Toddler just Diagnosed

Mommy2Alysa

New member
Hi, my name is Nicole (25) and my daughter, Alysa (18 months), was diagnosed with CF yesterday and I must say I have felt every emotion possible since finding out. I dont really know what any of you can say to help me out but... what do I do now? I have her puffers and everything and I am devoted to doing whatever I can to make her life easier, without trying to treat her differently but hearing that the life span is only in the 30s makes my heart hurt.

How does one cope?
 

Mommy2Alysa

New member
Hi, my name is Nicole (25) and my daughter, Alysa (18 months), was diagnosed with CF yesterday and I must say I have felt every emotion possible since finding out. I dont really know what any of you can say to help me out but... what do I do now? I have her puffers and everything and I am devoted to doing whatever I can to make her life easier, without trying to treat her differently but hearing that the life span is only in the 30s makes my heart hurt.

How does one cope?
 

Mommy2Alysa

New member
Hi, my name is Nicole (25) and my daughter, Alysa (18 months), was diagnosed with CF yesterday and I must say I have felt every emotion possible since finding out. I dont really know what any of you can say to help me out but... what do I do now? I have her puffers and everything and I am devoted to doing whatever I can to make her life easier, without trying to treat her differently but hearing that the life span is only in the 30s makes my heart hurt.

How does one cope?
 

dbtoo

New member
As you read this forum, you will begin to note at the bottom of our messages, that most of us include our ages, and the age we were diagnosed. You will take note that some of us are in our 50's, even after being diagnosed at a young age.

Take heart young mom, Alysa will see leaps and bounds in medical and technical advancements during her lifetime that will astound everyone.
 

dbtoo

New member
As you read this forum, you will begin to note at the bottom of our messages, that most of us include our ages, and the age we were diagnosed. You will take note that some of us are in our 50's, even after being diagnosed at a young age.

Take heart young mom, Alysa will see leaps and bounds in medical and technical advancements during her lifetime that will astound everyone.
 

dbtoo

New member
As you read this forum, you will begin to note at the bottom of our messages, that most of us include our ages, and the age we were diagnosed. You will take note that some of us are in our 50's, even after being diagnosed at a young age.

Take heart young mom, Alysa will see leaps and bounds in medical and technical advancements during her lifetime that will astound everyone.
 

Rebjane

Super Moderator
Nicole,

Welcome, I'm sorry to hear your daughter was diagnosed with CF but you have found a wonderful place to find support, information, and a place where people just get what you are talking about.

First off, now that you have a CF diagnosis your daughter's health may actually improve because you will see a CF doctor who has understanding of what your child needs to keep her well, for example chest physical therapy, nebs, enzymes etc.

My daughter is almost 4 with CF and she is just like any other child. She is outgoing, silly and smart. In fact, she has compassion for others, when she's at nursery school , her teachers tell me she's very caring when someone gets hurt.

I try hard not to dwell on what could of been or what may be, we can only deal with the cards we are delt(sp)? We just try to make the best of our situation.

The diagnosis is new to you and you are entitled to all the range of feelings you have. I for one had anger as a strong feeling for a long time. I was angry at people who had healthy babies and angry at people for worrying about petty things. I was even angry at my husband because he doesn't worry as much as I do and now I had so much to worry about. Over time, i guess I let it go, I take time to myself, go running which helps me burn off all the anger and frustration.

I think I enjoy life more now, each day is a gift nothing can be taken for granted and I learned that from my daughter with CF. Some people never learn this in their lifetime.

Continue to ask questions about CF, knowledge is power.
 

Rebjane

Super Moderator
Nicole,

Welcome, I'm sorry to hear your daughter was diagnosed with CF but you have found a wonderful place to find support, information, and a place where people just get what you are talking about.

First off, now that you have a CF diagnosis your daughter's health may actually improve because you will see a CF doctor who has understanding of what your child needs to keep her well, for example chest physical therapy, nebs, enzymes etc.

My daughter is almost 4 with CF and she is just like any other child. She is outgoing, silly and smart. In fact, she has compassion for others, when she's at nursery school , her teachers tell me she's very caring when someone gets hurt.

I try hard not to dwell on what could of been or what may be, we can only deal with the cards we are delt(sp)? We just try to make the best of our situation.

The diagnosis is new to you and you are entitled to all the range of feelings you have. I for one had anger as a strong feeling for a long time. I was angry at people who had healthy babies and angry at people for worrying about petty things. I was even angry at my husband because he doesn't worry as much as I do and now I had so much to worry about. Over time, i guess I let it go, I take time to myself, go running which helps me burn off all the anger and frustration.

I think I enjoy life more now, each day is a gift nothing can be taken for granted and I learned that from my daughter with CF. Some people never learn this in their lifetime.

Continue to ask questions about CF, knowledge is power.
 

Rebjane

Super Moderator
Nicole,

Welcome, I'm sorry to hear your daughter was diagnosed with CF but you have found a wonderful place to find support, information, and a place where people just get what you are talking about.

First off, now that you have a CF diagnosis your daughter's health may actually improve because you will see a CF doctor who has understanding of what your child needs to keep her well, for example chest physical therapy, nebs, enzymes etc.

My daughter is almost 4 with CF and she is just like any other child. She is outgoing, silly and smart. In fact, she has compassion for others, when she's at nursery school , her teachers tell me she's very caring when someone gets hurt.

I try hard not to dwell on what could of been or what may be, we can only deal with the cards we are delt(sp)? We just try to make the best of our situation.

The diagnosis is new to you and you are entitled to all the range of feelings you have. I for one had anger as a strong feeling for a long time. I was angry at people who had healthy babies and angry at people for worrying about petty things. I was even angry at my husband because he doesn't worry as much as I do and now I had so much to worry about. Over time, i guess I let it go, I take time to myself, go running which helps me burn off all the anger and frustration.

I think I enjoy life more now, each day is a gift nothing can be taken for granted and I learned that from my daughter with CF. Some people never learn this in their lifetime.

Continue to ask questions about CF, knowledge is power.
 

johnsmum

New member
<img src="i/expressions/brokenheart.gif" border="0">hi nicole, my name is alana my son is ten months old. I found out he had cf when he was two weeks old. It has been hard but all i can say is right now you will be scared and very confused. but the best thing to do is honestly take each day as it comes, because right now thats all you can do. You will think know one understands and they don't unless they are in your position. Just take comfort in the fact that at leats now u know whats been wrong with your daughter and she can get the best treatment possible. I beleive physio is the most important part of their treatment. take care alana
 

johnsmum

New member
<img src="i/expressions/brokenheart.gif" border="0">hi nicole, my name is alana my son is ten months old. I found out he had cf when he was two weeks old. It has been hard but all i can say is right now you will be scared and very confused. but the best thing to do is honestly take each day as it comes, because right now thats all you can do. You will think know one understands and they don't unless they are in your position. Just take comfort in the fact that at leats now u know whats been wrong with your daughter and she can get the best treatment possible. I beleive physio is the most important part of their treatment. take care alana
 

johnsmum

New member
<img src="i/expressions/brokenheart.gif" border="0">hi nicole, my name is alana my son is ten months old. I found out he had cf when he was two weeks old. It has been hard but all i can say is right now you will be scared and very confused. but the best thing to do is honestly take each day as it comes, because right now thats all you can do. You will think know one understands and they don't unless they are in your position. Just take comfort in the fact that at leats now u know whats been wrong with your daughter and she can get the best treatment possible. I beleive physio is the most important part of their treatment. take care alana
 
S

Shoshanna

Guest
Nicole,

Don't lose hope. There may be a cure within your daughter's lifetime. And even if there isn't, there are new drugs around the corner everyday. We're all living longer, often with a better quality of life.

I was diagnosed at birth and was symptom free until age 13. I went to college, studied abroad in Israel and went to grad school. I am now married with a 1 year-old son.

I'm not going to sugarcoat things...this disease truly stinks, but there is so much hope for the future. Your dght will have an illness, but she'll also have a depth of character that most never will. She will truly appreciate life and smell all the roses.

There are enough of us out there to attest to that!

Shoshanna
33 yr-old
 
S

Shoshanna

Guest
Nicole,

Don't lose hope. There may be a cure within your daughter's lifetime. And even if there isn't, there are new drugs around the corner everyday. We're all living longer, often with a better quality of life.

I was diagnosed at birth and was symptom free until age 13. I went to college, studied abroad in Israel and went to grad school. I am now married with a 1 year-old son.

I'm not going to sugarcoat things...this disease truly stinks, but there is so much hope for the future. Your dght will have an illness, but she'll also have a depth of character that most never will. She will truly appreciate life and smell all the roses.

There are enough of us out there to attest to that!

Shoshanna
33 yr-old
 
S

Shoshanna

Guest
Nicole,

Don't lose hope. There may be a cure within your daughter's lifetime. And even if there isn't, there are new drugs around the corner everyday. We're all living longer, often with a better quality of life.

I was diagnosed at birth and was symptom free until age 13. I went to college, studied abroad in Israel and went to grad school. I am now married with a 1 year-old son.

I'm not going to sugarcoat things...this disease truly stinks, but there is so much hope for the future. Your dght will have an illness, but she'll also have a depth of character that most never will. She will truly appreciate life and smell all the roses.

There are enough of us out there to attest to that!

Shoshanna
33 yr-old
 

Mommy2Alysa

New member
Thank you so much all of you for your words of encouragement. You are totally right as scary as this is, its nice to know that I wasnt just paranoid about her having something seriously wrong her. I mean I was constantly (or it felt that way) at the hospital concerned about the fact that she coughed so much she puked like 3-4 times a day (she is 18 months old and 20 lbs) and to me THAT is not normal but kept getting turned away.

I know her life will be hard but with the advancements medical research is making I know she will have a happy healthy life for however short or long that may be. It's nice to hear that some of you are older than the average age I was given and that your children are "normal" kids who enjoy the same things everyone else's do.

The one thing we are concerned about is making sure she doesnt get sick.... how do I prevent that? Stay home with her and place her in a bubble forever? (which I wouldnt do) or is she okay to continue going to daycare and everything?

Thank you all once again.
 

Mommy2Alysa

New member
Thank you so much all of you for your words of encouragement. You are totally right as scary as this is, its nice to know that I wasnt just paranoid about her having something seriously wrong her. I mean I was constantly (or it felt that way) at the hospital concerned about the fact that she coughed so much she puked like 3-4 times a day (she is 18 months old and 20 lbs) and to me THAT is not normal but kept getting turned away.

I know her life will be hard but with the advancements medical research is making I know she will have a happy healthy life for however short or long that may be. It's nice to hear that some of you are older than the average age I was given and that your children are "normal" kids who enjoy the same things everyone else's do.

The one thing we are concerned about is making sure she doesnt get sick.... how do I prevent that? Stay home with her and place her in a bubble forever? (which I wouldnt do) or is she okay to continue going to daycare and everything?

Thank you all once again.
 

Mommy2Alysa

New member
Thank you so much all of you for your words of encouragement. You are totally right as scary as this is, its nice to know that I wasnt just paranoid about her having something seriously wrong her. I mean I was constantly (or it felt that way) at the hospital concerned about the fact that she coughed so much she puked like 3-4 times a day (she is 18 months old and 20 lbs) and to me THAT is not normal but kept getting turned away.

I know her life will be hard but with the advancements medical research is making I know she will have a happy healthy life for however short or long that may be. It's nice to hear that some of you are older than the average age I was given and that your children are "normal" kids who enjoy the same things everyone else's do.

The one thing we are concerned about is making sure she doesnt get sick.... how do I prevent that? Stay home with her and place her in a bubble forever? (which I wouldnt do) or is she okay to continue going to daycare and everything?

Thank you all once again.
 
M

mneville

Guest
Hi Nicole. Our firstborn son was diagnosed at 8 days old thanks to NJ newborn screening. It was so hard in the beginning. But it gets easier, the routine, the meds.... He is now two and is just amazing! He is the greatest little thing, full of energy, 90% for weight, doing so well. So stay optimistic.

Daycare was a hard decision for us. We had to work but were not comfortable putting him in daycare so young. My mom quit her job to care for him. He now does play groups and such but I still am cautious esp during this season. Our doctors never warned us against daycare, it was just something I was at all happy about. We now have Baby #2 on the way so are looking at our options again. Good luck and have faith.

Megan
 
M

mneville

Guest
Hi Nicole. Our firstborn son was diagnosed at 8 days old thanks to NJ newborn screening. It was so hard in the beginning. But it gets easier, the routine, the meds.... He is now two and is just amazing! He is the greatest little thing, full of energy, 90% for weight, doing so well. So stay optimistic.

Daycare was a hard decision for us. We had to work but were not comfortable putting him in daycare so young. My mom quit her job to care for him. He now does play groups and such but I still am cautious esp during this season. Our doctors never warned us against daycare, it was just something I was at all happy about. We now have Baby #2 on the way so are looking at our options again. Good luck and have faith.

Megan
 
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