soooo SCARED DEATH not sure where to go from here

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CDBRADEN2004

New member
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
 
C

CDBRADEN2004

New member
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
 
C

CDBRADEN2004

New member
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
 
R

Ratatosk

Administrator
Staff member
Our son was diagnosed shortly after he was born. Was a big shock, to say the least. No family history. Normal pregnancy. Experienced disbelief, anger, fear, sadness... I was overwhelmed with all the new things we had to learn -- medications, chest physiotherapy, nebulizers, enzymes....

Got into a routine, figured out a schedule that worked for us. Tried not to worry so much. Tried to enjoy our child. To begin with I was so worried about whether or not he was eating enough, worried about what ifs -- what if he got another bowel obstruction, the future, that I was exhausted and I wasn't taking the time to enjoy normal baby/childhood milestones.

I still get worried if DS gets a cold or is under the weather. But it doesn't come in horrific waves of terror anymore. And we've got the routine down, although I get bummed if the doctor adds another medication. Took me half a year to quit being so resentful about pulmozyme. Yes, it's a good drug. Will help keep his lungs healthy and happy, but it was just one more thing.

At least now you know what's wrong with your child and you can focus on keeping her happy and healthy. Today DS is going to preschool -- this morning he was trying to entertain a new child by singing "In heaven there is no beer". Poor kid was homesick and sad about starting school. DS is in gymnastics and swimming lessons. He loves playing outdoors -- especially in the winter, much to my dismay. Brrrr!
 
R

Ratatosk

Administrator
Staff member
Our son was diagnosed shortly after he was born. Was a big shock, to say the least. No family history. Normal pregnancy. Experienced disbelief, anger, fear, sadness... I was overwhelmed with all the new things we had to learn -- medications, chest physiotherapy, nebulizers, enzymes....

Got into a routine, figured out a schedule that worked for us. Tried not to worry so much. Tried to enjoy our child. To begin with I was so worried about whether or not he was eating enough, worried about what ifs -- what if he got another bowel obstruction, the future, that I was exhausted and I wasn't taking the time to enjoy normal baby/childhood milestones.

I still get worried if DS gets a cold or is under the weather. But it doesn't come in horrific waves of terror anymore. And we've got the routine down, although I get bummed if the doctor adds another medication. Took me half a year to quit being so resentful about pulmozyme. Yes, it's a good drug. Will help keep his lungs healthy and happy, but it was just one more thing.

At least now you know what's wrong with your child and you can focus on keeping her happy and healthy. Today DS is going to preschool -- this morning he was trying to entertain a new child by singing "In heaven there is no beer". Poor kid was homesick and sad about starting school. DS is in gymnastics and swimming lessons. He loves playing outdoors -- especially in the winter, much to my dismay. Brrrr!
 
R

Ratatosk

Administrator
Staff member
Our son was diagnosed shortly after he was born. Was a big shock, to say the least. No family history. Normal pregnancy. Experienced disbelief, anger, fear, sadness... I was overwhelmed with all the new things we had to learn -- medications, chest physiotherapy, nebulizers, enzymes....

Got into a routine, figured out a schedule that worked for us. Tried not to worry so much. Tried to enjoy our child. To begin with I was so worried about whether or not he was eating enough, worried about what ifs -- what if he got another bowel obstruction, the future, that I was exhausted and I wasn't taking the time to enjoy normal baby/childhood milestones.

I still get worried if DS gets a cold or is under the weather. But it doesn't come in horrific waves of terror anymore. And we've got the routine down, although I get bummed if the doctor adds another medication. Took me half a year to quit being so resentful about pulmozyme. Yes, it's a good drug. Will help keep his lungs healthy and happy, but it was just one more thing.

At least now you know what's wrong with your child and you can focus on keeping her happy and healthy. Today DS is going to preschool -- this morning he was trying to entertain a new child by singing "In heaven there is no beer". Poor kid was homesick and sad about starting school. DS is in gymnastics and swimming lessons. He loves playing outdoors -- especially in the winter, much to my dismay. Brrrr!
 
E

Emily65Roses

New member
Just wondering if you got my private message? You sent me one, I responded. I'm just checking to make sure you got it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
E

Emily65Roses

New member
Just wondering if you got my private message? You sent me one, I responded. I'm just checking to make sure you got it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
E

Emily65Roses

New member
Just wondering if you got my private message? You sent me one, I responded. I'm just checking to make sure you got it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

angelas

New member
Sharing story here for you also. Crystal was diagnosed at 6 weeks so we started everything right away. I was 18 so I know I you feel. I was in shock and did not know what to do or where to turn. The doctor is right there are so many advancements now. 6 years later my neice was born with CF also. Crystal did very well. We had our first hospital stay at age 7, then again at 11, then again at 15, and 16. She graduated high school with honors, bought a house on her own at 20, got married and had a great life. She lived to be 23 years and 6 months. And with all of the therapies, hospital, doctor visits, medications, worrying about bills and how to make it through each day I can honestly say I would not trade a single day of life with her. These children are put on this earth for a reason and I believe only given to parents who can take special care of them! Hang in there, take it one day at a time, get the routine down and live life to the fullest!
 
A

angelas

New member
Sharing story here for you also. Crystal was diagnosed at 6 weeks so we started everything right away. I was 18 so I know I you feel. I was in shock and did not know what to do or where to turn. The doctor is right there are so many advancements now. 6 years later my neice was born with CF also. Crystal did very well. We had our first hospital stay at age 7, then again at 11, then again at 15, and 16. She graduated high school with honors, bought a house on her own at 20, got married and had a great life. She lived to be 23 years and 6 months. And with all of the therapies, hospital, doctor visits, medications, worrying about bills and how to make it through each day I can honestly say I would not trade a single day of life with her. These children are put on this earth for a reason and I believe only given to parents who can take special care of them! Hang in there, take it one day at a time, get the routine down and live life to the fullest!
 
A

angelas

New member
Sharing story here for you also. Crystal was diagnosed at 6 weeks so we started everything right away. I was 18 so I know I you feel. I was in shock and did not know what to do or where to turn. The doctor is right there are so many advancements now. 6 years later my neice was born with CF also. Crystal did very well. We had our first hospital stay at age 7, then again at 11, then again at 15, and 16. She graduated high school with honors, bought a house on her own at 20, got married and had a great life. She lived to be 23 years and 6 months. And with all of the therapies, hospital, doctor visits, medications, worrying about bills and how to make it through each day I can honestly say I would not trade a single day of life with her. These children are put on this earth for a reason and I believe only given to parents who can take special care of them! Hang in there, take it one day at a time, get the routine down and live life to the fullest!
 
L

lemonstolemonade

Guest
Christie,

It is a lot to process. We are all here for you. That is the wonderful thing about this forum...it is full of wonderful people who genuinely care about each other.

When you have questions, or need to rant, or need to just hear that what you are feeling is normal, just type. Someone is usually around and will help you.

Sometimes it feels like too much to digest. Don't try to read everything at once and becareful where you look online for CF information. So much of it is outdated. There are plenty on here who can point you in the right direction for reliable sources...

this site, cff.org, etc.

I will be thinking of you and your family often!

Emily
 
L

lemonstolemonade

Guest
Christie,

It is a lot to process. We are all here for you. That is the wonderful thing about this forum...it is full of wonderful people who genuinely care about each other.

When you have questions, or need to rant, or need to just hear that what you are feeling is normal, just type. Someone is usually around and will help you.

Sometimes it feels like too much to digest. Don't try to read everything at once and becareful where you look online for CF information. So much of it is outdated. There are plenty on here who can point you in the right direction for reliable sources...

this site, cff.org, etc.

I will be thinking of you and your family often!

Emily
 
L

lemonstolemonade

Guest
Christie,

It is a lot to process. We are all here for you. That is the wonderful thing about this forum...it is full of wonderful people who genuinely care about each other.

When you have questions, or need to rant, or need to just hear that what you are feeling is normal, just type. Someone is usually around and will help you.

Sometimes it feels like too much to digest. Don't try to read everything at once and becareful where you look online for CF information. So much of it is outdated. There are plenty on here who can point you in the right direction for reliable sources...

this site, cff.org, etc.

I will be thinking of you and your family often!

Emily
 
J

JazzysMom

New member
First of all, BREATH. Now....take one day at a time. It is hard to grasp it all & even tho you want the best answers, the truth is there is no way to know anything for sure when it comes to CF. I tried explaining this to my daughter last year when I kept doing everything I was suppose to, but still had to go into the hospital. In addition to doing the treatments, taking the meds, having the best environment and be alert.....you need luck. THis site has quite a few "old timers" on it so that gives hope. BUT also realize that everyone is different. IMHO you are better off keeping an optimistic view with a touch of reality so when you are faced with hard times, you dont get slammed to the ground.
 
J

JazzysMom

New member
First of all, BREATH. Now....take one day at a time. It is hard to grasp it all & even tho you want the best answers, the truth is there is no way to know anything for sure when it comes to CF. I tried explaining this to my daughter last year when I kept doing everything I was suppose to, but still had to go into the hospital. In addition to doing the treatments, taking the meds, having the best environment and be alert.....you need luck. THis site has quite a few "old timers" on it so that gives hope. BUT also realize that everyone is different. IMHO you are better off keeping an optimistic view with a touch of reality so when you are faced with hard times, you dont get slammed to the ground.
 
J

JazzysMom

New member
First of all, BREATH. Now....take one day at a time. It is hard to grasp it all & even tho you want the best answers, the truth is there is no way to know anything for sure when it comes to CF. I tried explaining this to my daughter last year when I kept doing everything I was suppose to, but still had to go into the hospital. In addition to doing the treatments, taking the meds, having the best environment and be alert.....you need luck. THis site has quite a few "old timers" on it so that gives hope. BUT also realize that everyone is different. IMHO you are better off keeping an optimistic view with a touch of reality so when you are faced with hard times, you dont get slammed to the ground.
 
C

CDBRADEN2004

New member
Good Morning Emily:

I did recieve your message and I can't thank you enough for sharing your story with me. I am soooooooo grateful that I have found this site and after a couple of days of being a part of this community I have found that it is not so bad. It is very warming to talk to individuals that understand what I am feeling, and going through. Everyone has been very receptive and have made me feel alot better about looking into the future. Once again thank you very much and hopefully I will talk to you again soon.

Christie
 
C

CDBRADEN2004

New member
Good Morning Emily:

I did recieve your message and I can't thank you enough for sharing your story with me. I am soooooooo grateful that I have found this site and after a couple of days of being a part of this community I have found that it is not so bad. It is very warming to talk to individuals that understand what I am feeling, and going through. Everyone has been very receptive and have made me feel alot better about looking into the future. Once again thank you very much and hopefully I will talk to you again soon.

Christie
 
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