Out of control....

J

Jem

New member
Yes, get to an accredited CF center and begin the treatments. Learn as much as you can about cf and ask any questions you might have to us and to your son's doctors. Then go live life.

So many advances have taken place since I was born. You have real hope that your baby is going to grow up and enjoy many of the things that life has to offer. Keeping your family in prayer.
 
J

Jem

New member
Yes, get to an accredited CF center and begin the treatments. Learn as much as you can about cf and ask any questions you might have to us and to your son's doctors. Then go live life.

So many advances have taken place since I was born. You have real hope that your baby is going to grow up and enjoy many of the things that life has to offer. Keeping your family in prayer.
 
R

Rebjane

Super Moderator
Leighann,

I'm sorry for your daughter's diagnosis. Like the other posters stated; getting your daughter to an accredidated CF center with a good Children's CF pulmonologist will help. A good resource is the Cystic Fibrosis Foundation. Their website is www.cff.org. The information is reliable on that site. Not all doctors are current on CF info so always keep that in mind. However, the website www.cff.org has the CF clinics listed in your area. It is hard because I know you want to make everything better for your daughter, but becoming knowledgeable about CF is how you can do that for her.


No Cf is not an easy thing but you will find a "new normal". My daughter 4 1/2 with CF amazes everyday. She is smart, creative, funny, and yes a pesty little sister according to my son. She does normal kid stuff, ballet/tap, playgroup, nursery school, etc. When she gets sick, the stress level in our household goes up significantly. But we continue to get back to our normal as soon as possible for everyone's benefit in our family.


Always ask questions and we're here for you. This site is great for info and support.
 
R

Rebjane

Super Moderator
Leighann,

I'm sorry for your daughter's diagnosis. Like the other posters stated; getting your daughter to an accredidated CF center with a good Children's CF pulmonologist will help. A good resource is the Cystic Fibrosis Foundation. Their website is www.cff.org. The information is reliable on that site. Not all doctors are current on CF info so always keep that in mind. However, the website www.cff.org has the CF clinics listed in your area. It is hard because I know you want to make everything better for your daughter, but becoming knowledgeable about CF is how you can do that for her.


No Cf is not an easy thing but you will find a "new normal". My daughter 4 1/2 with CF amazes everyday. She is smart, creative, funny, and yes a pesty little sister according to my son. She does normal kid stuff, ballet/tap, playgroup, nursery school, etc. When she gets sick, the stress level in our household goes up significantly. But we continue to get back to our normal as soon as possible for everyone's benefit in our family.


Always ask questions and we're here for you. This site is great for info and support.
 
R

Rebjane

Super Moderator
Leighann,

I'm sorry for your daughter's diagnosis. Like the other posters stated; getting your daughter to an accredidated CF center with a good Children's CF pulmonologist will help. A good resource is the Cystic Fibrosis Foundation. Their website is www.cff.org. The information is reliable on that site. Not all doctors are current on CF info so always keep that in mind. However, the website www.cff.org has the CF clinics listed in your area. It is hard because I know you want to make everything better for your daughter, but becoming knowledgeable about CF is how you can do that for her.


No Cf is not an easy thing but you will find a "new normal". My daughter 4 1/2 with CF amazes everyday. She is smart, creative, funny, and yes a pesty little sister according to my son. She does normal kid stuff, ballet/tap, playgroup, nursery school, etc. When she gets sick, the stress level in our household goes up significantly. But we continue to get back to our normal as soon as possible for everyone's benefit in our family.


Always ask questions and we're here for you. This site is great for info and support.
 
R

Rebjane

Super Moderator
Leighann,

I'm sorry for your daughter's diagnosis. Like the other posters stated; getting your daughter to an accredidated CF center with a good Children's CF pulmonologist will help. A good resource is the Cystic Fibrosis Foundation. Their website is www.cff.org. The information is reliable on that site. Not all doctors are current on CF info so always keep that in mind. However, the website www.cff.org has the CF clinics listed in your area. It is hard because I know you want to make everything better for your daughter, but becoming knowledgeable about CF is how you can do that for her.


No Cf is not an easy thing but you will find a "new normal". My daughter 4 1/2 with CF amazes everyday. She is smart, creative, funny, and yes a pesty little sister according to my son. She does normal kid stuff, ballet/tap, playgroup, nursery school, etc. When she gets sick, the stress level in our household goes up significantly. But we continue to get back to our normal as soon as possible for everyone's benefit in our family.


Always ask questions and we're here for you. This site is great for info and support.
 
R

Rebjane

Super Moderator
Leighann,

I'm sorry for your daughter's diagnosis. Like the other posters stated; getting your daughter to an accredidated CF center with a good Children's CF pulmonologist will help. A good resource is the Cystic Fibrosis Foundation. Their website is www.cff.org. The information is reliable on that site. Not all doctors are current on CF info so always keep that in mind. However, the website www.cff.org has the CF clinics listed in your area. It is hard because I know you want to make everything better for your daughter, but becoming knowledgeable about CF is how you can do that for her.


No Cf is not an easy thing but you will find a "new normal". My daughter 4 1/2 with CF amazes everyday. She is smart, creative, funny, and yes a pesty little sister according to my son. She does normal kid stuff, ballet/tap, playgroup, nursery school, etc. When she gets sick, the stress level in our household goes up significantly. But we continue to get back to our normal as soon as possible for everyone's benefit in our family.


Always ask questions and we're here for you. This site is great for info and support.
 
R

Rebjane

Super Moderator
Leighann,

I'm sorry for your daughter's diagnosis. Like the other posters stated; getting your daughter to an accredidated CF center with a good Children's CF pulmonologist will help. A good resource is the Cystic Fibrosis Foundation. Their website is www.cff.org. The information is reliable on that site. Not all doctors are current on CF info so always keep that in mind. However, the website www.cff.org has the CF clinics listed in your area. It is hard because I know you want to make everything better for your daughter, but becoming knowledgeable about CF is how you can do that for her.


No Cf is not an easy thing but you will find a "new normal". My daughter 4 1/2 with CF amazes everyday. She is smart, creative, funny, and yes a pesty little sister according to my son. She does normal kid stuff, ballet/tap, playgroup, nursery school, etc. When she gets sick, the stress level in our household goes up significantly. But we continue to get back to our normal as soon as possible for everyone's benefit in our family.


Always ask questions and we're here for you. This site is great for info and support.
 
R

Ratatosk

Administrator
Staff member
Exactly 4 years ago this week we got DS's diagnosis. Shock, rage, disbelief -- crying jags for hours. Fortunately a CF doctor was sent over to visit with us a few hours after the genetic blood tests came back -- he went over cf, treatments and then he called up to the CF floor and introduced us to a normal 16 year old, who was having a tune up. Our fears of having a sickly child pretty much went away. We'd known for a week that there was always the possibility, but the results on paper were a shocker.

We just tried taking it one day at a time. Focused on treatments, meds, trying to get him home from the NICU. We try to be very proactive with DS's treatments -- vest/cpt 3 times a day -- more if he's sick. Keeping him active.. Just try to ENJOY your kids and not focus so much on the what ifs.
 
R

Ratatosk

Administrator
Staff member
Exactly 4 years ago this week we got DS's diagnosis. Shock, rage, disbelief -- crying jags for hours. Fortunately a CF doctor was sent over to visit with us a few hours after the genetic blood tests came back -- he went over cf, treatments and then he called up to the CF floor and introduced us to a normal 16 year old, who was having a tune up. Our fears of having a sickly child pretty much went away. We'd known for a week that there was always the possibility, but the results on paper were a shocker.

We just tried taking it one day at a time. Focused on treatments, meds, trying to get him home from the NICU. We try to be very proactive with DS's treatments -- vest/cpt 3 times a day -- more if he's sick. Keeping him active.. Just try to ENJOY your kids and not focus so much on the what ifs.
 
R

Ratatosk

Administrator
Staff member
Exactly 4 years ago this week we got DS's diagnosis. Shock, rage, disbelief -- crying jags for hours. Fortunately a CF doctor was sent over to visit with us a few hours after the genetic blood tests came back -- he went over cf, treatments and then he called up to the CF floor and introduced us to a normal 16 year old, who was having a tune up. Our fears of having a sickly child pretty much went away. We'd known for a week that there was always the possibility, but the results on paper were a shocker.

We just tried taking it one day at a time. Focused on treatments, meds, trying to get him home from the NICU. We try to be very proactive with DS's treatments -- vest/cpt 3 times a day -- more if he's sick. Keeping him active.. Just try to ENJOY your kids and not focus so much on the what ifs.
 
R

Ratatosk

Administrator
Staff member
Exactly 4 years ago this week we got DS's diagnosis. Shock, rage, disbelief -- crying jags for hours. Fortunately a CF doctor was sent over to visit with us a few hours after the genetic blood tests came back -- he went over cf, treatments and then he called up to the CF floor and introduced us to a normal 16 year old, who was having a tune up. Our fears of having a sickly child pretty much went away. We'd known for a week that there was always the possibility, but the results on paper were a shocker.

We just tried taking it one day at a time. Focused on treatments, meds, trying to get him home from the NICU. We try to be very proactive with DS's treatments -- vest/cpt 3 times a day -- more if he's sick. Keeping him active.. Just try to ENJOY your kids and not focus so much on the what ifs.
 
R

Ratatosk

Administrator
Staff member
Exactly 4 years ago this week we got DS's diagnosis. Shock, rage, disbelief -- crying jags for hours. Fortunately a CF doctor was sent over to visit with us a few hours after the genetic blood tests came back -- he went over cf, treatments and then he called up to the CF floor and introduced us to a normal 16 year old, who was having a tune up. Our fears of having a sickly child pretty much went away. We'd known for a week that there was always the possibility, but the results on paper were a shocker.

We just tried taking it one day at a time. Focused on treatments, meds, trying to get him home from the NICU. We try to be very proactive with DS's treatments -- vest/cpt 3 times a day -- more if he's sick. Keeping him active.. Just try to ENJOY your kids and not focus so much on the what ifs.
 
R

Ratatosk

Administrator
Staff member
Exactly 4 years ago this week we got DS's diagnosis. Shock, rage, disbelief -- crying jags for hours. Fortunately a CF doctor was sent over to visit with us a few hours after the genetic blood tests came back -- he went over cf, treatments and then he called up to the CF floor and introduced us to a normal 16 year old, who was having a tune up. Our fears of having a sickly child pretty much went away. We'd known for a week that there was always the possibility, but the results on paper were a shocker.

We just tried taking it one day at a time. Focused on treatments, meds, trying to get him home from the NICU. We try to be very proactive with DS's treatments -- vest/cpt 3 times a day -- more if he's sick. Keeping him active.. Just try to ENJOY your kids and not focus so much on the what ifs.
 
B

blkmsmommy

New member
oh yes i know that feeling. my daughter was diagnsised at 6 weeks and i was only 18 it was a horrible feeling. i was so upset and mad. but every thing happends for a reason. my sure you listen to the doctors.
 
B

blkmsmommy

New member
oh yes i know that feeling. my daughter was diagnsised at 6 weeks and i was only 18 it was a horrible feeling. i was so upset and mad. but every thing happends for a reason. my sure you listen to the doctors.
 
B

blkmsmommy

New member
oh yes i know that feeling. my daughter was diagnsised at 6 weeks and i was only 18 it was a horrible feeling. i was so upset and mad. but every thing happends for a reason. my sure you listen to the doctors.
 
B

blkmsmommy

New member
oh yes i know that feeling. my daughter was diagnsised at 6 weeks and i was only 18 it was a horrible feeling. i was so upset and mad. but every thing happends for a reason. my sure you listen to the doctors.
 
B

blkmsmommy

New member
oh yes i know that feeling. my daughter was diagnsised at 6 weeks and i was only 18 it was a horrible feeling. i was so upset and mad. but every thing happends for a reason. my sure you listen to the doctors.
 
B

blkmsmommy

New member
oh yes i know that feeling. my daughter was diagnsised at 6 weeks and i was only 18 it was a horrible feeling. i was so upset and mad. but every thing happends for a reason. my sure you listen to the doctors.
 
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