I'm desperate for hope

[jennastroitzel]

First all all, congrats on the birth of your baby girl! Second, I always say that the only thing predictable about CF is that it is unpredictable. There is a wide variation in the severity of people's disease even if the mutation is the same. I have dF508 mutation and am a relatively healthy (ish!) 32 year old. I do have the occasional problem, and sometimes it can last a while, but I have a good quality of life I think. Nobody knows what path your daughter will take, but whatever path that is, live each day as it comes and you should find it less draining emotionally. Worrying about each day really eats into your emotional reserves.

Enjoy your bundle of joy <img src="i/expressions/face-icon-small-smile.gif" border="0">

jenna x

 

[jennastroitzel]

First all all, congrats on the birth of your baby girl! Second, I always say that the only thing predictable about CF is that it is unpredictable. There is a wide variation in the severity of people's disease even if the mutation is the same. I have dF508 mutation and am a relatively healthy (ish!) 32 year old. I do have the occasional problem, and sometimes it can last a while, but I have a good quality of life I think. Nobody knows what path your daughter will take, but whatever path that is, live each day as it comes and you should find it less draining emotionally. Worrying about each day really eats into your emotional reserves.

Enjoy your bundle of joy <img src="i/expressions/face-icon-small-smile.gif" border="0">

jenna x

 

[jennastroitzel]

First all all, congrats on the birth of your baby girl! Second, I always say that the only thing predictable about CF is that it is unpredictable. There is a wide variation in the severity of people's disease even if the mutation is the same. I have dF508 mutation and am a relatively healthy (ish!) 32 year old. I do have the occasional problem, and sometimes it can last a while, but I have a good quality of life I think. Nobody knows what path your daughter will take, but whatever path that is, live each day as it comes and you should find it less draining emotionally. Worrying about each day really eats into your emotional reserves.

Enjoy your bundle of joy <img src="i/expressions/face-icon-small-smile.gif" border="0">

jenna x

 

[jennastroitzel]

First all all, congrats on the birth of your baby girl! Second, I always say that the only thing predictable about CF is that it is unpredictable. There is a wide variation in the severity of people's disease even if the mutation is the same. I have dF508 mutation and am a relatively healthy (ish!) 32 year old. I do have the occasional problem, and sometimes it can last a while, but I have a good quality of life I think. Nobody knows what path your daughter will take, but whatever path that is, live each day as it comes and you should find it less draining emotionally. Worrying about each day really eats into your emotional reserves.

Enjoy your bundle of joy <img src="i/expressions/face-icon-small-smile.gif" border="0">

jenna x

 

[jennastroitzel]

First all all, congrats on the birth of your baby girl! Second, I always say that the only thing predictable about CF is that it is unpredictable. There is a wide variation in the severity of people's disease even if the mutation is the same. I have dF508 mutation and am a relatively healthy (ish!) 32 year old. I do have the occasional problem, and sometimes it can last a while, but I have a good quality of life I think. Nobody knows what path your daughter will take, but whatever path that is, live each day as it comes and you should find it less draining emotionally. Worrying about each day really eats into your emotional reserves.

Enjoy your bundle of joy <img src="i/expressions/face-icon-small-smile.gif" border="0">

jenna x

 

[aannddd]

Laura,

I was in your position one year ago. My son just turned 1 on the 15th of August. He was diagnoised at 5 days old.

When our son was diagnoised, we were told that the hope is that with the benefits of the current medical interventions that has tje current generation of CFers to a median life expectancy of 37, that a child who is born today and benefits from the medical technology from birth, will hopefully have median life expectancy of 50-60. That assumes no advances in the medical field. That statement gave me a lot of hope.

Please try to remember your child was diagnoised as a newborn, which means the opportunity to begin treatment now. My husband had to point out to me over and over again, that if it was not for newborn screening it may have been years before we found out, especially if our child has a case with more mild lung issues.

Our child is pancreatic insufficent, no detectable function at all, but growing very well. He is above the 50% for height and weight. I nursed him exclusively for the first 6 months, added solids at that point , and continued to nurse him through his first birthday. I have made an art out of creating a high fat, high calorie baby food diet. Please let me know if I can offer so tips when you get to that point.

Good luck and it is not a death sentence and things will get easier. One more thing my husband told me over and over again that helped...You will still have all of the joys and milestones that you have experienced with your other child and each one will seem that much more special.

Andrea

 

[aannddd]

Laura,

I was in your position one year ago. My son just turned 1 on the 15th of August. He was diagnoised at 5 days old.

When our son was diagnoised, we were told that the hope is that with the benefits of the current medical interventions that has tje current generation of CFers to a median life expectancy of 37, that a child who is born today and benefits from the medical technology from birth, will hopefully have median life expectancy of 50-60. That assumes no advances in the medical field. That statement gave me a lot of hope.

Please try to remember your child was diagnoised as a newborn, which means the opportunity to begin treatment now. My husband had to point out to me over and over again, that if it was not for newborn screening it may have been years before we found out, especially if our child has a case with more mild lung issues.

Our child is pancreatic insufficent, no detectable function at all, but growing very well. He is above the 50% for height and weight. I nursed him exclusively for the first 6 months, added solids at that point , and continued to nurse him through his first birthday. I have made an art out of creating a high fat, high calorie baby food diet. Please let me know if I can offer so tips when you get to that point.

Good luck and it is not a death sentence and things will get easier. One more thing my husband told me over and over again that helped...You will still have all of the joys and milestones that you have experienced with your other child and each one will seem that much more special.

Andrea

 

[aannddd]

Laura,

I was in your position one year ago. My son just turned 1 on the 15th of August. He was diagnoised at 5 days old.

When our son was diagnoised, we were told that the hope is that with the benefits of the current medical interventions that has tje current generation of CFers to a median life expectancy of 37, that a child who is born today and benefits from the medical technology from birth, will hopefully have median life expectancy of 50-60. That assumes no advances in the medical field. That statement gave me a lot of hope.

Please try to remember your child was diagnoised as a newborn, which means the opportunity to begin treatment now. My husband had to point out to me over and over again, that if it was not for newborn screening it may have been years before we found out, especially if our child has a case with more mild lung issues.

Our child is pancreatic insufficent, no detectable function at all, but growing very well. He is above the 50% for height and weight. I nursed him exclusively for the first 6 months, added solids at that point , and continued to nurse him through his first birthday. I have made an art out of creating a high fat, high calorie baby food diet. Please let me know if I can offer so tips when you get to that point.

Good luck and it is not a death sentence and things will get easier. One more thing my husband told me over and over again that helped...You will still have all of the joys and milestones that you have experienced with your other child and each one will seem that much more special.

Andrea

 

[aannddd]

Laura,

I was in your position one year ago. My son just turned 1 on the 15th of August. He was diagnoised at 5 days old.

When our son was diagnoised, we were told that the hope is that with the benefits of the current medical interventions that has tje current generation of CFers to a median life expectancy of 37, that a child who is born today and benefits from the medical technology from birth, will hopefully have median life expectancy of 50-60. That assumes no advances in the medical field. That statement gave me a lot of hope.

Please try to remember your child was diagnoised as a newborn, which means the opportunity to begin treatment now. My husband had to point out to me over and over again, that if it was not for newborn screening it may have been years before we found out, especially if our child has a case with more mild lung issues.

Our child is pancreatic insufficent, no detectable function at all, but growing very well. He is above the 50% for height and weight. I nursed him exclusively for the first 6 months, added solids at that point , and continued to nurse him through his first birthday. I have made an art out of creating a high fat, high calorie baby food diet. Please let me know if I can offer so tips when you get to that point.

Good luck and it is not a death sentence and things will get easier. One more thing my husband told me over and over again that helped...You will still have all of the joys and milestones that you have experienced with your other child and each one will seem that much more special.

Andrea

 

[aannddd]

Laura,

I was in your position one year ago. My son just turned 1 on the 15th of August. He was diagnoised at 5 days old.

When our son was diagnoised, we were told that the hope is that with the benefits of the current medical interventions that has tje current generation of CFers to a median life expectancy of 37, that a child who is born today and benefits from the medical technology from birth, will hopefully have median life expectancy of 50-60. That assumes no advances in the medical field. That statement gave me a lot of hope.

Please try to remember your child was diagnoised as a newborn, which means the opportunity to begin treatment now. My husband had to point out to me over and over again, that if it was not for newborn screening it may have been years before we found out, especially if our child has a case with more mild lung issues.

Our child is pancreatic insufficent, no detectable function at all, but growing very well. He is above the 50% for height and weight. I nursed him exclusively for the first 6 months, added solids at that point , and continued to nurse him through his first birthday. I have made an art out of creating a high fat, high calorie baby food diet. Please let me know if I can offer so tips when you get to that point.

Good luck and it is not a death sentence and things will get easier. One more thing my husband told me over and over again that helped...You will still have all of the joys and milestones that you have experienced with your other child and each one will seem that much more special.

Andrea

 

[EmilysMom]

When Emily was born, we were told she had a 50/50 shot of seeing her 18th birthday......well she is 23, a junior in college and engaged to be married, so anything is possible. Hang in there!

 

[EmilysMom]

When Emily was born, we were told she had a 50/50 shot of seeing her 18th birthday......well she is 23, a junior in college and engaged to be married, so anything is possible. Hang in there!

 

[EmilysMom]

When Emily was born, we were told she had a 50/50 shot of seeing her 18th birthday......well she is 23, a junior in college and engaged to be married, so anything is possible. Hang in there!

 

[EmilysMom]

When Emily was born, we were told she had a 50/50 shot of seeing her 18th birthday......well she is 23, a junior in college and engaged to be married, so anything is possible. Hang in there!

 

[EmilysMom]

When Emily was born, we were told she had a 50/50 shot of seeing her 18th birthday......well she is 23, a junior in college and engaged to be married, so anything is possible. Hang in there!

 

[65roses4Daegan]

<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 was asn't 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 was leaving the hospital until I had some answers... my baby boy wouldn't move! I wanted to know why! for 3 days we sit 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 to 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 I had a nurse walk into my room and tell me the doctor was on the phone, so I go to pick the phone up and all the nurses on the 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 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 to 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!
I am 18 and very healthy!!! It does happen! My son is 2 and yes he does get short of breath and can't do all the things the other kids do and is smaller than everyother kid and does get sick easier, but he is a normal healthy 2 year old! It may seem like it's the worst thing in the world~ yeah I know that feeling~ but it is well worth it! Just enjoy everyday you have with your child! Live everyday to it's fullest! One piece of advice from a CF patient myself.... don't let your child be a guinea pig.... you'll regret it in the end! It makes it worse! I hated it! I have scars all over me from being pocked in pribed.... don't put your kid through what I went through! It is soooo embarrasing what I have to deal with now! I look strung out... like I shoot up... my arms are so bruised! And now when I am really sick they can hardly get a needle in my veins! It's really not worth it! Don't put your kid through that! PLEASE!!! From the bottom of my heart!

Love always~
Aubre' Miller

 

[65roses4Daegan]

<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 was asn't 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 was leaving the hospital until I had some answers... my baby boy wouldn't move! I wanted to know why! for 3 days we sit 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 to 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 I had a nurse walk into my room and tell me the doctor was on the phone, so I go to pick the phone up and all the nurses on the 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 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 to 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!
I am 18 and very healthy!!! It does happen! My son is 2 and yes he does get short of breath and can't do all the things the other kids do and is smaller than everyother kid and does get sick easier, but he is a normal healthy 2 year old! It may seem like it's the worst thing in the world~ yeah I know that feeling~ but it is well worth it! Just enjoy everyday you have with your child! Live everyday to it's fullest! One piece of advice from a CF patient myself.... don't let your child be a guinea pig.... you'll regret it in the end! It makes it worse! I hated it! I have scars all over me from being pocked in pribed.... don't put your kid through what I went through! It is soooo embarrasing what I have to deal with now! I look strung out... like I shoot up... my arms are so bruised! And now when I am really sick they can hardly get a needle in my veins! It's really not worth it! Don't put your kid through that! PLEASE!!! From the bottom of my heart!

Love always~
Aubre' Miller

 

[65roses4Daegan]

<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 was asn't 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 was leaving the hospital until I had some answers... my baby boy wouldn't move! I wanted to know why! for 3 days we sit 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 to 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 I had a nurse walk into my room and tell me the doctor was on the phone, so I go to pick the phone up and all the nurses on the 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 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 to 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!
I am 18 and very healthy!!! It does happen! My son is 2 and yes he does get short of breath and can't do all the things the other kids do and is smaller than everyother kid and does get sick easier, but he is a normal healthy 2 year old! It may seem like it's the worst thing in the world~ yeah I know that feeling~ but it is well worth it! Just enjoy everyday you have with your child! Live everyday to it's fullest! One piece of advice from a CF patient myself.... don't let your child be a guinea pig.... you'll regret it in the end! It makes it worse! I hated it! I have scars all over me from being pocked in pribed.... don't put your kid through what I went through! It is soooo embarrasing what I have to deal with now! I look strung out... like I shoot up... my arms are so bruised! And now when I am really sick they can hardly get a needle in my veins! It's really not worth it! Don't put your kid through that! PLEASE!!! From the bottom of my heart!

Love always~
Aubre' Miller

 

[65roses4Daegan]

<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 was asn't 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 was leaving the hospital until I had some answers... my baby boy wouldn't move! I wanted to know why! for 3 days we sit 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 to 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 I had a nurse walk into my room and tell me the doctor was on the phone, so I go to pick the phone up and all the nurses on the 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 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 to 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!
I am 18 and very healthy!!! It does happen! My son is 2 and yes he does get short of breath and can't do all the things the other kids do and is smaller than everyother kid and does get sick easier, but he is a normal healthy 2 year old! It may seem like it's the worst thing in the world~ yeah I know that feeling~ but it is well worth it! Just enjoy everyday you have with your child! Live everyday to it's fullest! One piece of advice from a CF patient myself.... don't let your child be a guinea pig.... you'll regret it in the end! It makes it worse! I hated it! I have scars all over me from being pocked in pribed.... don't put your kid through what I went through! It is soooo embarrasing what I have to deal with now! I look strung out... like I shoot up... my arms are so bruised! And now when I am really sick they can hardly get a needle in my veins! It's really not worth it! Don't put your kid through that! PLEASE!!! From the bottom of my heart!

Love always~
Aubre' Miller

 

[65roses4Daegan]

<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 was asn't 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 was leaving the hospital until I had some answers... my baby boy wouldn't move! I wanted to know why! for 3 days we sit 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 to 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 I had a nurse walk into my room and tell me the doctor was on the phone, so I go to pick the phone up and all the nurses on the 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 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 to 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!
I am 18 and very healthy!!! It does happen! My son is 2 and yes he does get short of breath and can't do all the things the other kids do and is smaller than everyother kid and does get sick easier, but he is a normal healthy 2 year old! It may seem like it's the worst thing in the world~ yeah I know that feeling~ but it is well worth it! Just enjoy everyday you have with your child! Live everyday to it's fullest! One piece of advice from a CF patient myself.... don't let your child be a guinea pig.... you'll regret it in the end! It makes it worse! I hated it! I have scars all over me from being pocked in pribed.... don't put your kid through what I went through! It is soooo embarrasing what I have to deal with now! I look strung out... like I shoot up... my arms are so bruised! And now when I am really sick they can hardly get a needle in my veins! It's really not worth it! Don't put your kid through that! PLEASE!!! From the bottom of my heart!

Love always~
Aubre' Miller