need alittle help

[Mommy2Alysa]

Hi!

So sorry to hear about your little one. When Alysa was diagnosed at 18 months I was devasted but also a little bit relieved because be she was diagnosed she was puking 3 or 4 times a day and I just couldnt figure out what was wrong..

So now we have a name and a treatment and I actually have two little girls with CF (I concieved Kiana the month after Alysa was diagnosed so it was still new the ball was already rolling on that end).

As far as telling other people about it, I wouldnt stress too much. As you know CF is not contagious and people will not be able to pick your daughter out in a crowd. The only time people may think that there is something different is when she has to take her pills and even then people dont really ask questions (I think they assume it is just vitamins or something).

Best piece of advice I can give you is to be a stickler for her treatments. This new to both of you so it may take some time before you get into a routine - you will get there and now giving enzymes before Alysa eats a meal or before Kiana has a bottle is just second nature to me.

Ask any questions you have and feel free to pm me if you need a friend.

 

[Mommy2Alysa]

Hi!

So sorry to hear about your little one. When Alysa was diagnosed at 18 months I was devasted but also a little bit relieved because be she was diagnosed she was puking 3 or 4 times a day and I just couldnt figure out what was wrong..

So now we have a name and a treatment and I actually have two little girls with CF (I concieved Kiana the month after Alysa was diagnosed so it was still new the ball was already rolling on that end).

As far as telling other people about it, I wouldnt stress too much. As you know CF is not contagious and people will not be able to pick your daughter out in a crowd. The only time people may think that there is something different is when she has to take her pills and even then people dont really ask questions (I think they assume it is just vitamins or something).

Best piece of advice I can give you is to be a stickler for her treatments. This new to both of you so it may take some time before you get into a routine - you will get there and now giving enzymes before Alysa eats a meal or before Kiana has a bottle is just second nature to me.

Ask any questions you have and feel free to pm me if you need a friend.

 

[Mommy2Alysa]

Hi!

So sorry to hear about your little one. When Alysa was diagnosed at 18 months I was devasted but also a little bit relieved because be she was diagnosed she was puking 3 or 4 times a day and I just couldnt figure out what was wrong..

So now we have a name and a treatment and I actually have two little girls with CF (I concieved Kiana the month after Alysa was diagnosed so it was still new the ball was already rolling on that end).

As far as telling other people about it, I wouldnt stress too much. As you know CF is not contagious and people will not be able to pick your daughter out in a crowd. The only time people may think that there is something different is when she has to take her pills and even then people dont really ask questions (I think they assume it is just vitamins or something).

Best piece of advice I can give you is to be a stickler for her treatments. This new to both of you so it may take some time before you get into a routine - you will get there and now giving enzymes before Alysa eats a meal or before Kiana has a bottle is just second nature to me.

Ask any questions you have and feel free to pm me if you need a friend.

 

[Mommy2Alysa]

Hi!

So sorry to hear about your little one. When Alysa was diagnosed at 18 months I was devasted but also a little bit relieved because be she was diagnosed she was puking 3 or 4 times a day and I just couldnt figure out what was wrong..

So now we have a name and a treatment and I actually have two little girls with CF (I concieved Kiana the month after Alysa was diagnosed so it was still new the ball was already rolling on that end).

As far as telling other people about it, I wouldnt stress too much. As you know CF is not contagious and people will not be able to pick your daughter out in a crowd. The only time people may think that there is something different is when she has to take her pills and even then people dont really ask questions (I think they assume it is just vitamins or something).

Best piece of advice I can give you is to be a stickler for her treatments. This new to both of you so it may take some time before you get into a routine - you will get there and now giving enzymes before Alysa eats a meal or before Kiana has a bottle is just second nature to me.

Ask any questions you have and feel free to pm me if you need a friend.

 

[Mommy2Alysa]

Hi!
<br />
<br />So sorry to hear about your little one. When Alysa was diagnosed at 18 months I was devasted but also a little bit relieved because be she was diagnosed she was puking 3 or 4 times a day and I just couldnt figure out what was wrong..
<br />
<br />So now we have a name and a treatment and I actually have two little girls with CF (I concieved Kiana the month after Alysa was diagnosed so it was still new the ball was already rolling on that end).
<br />
<br />As far as telling other people about it, I wouldnt stress too much. As you know CF is not contagious and people will not be able to pick your daughter out in a crowd. The only time people may think that there is something different is when she has to take her pills and even then people dont really ask questions (I think they assume it is just vitamins or something).
<br />
<br />Best piece of advice I can give you is to be a stickler for her treatments. This new to both of you so it may take some time before you get into a routine - you will get there and now giving enzymes before Alysa eats a meal or before Kiana has a bottle is just second nature to me.
<br />
<br />Ask any questions you have and feel free to pm me if you need a friend.

 

[shathasy]

hi , i'm from syria my brother is suffering of cf .
he is 19th years old now .i know it is very deficult but u must be powerful sarah because your doughter needs your support to continue her life

 

[shathasy]

hi , i'm from syria my brother is suffering of cf .
he is 19th years old now .i know it is very deficult but u must be powerful sarah because your doughter needs your support to continue her life

 

[shathasy]

hi , i'm from syria my brother is suffering of cf .
he is 19th years old now .i know it is very deficult but u must be powerful sarah because your doughter needs your support to continue her life

 

[shathasy]

hi , i'm from syria my brother is suffering of cf .
he is 19th years old now .i know it is very deficult but u must be powerful sarah because your doughter needs your support to continue her life

 

[shathasy]

hi , i'm from syria my brother is suffering of cf .
<br />he is 19th years old now .i know it is very deficult but u must be powerful sarah because your doughter needs your support to continue her life

 

[jendonl]

When our dd was first diagnosed, it felt like my entire feelings for her had changed. I was so sad every time I looked at her. I thought I would never be able to just look at her as my little daughter again without thinking about her CF.

But as time went on I found nothing had really changed. Just a few added routines, extra work, extra doctor's appointments. Now when I look at her I just see my little daughter who happens to have CF. Right now you are probably feeling all of the sadness of the new diagnosis but take heart that things will get better. It will just become another part of your life.

 

[jendonl]

When our dd was first diagnosed, it felt like my entire feelings for her had changed. I was so sad every time I looked at her. I thought I would never be able to just look at her as my little daughter again without thinking about her CF.

But as time went on I found nothing had really changed. Just a few added routines, extra work, extra doctor's appointments. Now when I look at her I just see my little daughter who happens to have CF. Right now you are probably feeling all of the sadness of the new diagnosis but take heart that things will get better. It will just become another part of your life.

 

[jendonl]

When our dd was first diagnosed, it felt like my entire feelings for her had changed. I was so sad every time I looked at her. I thought I would never be able to just look at her as my little daughter again without thinking about her CF.

But as time went on I found nothing had really changed. Just a few added routines, extra work, extra doctor's appointments. Now when I look at her I just see my little daughter who happens to have CF. Right now you are probably feeling all of the sadness of the new diagnosis but take heart that things will get better. It will just become another part of your life.

 

[jendonl]

When our dd was first diagnosed, it felt like my entire feelings for her had changed. I was so sad every time I looked at her. I thought I would never be able to just look at her as my little daughter again without thinking about her CF.

But as time went on I found nothing had really changed. Just a few added routines, extra work, extra doctor's appointments. Now when I look at her I just see my little daughter who happens to have CF. Right now you are probably feeling all of the sadness of the new diagnosis but take heart that things will get better. It will just become another part of your life.

 

[jendonl]

When our dd was first diagnosed, it felt like my entire feelings for her had changed. I was so sad every time I looked at her. I thought I would never be able to just look at her as my little daughter again without thinking about her CF.
<br />
<br />But as time went on I found nothing had really changed. Just a few added routines, extra work, extra doctor's appointments. Now when I look at her I just see my little daughter who happens to have CF. Right now you are probably feeling all of the sadness of the new diagnosis but take heart that things will get better. It will just become another part of your life.

 

[Louieh1]

My heart goes out to you reading that as we all know whats its like to be there.Your little girl has CF,always did and always will but you would not change her for the world so you have to be positive and become accustomed to who she is.4 years on from my sons diagnosis I realise he would not be the person I love and adore as it has made him the person he is.Accept that and you will also accept Cf!!!Its hard,will take some time but treatments are much better these days and you will soon become accustomed to physio and meds and not give it a second thought!Good luck and I wish you well!!!!
Dont ask for a lighter load....ask for a stronger back!!!!!

 

[Louieh1]

My heart goes out to you reading that as we all know whats its like to be there.Your little girl has CF,always did and always will but you would not change her for the world so you have to be positive and become accustomed to who she is.4 years on from my sons diagnosis I realise he would not be the person I love and adore as it has made him the person he is.Accept that and you will also accept Cf!!!Its hard,will take some time but treatments are much better these days and you will soon become accustomed to physio and meds and not give it a second thought!Good luck and I wish you well!!!!
Dont ask for a lighter load....ask for a stronger back!!!!!

 

[Louieh1]

My heart goes out to you reading that as we all know whats its like to be there.Your little girl has CF,always did and always will but you would not change her for the world so you have to be positive and become accustomed to who she is.4 years on from my sons diagnosis I realise he would not be the person I love and adore as it has made him the person he is.Accept that and you will also accept Cf!!!Its hard,will take some time but treatments are much better these days and you will soon become accustomed to physio and meds and not give it a second thought!Good luck and I wish you well!!!!
Dont ask for a lighter load....ask for a stronger back!!!!!

 

[Louieh1]

My heart goes out to you reading that as we all know whats its like to be there.Your little girl has CF,always did and always will but you would not change her for the world so you have to be positive and become accustomed to who she is.4 years on from my sons diagnosis I realise he would not be the person I love and adore as it has made him the person he is.Accept that and you will also accept Cf!!!Its hard,will take some time but treatments are much better these days and you will soon become accustomed to physio and meds and not give it a second thought!Good luck and I wish you well!!!!
Dont ask for a lighter load....ask for a stronger back!!!!!

 

[Louieh1]

My heart goes out to you reading that as we all know whats its like to be there.Your little girl has CF,always did and always will but you would not change her for the world so you have to be positive and become accustomed to who she is.4 years on from my sons diagnosis I realise he would not be the person I love and adore as it has made him the person he is.Accept that and you will also accept Cf!!!Its hard,will take some time but treatments are much better these days and you will soon become accustomed to physio and meds and not give it a second thought!Good luck and I wish you well!!!!
<br />Dont ask for a lighter load....ask for a stronger back!!!!!
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