soooo SCARED DEATH not sure where to go from here

[CDBRADEN2004]

Hello to everyone:

Unfortunatley my family has joined the club. In November my first and only daughter went through a series of sweat test and sadley enough she had tested positive with both the sweat test and the gentic testing, she has 2 of the Delta F508 genes. I am struggling so much inside and am looking for someone who would share some stories with our family so we could have some hope that things will get back to "normal". I am 25 and my beautiful daughter Emily Ashley is 16 months tomorrow she was only 13 months at the time. I knew from about 3 months old that something just was not right with her health, my husband would get so mad and say "quit trying to find things wrong her" but I just knew that a baby that young isn't suppose to be sick all the time. She always seemed to have a cold but the cold would last for 2 months sometimes. She has never been admitted to the hospital and her doctor is optimistic that she will be okay but won't answer the questions I have he just always says "there are so many advancements now they are living well into there 20-40". I just would like so bad to make it all go away, I know that sounds nieve but it just hurts sooo bad everytime I look at her I can't help but start to think about how long is she going to be here? how will I live without her? Is she suffering right now? am I taking good enough care of her? I don't know anyone who has CF or anyone who has dealt with someone who has it. I have never felt so lost and helpless in my life. So if someone would please share there stories or let me know that how life is for them living with CF it would REALLY help me.

Christie Braden
Edmonton, AB

 

[CDBRADEN2004]

Hello to everyone:

Unfortunatley my family has joined the club. In November my first and only daughter went through a series of sweat test and sadley enough she had tested positive with both the sweat test and the gentic testing, she has 2 of the Delta F508 genes. I am struggling so much inside and am looking for someone who would share some stories with our family so we could have some hope that things will get back to "normal". I am 25 and my beautiful daughter Emily Ashley is 16 months tomorrow she was only 13 months at the time. I knew from about 3 months old that something just was not right with her health, my husband would get so mad and say "quit trying to find things wrong her" but I just knew that a baby that young isn't suppose to be sick all the time. She always seemed to have a cold but the cold would last for 2 months sometimes. She has never been admitted to the hospital and her doctor is optimistic that she will be okay but won't answer the questions I have he just always says "there are so many advancements now they are living well into there 20-40". I just would like so bad to make it all go away, I know that sounds nieve but it just hurts sooo bad everytime I look at her I can't help but start to think about how long is she going to be here? how will I live without her? Is she suffering right now? am I taking good enough care of her? I don't know anyone who has CF or anyone who has dealt with someone who has it. I have never felt so lost and helpless in my life. So if someone would please share there stories or let me know that how life is for them living with CF it would REALLY help me.

Christie Braden
Edmonton, AB

 

[CDBRADEN2004]

Hello to everyone:

Unfortunatley my family has joined the club. In November my first and only daughter went through a series of sweat test and sadley enough she had tested positive with both the sweat test and the gentic testing, she has 2 of the Delta F508 genes. I am struggling so much inside and am looking for someone who would share some stories with our family so we could have some hope that things will get back to "normal". I am 25 and my beautiful daughter Emily Ashley is 16 months tomorrow she was only 13 months at the time. I knew from about 3 months old that something just was not right with her health, my husband would get so mad and say "quit trying to find things wrong her" but I just knew that a baby that young isn't suppose to be sick all the time. She always seemed to have a cold but the cold would last for 2 months sometimes. She has never been admitted to the hospital and her doctor is optimistic that she will be okay but won't answer the questions I have he just always says "there are so many advancements now they are living well into there 20-40". I just would like so bad to make it all go away, I know that sounds nieve but it just hurts sooo bad everytime I look at her I can't help but start to think about how long is she going to be here? how will I live without her? Is she suffering right now? am I taking good enough care of her? I don't know anyone who has CF or anyone who has dealt with someone who has it. I have never felt so lost and helpless in my life. So if someone would please share there stories or let me know that how life is for them living with CF it would REALLY help me.

Christie Braden
Edmonton, AB

 

[lildevil4eva]

Hi Christie
My names Lesley i have a daughter with cf and understand exactly how you are feeling. Its like the bottom has fallen out of your world and you are feeling like you are grieving for her life now even when she is so young and healthy looking. I think it is all a phase that we go through until we can come to terms with what our futures hold.

I made a concious decision that my daughter would lead as normal a life as was possible and she does we just fit our lives in around the regime of treatments and medications. Yes sometimes we get fed up with it and wish it would go away, and yes when we go on holiday it would be nice to have a holiday from cf but we can't. The treatments and medications just become part of the routine and life will become "normal" until extra treatments for infections are thrown in.

I was scared to have children because i could'nt bare the thought of something being wrong with them and i cannot deal with vomit. Well loook at me now Shona used to vomit everyday when she was a baby and she was diagnosed with cf at 10months old after me being protrayed as and over anxious mum.

you will look back in a years time and think how far you have come, how life with a healthy cf is normal and how you have learnt to cope with things you though you never would be able to cope with.

My daughter is now 13 and treatment has come a long way in those years. I am proud of my daughter and myself for the things we have learnt and do at home to keep her out of hospital. To you at this moment things are very frightening but i can asure you that if you keep your daughter well she has a great future ahead of her. I hope this is of some comfort to you I have sent you a personal message with my email address, please feel free to contact me at anytime just for a chat or advice. My daughter found your message and said i should reply to it as she was'nt sure of how to help you but she is now going to tell you in her words what life is like with cf.



Hi my names shona as my mum has already said i am 13yrs old. life for me varys day by day but i know that there is always the support i need from my family and my friends. i have a pretty normal life and manage to fit the routine of treatment into it. i have a social life which is full and fun which is quiet hard to believe considering the treatments and phsyio. my friends are very good and support me and understand that i need them. im not going to lie to you CF life is hard but as time goes by it comes more natural and things dont seem as scary as in the begining. you adjust, and life slips in around the medication. my health varys some days ill be running around like a headless chicken and others ill be sitting in the corner. life goes on. i do well at school and enjoy it. i am a normal teenager, rebelous, rude, ignorant, you know the usual.<img src="i/expressions/face-icon-small-smile.gif" border="0">


Cf is something i feel strongly about and i am always happy to explain and answer questions about it whenever anybody asks.

in all honesty i cant imagine my life without CF and i wouldnt particuly want a life without CF. its part of my personality and who i am and without it i dont think id have a identity. lifes a rollercoaster everybody has there ups and downs and all, there highs and there lows, and there falls, all you gotta do is pick yourself up and look back at how life used to be then look forward at how you want life to be and make it possible. its amazing the change that happens. life will seem bad now, of course it would for anybody, but one day youll look back and realise that this has made you stronger and that this is now part of your life. so dont worry about the future live life for today...

 

[lildevil4eva]

Hi Christie
My names Lesley i have a daughter with cf and understand exactly how you are feeling. Its like the bottom has fallen out of your world and you are feeling like you are grieving for her life now even when she is so young and healthy looking. I think it is all a phase that we go through until we can come to terms with what our futures hold.

I made a concious decision that my daughter would lead as normal a life as was possible and she does we just fit our lives in around the regime of treatments and medications. Yes sometimes we get fed up with it and wish it would go away, and yes when we go on holiday it would be nice to have a holiday from cf but we can't. The treatments and medications just become part of the routine and life will become "normal" until extra treatments for infections are thrown in.

I was scared to have children because i could'nt bare the thought of something being wrong with them and i cannot deal with vomit. Well loook at me now Shona used to vomit everyday when she was a baby and she was diagnosed with cf at 10months old after me being protrayed as and over anxious mum.

you will look back in a years time and think how far you have come, how life with a healthy cf is normal and how you have learnt to cope with things you though you never would be able to cope with.

My daughter is now 13 and treatment has come a long way in those years. I am proud of my daughter and myself for the things we have learnt and do at home to keep her out of hospital. To you at this moment things are very frightening but i can asure you that if you keep your daughter well she has a great future ahead of her. I hope this is of some comfort to you I have sent you a personal message with my email address, please feel free to contact me at anytime just for a chat or advice. My daughter found your message and said i should reply to it as she was'nt sure of how to help you but she is now going to tell you in her words what life is like with cf.



Hi my names shona as my mum has already said i am 13yrs old. life for me varys day by day but i know that there is always the support i need from my family and my friends. i have a pretty normal life and manage to fit the routine of treatment into it. i have a social life which is full and fun which is quiet hard to believe considering the treatments and phsyio. my friends are very good and support me and understand that i need them. im not going to lie to you CF life is hard but as time goes by it comes more natural and things dont seem as scary as in the begining. you adjust, and life slips in around the medication. my health varys some days ill be running around like a headless chicken and others ill be sitting in the corner. life goes on. i do well at school and enjoy it. i am a normal teenager, rebelous, rude, ignorant, you know the usual.<img src="i/expressions/face-icon-small-smile.gif" border="0">


Cf is something i feel strongly about and i am always happy to explain and answer questions about it whenever anybody asks.

in all honesty i cant imagine my life without CF and i wouldnt particuly want a life without CF. its part of my personality and who i am and without it i dont think id have a identity. lifes a rollercoaster everybody has there ups and downs and all, there highs and there lows, and there falls, all you gotta do is pick yourself up and look back at how life used to be then look forward at how you want life to be and make it possible. its amazing the change that happens. life will seem bad now, of course it would for anybody, but one day youll look back and realise that this has made you stronger and that this is now part of your life. so dont worry about the future live life for today...

 

[lildevil4eva]

Hi Christie
My names Lesley i have a daughter with cf and understand exactly how you are feeling. Its like the bottom has fallen out of your world and you are feeling like you are grieving for her life now even when she is so young and healthy looking. I think it is all a phase that we go through until we can come to terms with what our futures hold.

I made a concious decision that my daughter would lead as normal a life as was possible and she does we just fit our lives in around the regime of treatments and medications. Yes sometimes we get fed up with it and wish it would go away, and yes when we go on holiday it would be nice to have a holiday from cf but we can't. The treatments and medications just become part of the routine and life will become "normal" until extra treatments for infections are thrown in.

I was scared to have children because i could'nt bare the thought of something being wrong with them and i cannot deal with vomit. Well loook at me now Shona used to vomit everyday when she was a baby and she was diagnosed with cf at 10months old after me being protrayed as and over anxious mum.

you will look back in a years time and think how far you have come, how life with a healthy cf is normal and how you have learnt to cope with things you though you never would be able to cope with.

My daughter is now 13 and treatment has come a long way in those years. I am proud of my daughter and myself for the things we have learnt and do at home to keep her out of hospital. To you at this moment things are very frightening but i can asure you that if you keep your daughter well she has a great future ahead of her. I hope this is of some comfort to you I have sent you a personal message with my email address, please feel free to contact me at anytime just for a chat or advice. My daughter found your message and said i should reply to it as she was'nt sure of how to help you but she is now going to tell you in her words what life is like with cf.



Hi my names shona as my mum has already said i am 13yrs old. life for me varys day by day but i know that there is always the support i need from my family and my friends. i have a pretty normal life and manage to fit the routine of treatment into it. i have a social life which is full and fun which is quiet hard to believe considering the treatments and phsyio. my friends are very good and support me and understand that i need them. im not going to lie to you CF life is hard but as time goes by it comes more natural and things dont seem as scary as in the begining. you adjust, and life slips in around the medication. my health varys some days ill be running around like a headless chicken and others ill be sitting in the corner. life goes on. i do well at school and enjoy it. i am a normal teenager, rebelous, rude, ignorant, you know the usual.<img src="i/expressions/face-icon-small-smile.gif" border="0">


Cf is something i feel strongly about and i am always happy to explain and answer questions about it whenever anybody asks.

in all honesty i cant imagine my life without CF and i wouldnt particuly want a life without CF. its part of my personality and who i am and without it i dont think id have a identity. lifes a rollercoaster everybody has there ups and downs and all, there highs and there lows, and there falls, all you gotta do is pick yourself up and look back at how life used to be then look forward at how you want life to be and make it possible. its amazing the change that happens. life will seem bad now, of course it would for anybody, but one day youll look back and realise that this has made you stronger and that this is now part of your life. so dont worry about the future live life for today...

 

[seanpellis]

Just keep the faith and everything will be o.k. I was new to it as well with my family being African American it is very rare for us and when they told me what the disease was I 'd never heard of it befor in my life. I looked through medical books to see exactly what it was and if the books are old they can be very discouraging. Everything will be o.k. Believe me things will get easier with time. Keep the faith.

 

[seanpellis]

Just keep the faith and everything will be o.k. I was new to it as well with my family being African American it is very rare for us and when they told me what the disease was I 'd never heard of it befor in my life. I looked through medical books to see exactly what it was and if the books are old they can be very discouraging. Everything will be o.k. Believe me things will get easier with time. Keep the faith.

 

[seanpellis]

Just keep the faith and everything will be o.k. I was new to it as well with my family being African American it is very rare for us and when they told me what the disease was I 'd never heard of it befor in my life. I looked through medical books to see exactly what it was and if the books are old they can be very discouraging. Everything will be o.k. Believe me things will get easier with time. Keep the faith.

 

[zoe4life]

Christie,

So sorry that you have gotten the cf diagnosis. It is a really hard one to accept when you are looking into your 1 yr. old daughters eyes. I felt very much the way you described when Zoe was diagnosed on the eve of her 1st b-day. Go back in my blogs 'Zoe4Lfe' and you can read our story. It sounds like it is similar, which actually is not uncommon with cf. It will get better. I still cry often. We do everything in our power though to make sure she gets the best medical care. We also are involved in fundraising for the CFF, that helps to make us not feel quite so powerless.
Sorry again, but you are in the right place, I have received most of my emotional help from the people on this site. They are wonderful!

 

[zoe4life]

Christie,

So sorry that you have gotten the cf diagnosis. It is a really hard one to accept when you are looking into your 1 yr. old daughters eyes. I felt very much the way you described when Zoe was diagnosed on the eve of her 1st b-day. Go back in my blogs 'Zoe4Lfe' and you can read our story. It sounds like it is similar, which actually is not uncommon with cf. It will get better. I still cry often. We do everything in our power though to make sure she gets the best medical care. We also are involved in fundraising for the CFF, that helps to make us not feel quite so powerless.
Sorry again, but you are in the right place, I have received most of my emotional help from the people on this site. They are wonderful!

 

[zoe4life]

Christie,

So sorry that you have gotten the cf diagnosis. It is a really hard one to accept when you are looking into your 1 yr. old daughters eyes. I felt very much the way you described when Zoe was diagnosed on the eve of her 1st b-day. Go back in my blogs 'Zoe4Lfe' and you can read our story. It sounds like it is similar, which actually is not uncommon with cf. It will get better. I still cry often. We do everything in our power though to make sure she gets the best medical care. We also are involved in fundraising for the CFF, that helps to make us not feel quite so powerless.
Sorry again, but you are in the right place, I have received most of my emotional help from the people on this site. They are wonderful!

 

[froggymama]

Christie, I'm so sorry to hear of your baby's diagnosis. Our daughter who is also 16 months was diagnosed at 4 months. We spent 3 weeks in the hospital. I thought our world was over, and couldn't look at her or nurse without wanting to cry. But....now, she is a healthy, beautiful child, curious, naughty and keeping us very busy. Life is normal, hectic and beautiful. It does get easier to deal with. There will always be that sadness that creeps it's ugly head every once in a while, but life goes on. And we have the amazing gift of really understanding how precious the years are, how every moment counts. The best advice I can give is, brush away the tears, snuggle your baby, and thank god we live in a time when the cure really is possible. I know in my heart our babies will live to a ripe old age. And in the mean time, relax, everything will be okay! I'd like you to visit my blog at froggy-mama.blogspot.com, or email me at egussie1977@aol.com. Good luck to you!

 

[froggymama]

Christie, I'm so sorry to hear of your baby's diagnosis. Our daughter who is also 16 months was diagnosed at 4 months. We spent 3 weeks in the hospital. I thought our world was over, and couldn't look at her or nurse without wanting to cry. But....now, she is a healthy, beautiful child, curious, naughty and keeping us very busy. Life is normal, hectic and beautiful. It does get easier to deal with. There will always be that sadness that creeps it's ugly head every once in a while, but life goes on. And we have the amazing gift of really understanding how precious the years are, how every moment counts. The best advice I can give is, brush away the tears, snuggle your baby, and thank god we live in a time when the cure really is possible. I know in my heart our babies will live to a ripe old age. And in the mean time, relax, everything will be okay! I'd like you to visit my blog at froggy-mama.blogspot.com, or email me at egussie1977@aol.com. Good luck to you!

 

[froggymama]

Christie, I'm so sorry to hear of your baby's diagnosis. Our daughter who is also 16 months was diagnosed at 4 months. We spent 3 weeks in the hospital. I thought our world was over, and couldn't look at her or nurse without wanting to cry. But....now, she is a healthy, beautiful child, curious, naughty and keeping us very busy. Life is normal, hectic and beautiful. It does get easier to deal with. There will always be that sadness that creeps it's ugly head every once in a while, but life goes on. And we have the amazing gift of really understanding how precious the years are, how every moment counts. The best advice I can give is, brush away the tears, snuggle your baby, and thank god we live in a time when the cure really is possible. I know in my heart our babies will live to a ripe old age. And in the mean time, relax, everything will be okay! I'd like you to visit my blog at froggy-mama.blogspot.com, or email me at egussie1977@aol.com. Good luck to you!

 

[cdale613]

Hi Christie,

I saw your post, and am sorry to hear of your daughter's diagnosis. I see that only parents have responded, and thought that you might find a post from someone living with CF helpful.

I was diagnosed with CF in 1980 at age 4. When I was diagnosed, there were no CF specific drugs, and there was minimal knowledge of how the disease worked. The first CF drug became available when I was 11 years old. Prior to that, my father gave me chest physical therapy twice a day, and I was an active kid.
My parents enrolled me in many sports (soccer, swimming, basketball, etc.) I discovered running in 10th grade (after being cut from soccer), and competed on the cross-country and track teams through high school and college. My parents raised me as a "normal" kid. I played in the mud, was bundled up and pushed out the door to play in the snow, etc.

I went to college away from home, lived in a dorm with a roommate, lived in a house with 7 guys (eww), graduated, went to graduate school, graduated, got a full time job, and am engaged. I am living a full and fulfilling life both inspite of and because of CF. Having CF motivates me to set and accomplish goals, and makes me appreciate everday things that most people take for granted.

Today, my CF care takes roughly 3 hours of my day, not counting another hour I spend exercising. This is a small price for the other 21 hours.

Your challege as a CF parent is to teach your daughter to value her health, to encourage her to push her limits, to not let CF limit her potential, and to help her pick up the pieces if she pushes too far. You must learn to be her advocate in the healthcare setting, but more importantly, you must teach her how to be her own advocate.

It will be difficult, but most things worth doing are difficult. Becoming a germophobe will not help your daughter, nor will living everyday in fear of what might happen tomorrow. If your daughter is healthy today, enjoy today. If she is sick, focus on getting her healthy again. Remember to take care of yourself, physically and emotionally. The example you set with your own health and wellness will influence how your daughter grows to handle and accept her CF.

Your daughter is not living in constant pain. She doesn't know what its like not to have CF, and is too young to realize that its possible to feel any other way. Your daughter's early diagnosis gives her access to medication and treatments that will preserve her lung function and keep her as healthy as possible. Also, remember that the youngest people with CF are the ones who will benefit the most from medical advances in the treatment of CF.

If you have any questions about my personal experience with CF, feel free to PM me.

Chris

26 m/w CF

 

[cdale613]

Hi Christie,

I saw your post, and am sorry to hear of your daughter's diagnosis. I see that only parents have responded, and thought that you might find a post from someone living with CF helpful.

I was diagnosed with CF in 1980 at age 4. When I was diagnosed, there were no CF specific drugs, and there was minimal knowledge of how the disease worked. The first CF drug became available when I was 11 years old. Prior to that, my father gave me chest physical therapy twice a day, and I was an active kid.
My parents enrolled me in many sports (soccer, swimming, basketball, etc.) I discovered running in 10th grade (after being cut from soccer), and competed on the cross-country and track teams through high school and college. My parents raised me as a "normal" kid. I played in the mud, was bundled up and pushed out the door to play in the snow, etc.

I went to college away from home, lived in a dorm with a roommate, lived in a house with 7 guys (eww), graduated, went to graduate school, graduated, got a full time job, and am engaged. I am living a full and fulfilling life both inspite of and because of CF. Having CF motivates me to set and accomplish goals, and makes me appreciate everday things that most people take for granted.

Today, my CF care takes roughly 3 hours of my day, not counting another hour I spend exercising. This is a small price for the other 21 hours.

Your challege as a CF parent is to teach your daughter to value her health, to encourage her to push her limits, to not let CF limit her potential, and to help her pick up the pieces if she pushes too far. You must learn to be her advocate in the healthcare setting, but more importantly, you must teach her how to be her own advocate.

It will be difficult, but most things worth doing are difficult. Becoming a germophobe will not help your daughter, nor will living everyday in fear of what might happen tomorrow. If your daughter is healthy today, enjoy today. If she is sick, focus on getting her healthy again. Remember to take care of yourself, physically and emotionally. The example you set with your own health and wellness will influence how your daughter grows to handle and accept her CF.

Your daughter is not living in constant pain. She doesn't know what its like not to have CF, and is too young to realize that its possible to feel any other way. Your daughter's early diagnosis gives her access to medication and treatments that will preserve her lung function and keep her as healthy as possible. Also, remember that the youngest people with CF are the ones who will benefit the most from medical advances in the treatment of CF.

If you have any questions about my personal experience with CF, feel free to PM me.

Chris

26 m/w CF

 

[cdale613]

Hi Christie,

I saw your post, and am sorry to hear of your daughter's diagnosis. I see that only parents have responded, and thought that you might find a post from someone living with CF helpful.

I was diagnosed with CF in 1980 at age 4. When I was diagnosed, there were no CF specific drugs, and there was minimal knowledge of how the disease worked. The first CF drug became available when I was 11 years old. Prior to that, my father gave me chest physical therapy twice a day, and I was an active kid.
My parents enrolled me in many sports (soccer, swimming, basketball, etc.) I discovered running in 10th grade (after being cut from soccer), and competed on the cross-country and track teams through high school and college. My parents raised me as a "normal" kid. I played in the mud, was bundled up and pushed out the door to play in the snow, etc.

I went to college away from home, lived in a dorm with a roommate, lived in a house with 7 guys (eww), graduated, went to graduate school, graduated, got a full time job, and am engaged. I am living a full and fulfilling life both inspite of and because of CF. Having CF motivates me to set and accomplish goals, and makes me appreciate everday things that most people take for granted.

Today, my CF care takes roughly 3 hours of my day, not counting another hour I spend exercising. This is a small price for the other 21 hours.

Your challege as a CF parent is to teach your daughter to value her health, to encourage her to push her limits, to not let CF limit her potential, and to help her pick up the pieces if she pushes too far. You must learn to be her advocate in the healthcare setting, but more importantly, you must teach her how to be her own advocate.

It will be difficult, but most things worth doing are difficult. Becoming a germophobe will not help your daughter, nor will living everyday in fear of what might happen tomorrow. If your daughter is healthy today, enjoy today. If she is sick, focus on getting her healthy again. Remember to take care of yourself, physically and emotionally. The example you set with your own health and wellness will influence how your daughter grows to handle and accept her CF.

Your daughter is not living in constant pain. She doesn't know what its like not to have CF, and is too young to realize that its possible to feel any other way. Your daughter's early diagnosis gives her access to medication and treatments that will preserve her lung function and keep her as healthy as possible. Also, remember that the youngest people with CF are the ones who will benefit the most from medical advances in the treatment of CF.

If you have any questions about my personal experience with CF, feel free to PM me.

Chris

26 m/w CF

 

[SuperRyan]

Hi Christie


As you can see from all of the responses, you are not alone. I just recently started to participate in this site. I have spent many weeks just reading everyone's responses and then I finally decided to dive in head first. I have to say, it is the best thing that I have done. There is so much support and guidance here, I wish I had been a part of it from the beginning.

My son is 2 1/2 and he was diagnosed with CF when he was 9 months old. The first few months are definitely the toughest as you struggle to get all of the information that you can get your hands on so that you can feel somewhat capable of handling this situation. The biggest thing for me was that I just needed to know what to do for my son. Just tell me what I need to do to help him and I will do it. Once I was armed with those answers, I felt more in control of the situation. As someone else said below, KNOWLEDGE IS POWER and PROACTIVITY IS POWER. You need to be on top of what is going on and be ahead of the game.

I promise you it gets easier. You will never stop worrying, but I promise it will get to a point where it just becomes a part of everyday life. Hang in there and we will all be here going through it with you. What a conforting and reassuring thought.

Take care and God Bless..

 

[SuperRyan]

Hi Christie


As you can see from all of the responses, you are not alone. I just recently started to participate in this site. I have spent many weeks just reading everyone's responses and then I finally decided to dive in head first. I have to say, it is the best thing that I have done. There is so much support and guidance here, I wish I had been a part of it from the beginning.

My son is 2 1/2 and he was diagnosed with CF when he was 9 months old. The first few months are definitely the toughest as you struggle to get all of the information that you can get your hands on so that you can feel somewhat capable of handling this situation. The biggest thing for me was that I just needed to know what to do for my son. Just tell me what I need to do to help him and I will do it. Once I was armed with those answers, I felt more in control of the situation. As someone else said below, KNOWLEDGE IS POWER and PROACTIVITY IS POWER. You need to be on top of what is going on and be ahead of the game.

I promise you it gets easier. You will never stop worrying, but I promise it will get to a point where it just becomes a part of everyday life. Hang in there and we will all be here going through it with you. What a conforting and reassuring thought.

Take care and God Bless..