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Expecting Parents of Child with CF
- Thread starter ejwiegert
- Start date
kayleesgrandma
New member
Hope everything turns out ok, we'll be passing out the pink cigars!
kayleesgrandma
New member
PS--I told the adult site!
thelizardqueen
New member
Hope everything goes well! Anxiously awaiting the arrival of baby Abby!
scarbrough
New member
My daughter, 17 mos old now, was diagnosed @ 7 mos of age. We have had our ups & downs. I felt like I was hitting wall after wall..I couldn't get support from anyone..just keep fighting..My family was great, but our community was hard to get support from, @ first. My husband had to switch jobs right after we found out & we have had some major insurance issues..I am a stay @ home mom, I decided to do this after having my now 5yr old in daycare & babysitters coming to our house for a little over 2 yrs. Since I was already home, it really wasn't a major issue. I am looking foward to working again. I'll just wait until my youngest starts school. I have found plenty to do, volunteering @ school & most importantly with the Cystic Fibrosis Foundation. We love helping to raise money through different fundraisers. If I worked, I wouldn't have time for this. Yes,we could use another income..we need a new vehicle..we are paying monthly on doctor bills..I don't shop like I'd like to..I don't get my hair done as often...we clip coupons..but we're not missing out on anything..my husband is a good provider & I know what care my daughter is getting..this is what works best for us...I would never condemn you deciding to work...It's done everyday & everyone is just fine!
In regards to siblings, my son has become my big helper. He is so smart & has learned so quickly..he prays for his sister everyday..he even raised almost $600 himself for the CFF Great Strides Walk by asking for donations from friends & schoolmates. We have hand sanitizer everywhere, even in the car & diaper bag..We just tell him it's time to get a "squirt". Sometimes he even reminds us. If he is sick, he knows he needs to stay away from the baby & vice-versa. We have explained to him that his sister is just like us, but she has trouble fighting germs & she has to take medicine for it..It all becomes routine..it's the hardest on you...Jacob helps with percussion treatments...Hannah can hold her nebulizer mask herself & prefers to do it...Try not to baby your child with cf..it's very hard not to ....but your other child will notice the difference..that was very hard for us to control & still is..We are encouraged by other people affected by CF..we know a woman, 27 yrs old, works for a financial firm-very professional, married, adopted 1 child...healthy to my knowledge..and loving life..THAT GIVES US GREAT HOPE!
In regards to siblings, my son has become my big helper. He is so smart & has learned so quickly..he prays for his sister everyday..he even raised almost $600 himself for the CFF Great Strides Walk by asking for donations from friends & schoolmates. We have hand sanitizer everywhere, even in the car & diaper bag..We just tell him it's time to get a "squirt". Sometimes he even reminds us. If he is sick, he knows he needs to stay away from the baby & vice-versa. We have explained to him that his sister is just like us, but she has trouble fighting germs & she has to take medicine for it..It all becomes routine..it's the hardest on you...Jacob helps with percussion treatments...Hannah can hold her nebulizer mask herself & prefers to do it...Try not to baby your child with cf..it's very hard not to ....but your other child will notice the difference..that was very hard for us to control & still is..We are encouraged by other people affected by CF..we know a woman, 27 yrs old, works for a financial firm-very professional, married, adopted 1 child...healthy to my knowledge..and loving life..THAT GIVES US GREAT HOPE!
R
RH3
Guest
My son is almost 13 and was dx @ 3 mo. How fortunate that you do
not have to go through the Oh my God what is wrong with my Kid
scene. He was sick at birth and it took us 3 mo. to get find
someone to figure it out. I stayed home with him for a while. I
have worked off & on. He currently has a lung infection so I am
home. I breastfed Sam and it has it's issues. I had to supplement
him with applesauce and a Polycose it added calories Scandical is
about the same. You have come to the right place. I am fairly new
here and I have learned a lot here.
not have to go through the Oh my God what is wrong with my Kid
scene. He was sick at birth and it took us 3 mo. to get find
someone to figure it out. I stayed home with him for a while. I
have worked off & on. He currently has a lung infection so I am
home. I breastfed Sam and it has it's issues. I had to supplement
him with applesauce and a Polycose it added calories Scandical is
about the same. You have come to the right place. I am fairly new
here and I have learned a lot here.
Hello to all.
My name is Dimitri. My son Chris was dx in NY with CF at 9 months old. He is now 7 years old and is doing very very well. We are of Haitian family with great grand parents of french and german descents. When Chris was dx at 9 months it was because we kept taking him to the doctors for more check up because many times he would cry non stop when he was about 4 months old to 6 months. However, he was a fighter since birth and it shows by the great stride he made. Like you said, each CF patient are different.
Yours truly,
Dimitri from Miramar, Florida
<img src="i/expressions/face-icon-small-happy.gif" border="0">
My name is Dimitri. My son Chris was dx in NY with CF at 9 months old. He is now 7 years old and is doing very very well. We are of Haitian family with great grand parents of french and german descents. When Chris was dx at 9 months it was because we kept taking him to the doctors for more check up because many times he would cry non stop when he was about 4 months old to 6 months. However, he was a fighter since birth and it shows by the great stride he made. Like you said, each CF patient are different.
Yours truly,
Dimitri from Miramar, Florida
<img src="i/expressions/face-icon-small-happy.gif" border="0">
Just had to make a quick reply to your post my when my daughter was born she had the EXACT things happen to her, as you know it was beyond awful and as if that is not bad enough to find out that it means they have CF which is fatal!!! Anyway just God Bless you and I hope that your son is well.
karismom
karismom
Just had to make a quick reply to your post my when my daughter was born she had the EXACT things happen to her, as you know it was beyond awful and as if that is not bad enough to find out that it means they have CF which is fatal!!! Anyway just God Bless you and I hope that your son is well.
karismom
karismom
Just had to make a quick reply to your post my when my daughter was born she had the EXACT things happen to her, as you know it was beyond awful and as if that is not bad enough to find out that it means they have CF which is fatal!!! Anyway just God Bless you and I hope that your son is well.
karismom
karismom
Hi
My heart goes out to you regarding your news. But CF diag now is not as bad as 20 yrs ago. I have 2 daughters 25, and 21 the oldest has had 2 transplants and is very ill and the younger has FEV's in the 90's!!! And my ex husband and I BOTH carry the DEltaF508 gene! So don't put A WHOLE LOT of stock regarding how sick she'll be because of your genes. Homepaths and garlic and myrrh, and oxygen drops, and the newest treatment at CF centers inhaling sodium chloride and saline would all really help keep your daughter healthier. God Bless you and your family.
karismom
My heart goes out to you regarding your news. But CF diag now is not as bad as 20 yrs ago. I have 2 daughters 25, and 21 the oldest has had 2 transplants and is very ill and the younger has FEV's in the 90's!!! And my ex husband and I BOTH carry the DEltaF508 gene! So don't put A WHOLE LOT of stock regarding how sick she'll be because of your genes. Homepaths and garlic and myrrh, and oxygen drops, and the newest treatment at CF centers inhaling sodium chloride and saline would all really help keep your daughter healthier. God Bless you and your family.
karismom
Hi
My heart goes out to you regarding your news. But CF diag now is not as bad as 20 yrs ago. I have 2 daughters 25, and 21 the oldest has had 2 transplants and is very ill and the younger has FEV's in the 90's!!! And my ex husband and I BOTH carry the DEltaF508 gene! So don't put A WHOLE LOT of stock regarding how sick she'll be because of your genes. Homepaths and garlic and myrrh, and oxygen drops, and the newest treatment at CF centers inhaling sodium chloride and saline would all really help keep your daughter healthier. God Bless you and your family.
karismom
My heart goes out to you regarding your news. But CF diag now is not as bad as 20 yrs ago. I have 2 daughters 25, and 21 the oldest has had 2 transplants and is very ill and the younger has FEV's in the 90's!!! And my ex husband and I BOTH carry the DEltaF508 gene! So don't put A WHOLE LOT of stock regarding how sick she'll be because of your genes. Homepaths and garlic and myrrh, and oxygen drops, and the newest treatment at CF centers inhaling sodium chloride and saline would all really help keep your daughter healthier. God Bless you and your family.
karismom
Hi
My heart goes out to you regarding your news. But CF diag now is not as bad as 20 yrs ago. I have 2 daughters 25, and 21 the oldest has had 2 transplants and is very ill and the younger has FEV's in the 90's!!! And my ex husband and I BOTH carry the DEltaF508 gene! So don't put A WHOLE LOT of stock regarding how sick she'll be because of your genes. Homepaths and garlic and myrrh, and oxygen drops, and the newest treatment at CF centers inhaling sodium chloride and saline would all really help keep your daughter healthier. God Bless you and your family.
karismom
My heart goes out to you regarding your news. But CF diag now is not as bad as 20 yrs ago. I have 2 daughters 25, and 21 the oldest has had 2 transplants and is very ill and the younger has FEV's in the 90's!!! And my ex husband and I BOTH carry the DEltaF508 gene! So don't put A WHOLE LOT of stock regarding how sick she'll be because of your genes. Homepaths and garlic and myrrh, and oxygen drops, and the newest treatment at CF centers inhaling sodium chloride and saline would all really help keep your daughter healthier. God Bless you and your family.
karismom
Emily,
Congratulations on your new baby. I too am a teacher which provides health care for my family. A CF diagnoisis is devistating and impacts the whole family. I decided to ask and was granted a leave for 9 months. I wanted to protect her from the flu and rsv. I also breastfed her for a total of 17 months. She was very healthy and steadily gained weight. I feel that I gave her the best start I could. She began day care at 10 months old. My daughter is now 26 months old, happy and healthy. We live by the philosopy that if everyone's healthy, I will go to work. If not I will stay home. So far so good. I was able to find a wonderful daycare center. She loves it there and is so happy. They have a nurse and I worked with her to develop her healthcare plan. She wakes in the morning does her pat-pat and nebbiez and at school takes enzymes with meals and snacks. After dinner it's pat-pat and nebbiez again. We take it one day at a time and that seems to make everything managable. Good luck with everything. You will make the right choice.
Donna in NY
Congratulations on your new baby. I too am a teacher which provides health care for my family. A CF diagnoisis is devistating and impacts the whole family. I decided to ask and was granted a leave for 9 months. I wanted to protect her from the flu and rsv. I also breastfed her for a total of 17 months. She was very healthy and steadily gained weight. I feel that I gave her the best start I could. She began day care at 10 months old. My daughter is now 26 months old, happy and healthy. We live by the philosopy that if everyone's healthy, I will go to work. If not I will stay home. So far so good. I was able to find a wonderful daycare center. She loves it there and is so happy. They have a nurse and I worked with her to develop her healthcare plan. She wakes in the morning does her pat-pat and nebbiez and at school takes enzymes with meals and snacks. After dinner it's pat-pat and nebbiez again. We take it one day at a time and that seems to make everything managable. Good luck with everything. You will make the right choice.
Donna in NY
Emily,
Congratulations on your new baby. I too am a teacher which provides health care for my family. A CF diagnoisis is devistating and impacts the whole family. I decided to ask and was granted a leave for 9 months. I wanted to protect her from the flu and rsv. I also breastfed her for a total of 17 months. She was very healthy and steadily gained weight. I feel that I gave her the best start I could. She began day care at 10 months old. My daughter is now 26 months old, happy and healthy. We live by the philosopy that if everyone's healthy, I will go to work. If not I will stay home. So far so good. I was able to find a wonderful daycare center. She loves it there and is so happy. They have a nurse and I worked with her to develop her healthcare plan. She wakes in the morning does her pat-pat and nebbiez and at school takes enzymes with meals and snacks. After dinner it's pat-pat and nebbiez again. We take it one day at a time and that seems to make everything managable. Good luck with everything. You will make the right choice.
Donna in NY
Congratulations on your new baby. I too am a teacher which provides health care for my family. A CF diagnoisis is devistating and impacts the whole family. I decided to ask and was granted a leave for 9 months. I wanted to protect her from the flu and rsv. I also breastfed her for a total of 17 months. She was very healthy and steadily gained weight. I feel that I gave her the best start I could. She began day care at 10 months old. My daughter is now 26 months old, happy and healthy. We live by the philosopy that if everyone's healthy, I will go to work. If not I will stay home. So far so good. I was able to find a wonderful daycare center. She loves it there and is so happy. They have a nurse and I worked with her to develop her healthcare plan. She wakes in the morning does her pat-pat and nebbiez and at school takes enzymes with meals and snacks. After dinner it's pat-pat and nebbiez again. We take it one day at a time and that seems to make everything managable. Good luck with everything. You will make the right choice.
Donna in NY
Emily,
Congratulations on your new baby. I too am a teacher which provides health care for my family. A CF diagnoisis is devistating and impacts the whole family. I decided to ask and was granted a leave for 9 months. I wanted to protect her from the flu and rsv. I also breastfed her for a total of 17 months. She was very healthy and steadily gained weight. I feel that I gave her the best start I could. She began day care at 10 months old. My daughter is now 26 months old, happy and healthy. We live by the philosopy that if everyone's healthy, I will go to work. If not I will stay home. So far so good. I was able to find a wonderful daycare center. She loves it there and is so happy. They have a nurse and I worked with her to develop her healthcare plan. She wakes in the morning does her pat-pat and nebbiez and at school takes enzymes with meals and snacks. After dinner it's pat-pat and nebbiez again. We take it one day at a time and that seems to make everything managable. Good luck with everything. You will make the right choice.
Donna in NY
Congratulations on your new baby. I too am a teacher which provides health care for my family. A CF diagnoisis is devistating and impacts the whole family. I decided to ask and was granted a leave for 9 months. I wanted to protect her from the flu and rsv. I also breastfed her for a total of 17 months. She was very healthy and steadily gained weight. I feel that I gave her the best start I could. She began day care at 10 months old. My daughter is now 26 months old, happy and healthy. We live by the philosopy that if everyone's healthy, I will go to work. If not I will stay home. So far so good. I was able to find a wonderful daycare center. She loves it there and is so happy. They have a nurse and I worked with her to develop her healthcare plan. She wakes in the morning does her pat-pat and nebbiez and at school takes enzymes with meals and snacks. After dinner it's pat-pat and nebbiez again. We take it one day at a time and that seems to make everything managable. Good luck with everything. You will make the right choice.
Donna in NY
as an 18 year old teenager with cystic fibrosis, i believe that your baby girl will need what every child needs... love and support!! yes for her and also you as parents there will be times when things are frustrating and she will feel that she wants to be "normall" (trust me, i know) ,but what she needs to be reminded is that she is normall and at the end of the day, most cf patients, especially kids (certainly the ones i know and have met through clinics etc) will at such stage rebel, but this is totally normall as you can understand...
Honestly though, it gets easier with time and you will get used to the treatments neede and there is so much support from the cf clinics and people like myself, who too, need to talk...
If you would ever like some friendly advice etc you can always contact me by email. cf_zlr@hotmail.com
Zowie
Honestly though, it gets easier with time and you will get used to the treatments neede and there is so much support from the cf clinics and people like myself, who too, need to talk...
If you would ever like some friendly advice etc you can always contact me by email. cf_zlr@hotmail.com
Zowie
as an 18 year old teenager with cystic fibrosis, i believe that your baby girl will need what every child needs... love and support!! yes for her and also you as parents there will be times when things are frustrating and she will feel that she wants to be "normall" (trust me, i know) ,but what she needs to be reminded is that she is normall and at the end of the day, most cf patients, especially kids (certainly the ones i know and have met through clinics etc) will at such stage rebel, but this is totally normall as you can understand...
Honestly though, it gets easier with time and you will get used to the treatments neede and there is so much support from the cf clinics and people like myself, who too, need to talk...
If you would ever like some friendly advice etc you can always contact me by email. cf_zlr@hotmail.com
Zowie
Honestly though, it gets easier with time and you will get used to the treatments neede and there is so much support from the cf clinics and people like myself, who too, need to talk...
If you would ever like some friendly advice etc you can always contact me by email. cf_zlr@hotmail.com
Zowie
as an 18 year old teenager with cystic fibrosis, i believe that your baby girl will need what every child needs... love and support!! yes for her and also you as parents there will be times when things are frustrating and she will feel that she wants to be "normall" (trust me, i know) ,but what she needs to be reminded is that she is normall and at the end of the day, most cf patients, especially kids (certainly the ones i know and have met through clinics etc) will at such stage rebel, but this is totally normall as you can understand...
Honestly though, it gets easier with time and you will get used to the treatments neede and there is so much support from the cf clinics and people like myself, who too, need to talk...
If you would ever like some friendly advice etc you can always contact me by email. cf_zlr@hotmail.com
Zowie
Honestly though, it gets easier with time and you will get used to the treatments neede and there is so much support from the cf clinics and people like myself, who too, need to talk...
If you would ever like some friendly advice etc you can always contact me by email. cf_zlr@hotmail.com
Zowie