hard to keep up with her especially when I feel sick, it's definitely not always easy. I also got really sick when I was pregnant and spent the last month in the hospital and then was induced at 36 weeks. The pregnancy also brought out the diabetes as well, so because of how my body handled the pregnancy I made the decision to have my tubes tied a few months ago (which was SOO hard to have to do at age 23) but I felt it would be best for me to not worry about getting pregnant again because I don't want to risk another pregnancy as I just want to be here as long as possible for my daughter.. and honestly I think about how hard it would be having 2 of her , and lol i seriously dont think I could handle it just because just she wears me out...although I would love to if I didnt have cf and ALSo the fact that it would be 50/50 possibility of another baby having cf...

by the way i am a stay at home mother now , when I went back to work 3 months after having her I kept getting sick and then finally decided I couldnt work anymore it was too much and also was advised by my dr to stay at home... I was awarded ssdi a year ago and only waited 2 months for my response which was SOOOO unexpected. So I encourage you to at least apply for it and for anyone else to as well who is considering it as it really was a quick and easy process, not much at all like I had imagined and that's what had made me wait so long to finally apply...

anyhow please feel free to message me, it's really hard to find other mothers that have a child with cf that have it themselves.
 
E

EmilysMomma

New member
Looks like I'm part of the "Families

Hi there I am so sorry , I know exactly how you feel. I have cf and cfrd and my daughter just turned 2 and we had sweat testing and then the genetic testing done on her starting at 6 months only because I have it and we had not gotten the chance to have my husband tested before I got pregnant.

It turned out she does have 2 copies of cf genes from me df508 and the one from my husband I cannot remember right now but combined it equals a mild case of cf as they put it, so far she is pancreatic sufficient but will continue to have stool test done about 2 times a year because the dr said it could change.

Sometimes it's really hard taking care of 2 people with cf and she is so active and sometimes it is hard to keep up with her especially when I feel sick, it's definitely not always easy. I also got really sick when I was pregnant and spent the last month in the hospital and then was induced at 36 weeks. The pregnancy also brought out the diabetes as well, so because of how my body handled the pregnancy I made the decision to have my tubes tied a few months ago (which was SOO hard to have to do at age 23) but I felt it would be best for me to not worry about getting pregnant again because I don't want to risk another pregnancy as I just want to be here as long as possible for my daughter.. and honestly I think about how hard it would be having 2 of her , and lol i seriously dont think I could handle it just because just she wears me out...although I would love to if I didnt have cf and ALSo the fact that it would be 50/50 possibility of another baby having cf...

by the way i am a stay at home mother now , when I went back to work 3 months after having her I kept getting sick and then finally decided I couldnt work anymore it was too much and also was advised by my dr to stay at home... I was awarded ssdi a year ago and only waited 2 months for my response which was SOOOO unexpected. So I encourage you to at least apply for it and for anyone else to as well who is considering it as it really was a quick and easy process, not much at all like I had imagined and that's what had made me wait so long to finally apply...

anyhow please feel free to message me, it's really hard to find other mothers that have a child with cf that have it themselves.
 
E

EmilysMomma

New member
Looks like I'm part of the "Families

Hi there I am so sorry , I know exactly how you feel. I have cf and cfrd and my daughter just turned 2 and we had sweat testing and then the genetic testing done on her starting at 6 months only because I have it and we had not gotten the chance to have my husband tested before I got pregnant.

It turned out she does have 2 copies of cf genes from me df508 and the one from my husband I cannot remember right now but combined it equals a mild case of cf as they put it, so far she is pancreatic sufficient but will continue to have stool test done about 2 times a year because the dr said it could change.

Sometimes it's really hard taking care of 2 people with cf and she is so active and sometimes it is hard to keep up with her especially when I feel sick, it's definitely not always easy. I also got really sick when I was pregnant and spent the last month in the hospital and then was induced at 36 weeks. The pregnancy also brought out the diabetes as well, so because of how my body handled the pregnancy I made the decision to have my tubes tied a few months ago (which was SOO hard to have to do at age 23) but I felt it would be best for me to not worry about getting pregnant again because I don't want to risk another pregnancy as I just want to be here as long as possible for my daughter.. and honestly I think about how hard it would be having 2 of her , and lol i seriously dont think I could handle it just because just she wears me out...although I would love to if I didnt have cf and ALSo the fact that it would be 50/50 possibility of another baby having cf...

by the way i am a stay at home mother now , when I went back to work 3 months after having her I kept getting sick and then finally decided I couldnt work anymore it was too much and also was advised by my dr to stay at home... I was awarded ssdi a year ago and only waited 2 months for my response which was SOOOO unexpected. So I encourage you to at least apply for it and for anyone else to as well who is considering it as it really was a quick and easy process, not much at all like I had imagined and that's what had made me wait so long to finally apply...

anyhow please feel free to message me, it's really hard to find other mothers that have a child with cf that have it themselves.
 
E

EmilysMomma

New member
Looks like I'm part of the "Families

Hi there I am so sorry , I know exactly how you feel. I have cf and cfrd and my daughter just turned 2 and we had sweat testing and then the genetic testing done on her starting at 6 months only because I have it and we had not gotten the chance to have my husband tested before I got pregnant.

It turned out she does have 2 copies of cf genes from me df508 and the one from my husband I cannot remember right now but combined it equals a mild case of cf as they put it, so far she is pancreatic sufficient but will continue to have stool test done about 2 times a year because the dr said it could change.

Sometimes it's really hard taking care of 2 people with cf and she is so active and sometimes it is hard to keep up with her especially when I feel sick, it's definitely not always easy. I also got really sick when I was pregnant and spent the last month in the hospital and then was induced at 36 weeks. The pregnancy also brought out the diabetes as well, so because of how my body handled the pregnancy I made the decision to have my tubes tied a few months ago (which was SOO hard to have to do at age 23) but I felt it would be best for me to not worry about getting pregnant again because I don't want to risk another pregnancy as I just want to be here as long as possible for my daughter.. and honestly I think about how hard it would be having 2 of her , and lol i seriously dont think I could handle it just because just she wears me out...although I would love to if I didnt have cf and ALSo the fact that it would be 50/50 possibility of another baby having cf...

by the way i am a stay at home mother now , when I went back to work 3 months after having her I kept getting sick and then finally decided I couldnt work anymore it was too much and also was advised by my dr to stay at home... I was awarded ssdi a year ago and only waited 2 months for my response which was SOOOO unexpected. So I encourage you to at least apply for it and for anyone else to as well who is considering it as it really was a quick and easy process, not much at all like I had imagined and that's what had made me wait so long to finally apply...

anyhow please feel free to message me, it's really hard to find other mothers that have a child with cf that have it themselves.
 
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