the new girl

livingonhope · Sep 20, 2007

Hi to you all. I have randomly gotten on here and read some things that have been posted and finally decided to join. My daughter was diagnosed when she was 5 months old with cf (double delta F508) and she will be 2 the first of October. She basically just screamed all the time and her belly was so large and the rest of her was so small. I just started doing my own research, thinking it was the formula I was using or something on the lines of colic....I just knew something wasn't right. After switching peds 3 times (2 of which told me nothing was wrong with her I was just a new mother) I finally showed up on the door of a pedicatrician about an hour away from where I live and told her I wasn't leaving until she helped my child. That was one of the worst days of my life and one of the best days. My husband and I found out that she had cf, but we also saw our little girl take a bottle for the first time (with enzymes) and get full enough that she was pleasant and restful and a new child. It was amazing. The journey has been wild.....ofcourse after bringing her home from Vanderbilt Childrens' Hospital we were faced a month later with pseudo.....something that hurt worse than the cf diagnosis...but amazingly she has never had any symptoms or signs from it and her next culture came back negative for pseudo and has been positive for MRSA ever since. She hasn't had any lungs problems since diagnosis. She doesn't even have a cough. She is a tiny little thing (we just reached 10th percentile) but so active and full of life! I just don't get how a little girl so sick can be so happy and look so good. My husband and I do chest therapy with her religiously...we have never missed a 20 minute session twice a day since her diagnosis. She takes vitamins and every other month she is on TOBI. Those are the only options we have really been exposed to with her cf team. I try so hard not to...but I just live on pins and needles every day like I'm just waiting for her to spike a fever or cough....and the site of even a clear runny nose just sends me into an immediate state of nervousness and worry like all of these horrible things that have been living in her lungs are fixing to just take over her. Am I crazy?? Sorry for the lengthy post.....I guess I just really never talk about this.

-Laney
mother to Ada 2yo with cf

livingonhope · Sep 20, 2007

Hi to you all. I have randomly gotten on here and read some things that have been posted and finally decided to join. My daughter was diagnosed when she was 5 months old with cf (double delta F508) and she will be 2 the first of October. She basically just screamed all the time and her belly was so large and the rest of her was so small. I just started doing my own research, thinking it was the formula I was using or something on the lines of colic....I just knew something wasn't right. After switching peds 3 times (2 of which told me nothing was wrong with her I was just a new mother) I finally showed up on the door of a pedicatrician about an hour away from where I live and told her I wasn't leaving until she helped my child. That was one of the worst days of my life and one of the best days. My husband and I found out that she had cf, but we also saw our little girl take a bottle for the first time (with enzymes) and get full enough that she was pleasant and restful and a new child. It was amazing. The journey has been wild.....ofcourse after bringing her home from Vanderbilt Childrens' Hospital we were faced a month later with pseudo.....something that hurt worse than the cf diagnosis...but amazingly she has never had any symptoms or signs from it and her next culture came back negative for pseudo and has been positive for MRSA ever since. She hasn't had any lungs problems since diagnosis. She doesn't even have a cough. She is a tiny little thing (we just reached 10th percentile) but so active and full of life! I just don't get how a little girl so sick can be so happy and look so good. My husband and I do chest therapy with her religiously...we have never missed a 20 minute session twice a day since her diagnosis. She takes vitamins and every other month she is on TOBI. Those are the only options we have really been exposed to with her cf team. I try so hard not to...but I just live on pins and needles every day like I'm just waiting for her to spike a fever or cough....and the site of even a clear runny nose just sends me into an immediate state of nervousness and worry like all of these horrible things that have been living in her lungs are fixing to just take over her. Am I crazy?? Sorry for the lengthy post.....I guess I just really never talk about this.

-Laney
mother to Ada 2yo with cf

livingonhope · Sep 20, 2007

Hi to you all. I have randomly gotten on here and read some things that have been posted and finally decided to join. My daughter was diagnosed when she was 5 months old with cf (double delta F508) and she will be 2 the first of October. She basically just screamed all the time and her belly was so large and the rest of her was so small. I just started doing my own research, thinking it was the formula I was using or something on the lines of colic....I just knew something wasn't right. After switching peds 3 times (2 of which told me nothing was wrong with her I was just a new mother) I finally showed up on the door of a pedicatrician about an hour away from where I live and told her I wasn't leaving until she helped my child. That was one of the worst days of my life and one of the best days. My husband and I found out that she had cf, but we also saw our little girl take a bottle for the first time (with enzymes) and get full enough that she was pleasant and restful and a new child. It was amazing. The journey has been wild.....ofcourse after bringing her home from Vanderbilt Childrens' Hospital we were faced a month later with pseudo.....something that hurt worse than the cf diagnosis...but amazingly she has never had any symptoms or signs from it and her next culture came back negative for pseudo and has been positive for MRSA ever since. She hasn't had any lungs problems since diagnosis. She doesn't even have a cough. She is a tiny little thing (we just reached 10th percentile) but so active and full of life! I just don't get how a little girl so sick can be so happy and look so good. My husband and I do chest therapy with her religiously...we have never missed a 20 minute session twice a day since her diagnosis. She takes vitamins and every other month she is on TOBI. Those are the only options we have really been exposed to with her cf team. I try so hard not to...but I just live on pins and needles every day like I'm just waiting for her to spike a fever or cough....and the site of even a clear runny nose just sends me into an immediate state of nervousness and worry like all of these horrible things that have been living in her lungs are fixing to just take over her. Am I crazy?? Sorry for the lengthy post.....I guess I just really never talk about this.

-Laney
mother to Ada 2yo with cf

livingonhope · Sep 20, 2007

Hi to you all. I have randomly gotten on here and read some things that have been posted and finally decided to join. My daughter was diagnosed when she was 5 months old with cf (double delta F508) and she will be 2 the first of October. She basically just screamed all the time and her belly was so large and the rest of her was so small. I just started doing my own research, thinking it was the formula I was using or something on the lines of colic....I just knew something wasn't right. After switching peds 3 times (2 of which told me nothing was wrong with her I was just a new mother) I finally showed up on the door of a pedicatrician about an hour away from where I live and told her I wasn't leaving until she helped my child. That was one of the worst days of my life and one of the best days. My husband and I found out that she had cf, but we also saw our little girl take a bottle for the first time (with enzymes) and get full enough that she was pleasant and restful and a new child. It was amazing. The journey has been wild.....ofcourse after bringing her home from Vanderbilt Childrens' Hospital we were faced a month later with pseudo.....something that hurt worse than the cf diagnosis...but amazingly she has never had any symptoms or signs from it and her next culture came back negative for pseudo and has been positive for MRSA ever since. She hasn't had any lungs problems since diagnosis. She doesn't even have a cough. She is a tiny little thing (we just reached 10th percentile) but so active and full of life! I just don't get how a little girl so sick can be so happy and look so good. My husband and I do chest therapy with her religiously...we have never missed a 20 minute session twice a day since her diagnosis. She takes vitamins and every other month she is on TOBI. Those are the only options we have really been exposed to with her cf team. I try so hard not to...but I just live on pins and needles every day like I'm just waiting for her to spike a fever or cough....and the site of even a clear runny nose just sends me into an immediate state of nervousness and worry like all of these horrible things that have been living in her lungs are fixing to just take over her. Am I crazy?? Sorry for the lengthy post.....I guess I just really never talk about this.

-Laney
mother to Ada 2yo with cf

livingonhope · Sep 20, 2007

Hi to you all. I have randomly gotten on here and read some things that have been posted and finally decided to join. My daughter was diagnosed when she was 5 months old with cf (double delta F508) and she will be 2 the first of October. She basically just screamed all the time and her belly was so large and the rest of her was so small. I just started doing my own research, thinking it was the formula I was using or something on the lines of colic....I just knew something wasn't right. After switching peds 3 times (2 of which told me nothing was wrong with her I was just a new mother) I finally showed up on the door of a pedicatrician about an hour away from where I live and told her I wasn't leaving until she helped my child. That was one of the worst days of my life and one of the best days. My husband and I found out that she had cf, but we also saw our little girl take a bottle for the first time (with enzymes) and get full enough that she was pleasant and restful and a new child. It was amazing. The journey has been wild.....ofcourse after bringing her home from Vanderbilt Childrens' Hospital we were faced a month later with pseudo.....something that hurt worse than the cf diagnosis...but amazingly she has never had any symptoms or signs from it and her next culture came back negative for pseudo and has been positive for MRSA ever since. She hasn't had any lungs problems since diagnosis. She doesn't even have a cough. She is a tiny little thing (we just reached 10th percentile) but so active and full of life! I just don't get how a little girl so sick can be so happy and look so good. My husband and I do chest therapy with her religiously...we have never missed a 20 minute session twice a day since her diagnosis. She takes vitamins and every other month she is on TOBI. Those are the only options we have really been exposed to with her cf team. I try so hard not to...but I just live on pins and needles every day like I'm just waiting for her to spike a fever or cough....and the site of even a clear runny nose just sends me into an immediate state of nervousness and worry like all of these horrible things that have been living in her lungs are fixing to just take over her. Am I crazy?? Sorry for the lengthy post.....I guess I just really never talk about this.

-Laney
mother to Ada 2yo with cf

dyza · Sep 20, 2007

Crazy! dont be daft. Concerned, loving, devoted...I could go on.
Welcome Laney.
Craig

dyza · Sep 20, 2007

Crazy! dont be daft. Concerned, loving, devoted...I could go on.
Welcome Laney.
Craig

dyza · Sep 20, 2007

Crazy! dont be daft. Concerned, loving, devoted...I could go on.
Welcome Laney.
Craig

dyza · Sep 20, 2007

Crazy! dont be daft. Concerned, loving, devoted...I could go on.
Welcome Laney.
Craig

dyza · Sep 20, 2007

Crazy! dont be daft. Concerned, loving, devoted...I could go on.
Welcome Laney.
Craig

Rebjane · Sep 20, 2007

Welcome! Sounds like you are a wonderful mom. This site is a great support system. I remember when I was talking with a CF nurse asking all my questions about CF and I was told CF'ers can't be near each other , thought how that just sucked. This site is important, who better understands than us?

Rebjane · Sep 20, 2007

Welcome! Sounds like you are a wonderful mom. This site is a great support system. I remember when I was talking with a CF nurse asking all my questions about CF and I was told CF'ers can't be near each other , thought how that just sucked. This site is important, who better understands than us?

Rebjane · Sep 20, 2007

Welcome! Sounds like you are a wonderful mom. This site is a great support system. I remember when I was talking with a CF nurse asking all my questions about CF and I was told CF'ers can't be near each other , thought how that just sucked. This site is important, who better understands than us?

Rebjane · Sep 20, 2007

Welcome! Sounds like you are a wonderful mom. This site is a great support system. I remember when I was talking with a CF nurse asking all my questions about CF and I was told CF'ers can't be near each other , thought how that just sucked. This site is important, who better understands than us?

Rebjane · Sep 20, 2007

Welcome! Sounds like you are a wonderful mom. This site is a great support system. I remember when I was talking with a CF nurse asking all my questions about CF and I was told CF'ers can't be near each other , thought how that just sucked. This site is important, who better understands than us?

lilismom · Sep 20, 2007