What can I say?..

[Ratatosk]

Our son was diagnosed about a week after he was born and spent the first 6 weeks of life in the hospital recovering from bowel obstruction surgery, a couple of infections. During that time we learned a lot about CF, chest physiotherapy, nebulizers, medications, enzymes... My husband's fear was that DS was going to be the sickly child that couldn't participate in regular activities, that he wouldn't have any friends... Today he's a busy 4 1/2 year old -- goes to preschool, swimming lessons, gymnastics. Loves to play outdoors.

The diagnosis was overwhelming at first. All the new things we had to learn. Sorta felt that we missed out on a lot of baby milestones and couldn't just enjoy him as a baby. I was always worried he'd get sick... All those what ifs....

I can relate to the messy diapers. Even though DS was on enzymes, took a little while to get them adjusted. I seem to recall changing his diaper shortly after a feeding and he'd poo during the diaper change -- I swear I'd go thru 3 diapers and then he'd start peeing all over me <img src="i/expressions/face-icon-small-smile.gif" border="0">

We still worry about the future. Especially if he gets a cold. But we just try to focus on him as a little boy and not so much the cf diagnosis.

 

[Ratatosk]

Our son was diagnosed about a week after he was born and spent the first 6 weeks of life in the hospital recovering from bowel obstruction surgery, a couple of infections. During that time we learned a lot about CF, chest physiotherapy, nebulizers, medications, enzymes... My husband's fear was that DS was going to be the sickly child that couldn't participate in regular activities, that he wouldn't have any friends... Today he's a busy 4 1/2 year old -- goes to preschool, swimming lessons, gymnastics. Loves to play outdoors.

The diagnosis was overwhelming at first. All the new things we had to learn. Sorta felt that we missed out on a lot of baby milestones and couldn't just enjoy him as a baby. I was always worried he'd get sick... All those what ifs....

I can relate to the messy diapers. Even though DS was on enzymes, took a little while to get them adjusted. I seem to recall changing his diaper shortly after a feeding and he'd poo during the diaper change -- I swear I'd go thru 3 diapers and then he'd start peeing all over me <img src="i/expressions/face-icon-small-smile.gif" border="0">

We still worry about the future. Especially if he gets a cold. But we just try to focus on him as a little boy and not so much the cf diagnosis.

 

[Ratatosk]

Our son was diagnosed about a week after he was born and spent the first 6 weeks of life in the hospital recovering from bowel obstruction surgery, a couple of infections. During that time we learned a lot about CF, chest physiotherapy, nebulizers, medications, enzymes... My husband's fear was that DS was going to be the sickly child that couldn't participate in regular activities, that he wouldn't have any friends... Today he's a busy 4 1/2 year old -- goes to preschool, swimming lessons, gymnastics. Loves to play outdoors.

The diagnosis was overwhelming at first. All the new things we had to learn. Sorta felt that we missed out on a lot of baby milestones and couldn't just enjoy him as a baby. I was always worried he'd get sick... All those what ifs....

I can relate to the messy diapers. Even though DS was on enzymes, took a little while to get them adjusted. I seem to recall changing his diaper shortly after a feeding and he'd poo during the diaper change -- I swear I'd go thru 3 diapers and then he'd start peeing all over me <img src="i/expressions/face-icon-small-smile.gif" border="0">

We still worry about the future. Especially if he gets a cold. But we just try to focus on him as a little boy and not so much the cf diagnosis.

 

[Ratatosk]

Our son was diagnosed about a week after he was born and spent the first 6 weeks of life in the hospital recovering from bowel obstruction surgery, a couple of infections. During that time we learned a lot about CF, chest physiotherapy, nebulizers, medications, enzymes... My husband's fear was that DS was going to be the sickly child that couldn't participate in regular activities, that he wouldn't have any friends... Today he's a busy 4 1/2 year old -- goes to preschool, swimming lessons, gymnastics. Loves to play outdoors.

The diagnosis was overwhelming at first. All the new things we had to learn. Sorta felt that we missed out on a lot of baby milestones and couldn't just enjoy him as a baby. I was always worried he'd get sick... All those what ifs....

I can relate to the messy diapers. Even though DS was on enzymes, took a little while to get them adjusted. I seem to recall changing his diaper shortly after a feeding and he'd poo during the diaper change -- I swear I'd go thru 3 diapers and then he'd start peeing all over me <img src="i/expressions/face-icon-small-smile.gif" border="0">

We still worry about the future. Especially if he gets a cold. But we just try to focus on him as a little boy and not so much the cf diagnosis.

 

[Ratatosk]

Our son was diagnosed about a week after he was born and spent the first 6 weeks of life in the hospital recovering from bowel obstruction surgery, a couple of infections. During that time we learned a lot about CF, chest physiotherapy, nebulizers, medications, enzymes... My husband's fear was that DS was going to be the sickly child that couldn't participate in regular activities, that he wouldn't have any friends... Today he's a busy 4 1/2 year old -- goes to preschool, swimming lessons, gymnastics. Loves to play outdoors.

The diagnosis was overwhelming at first. All the new things we had to learn. Sorta felt that we missed out on a lot of baby milestones and couldn't just enjoy him as a baby. I was always worried he'd get sick... All those what ifs....

I can relate to the messy diapers. Even though DS was on enzymes, took a little while to get them adjusted. I seem to recall changing his diaper shortly after a feeding and he'd poo during the diaper change -- I swear I'd go thru 3 diapers and then he'd start peeing all over me <img src="i/expressions/face-icon-small-smile.gif" border="0">

We still worry about the future. Especially if he gets a cold. But we just try to focus on him as a little boy and not so much the cf diagnosis.

 

[SARAHSARAH253]

Hi there,

I just want to tell you your not alone in the shock of finding out you are a carrier for CF. My husband and I both were tested after I came back as a carrier in my early blood work when I 1st got pregnant with my son early this year. My husband came back not a carrier. But that test was wrong...the only test for only so many of the CF mutations. No one on my husbands side or mine has had in CF related issues...Shock to everyone.

( My pregnancy went well...but when are son was born he had a bowel obstruction...It was a scarey scarey time...He was born only at 5.5 pounds...and now he is 4 months is 13 pounds...I have heard that is a good weight gain.....So, trust in your CF team...and time helps...It's been only 2 months since we got the news on our boy...But everyday get's easier....

 

[SARAHSARAH253]

Hi there,

I just want to tell you your not alone in the shock of finding out you are a carrier for CF. My husband and I both were tested after I came back as a carrier in my early blood work when I 1st got pregnant with my son early this year. My husband came back not a carrier. But that test was wrong...the only test for only so many of the CF mutations. No one on my husbands side or mine has had in CF related issues...Shock to everyone.

( My pregnancy went well...but when are son was born he had a bowel obstruction...It was a scarey scarey time...He was born only at 5.5 pounds...and now he is 4 months is 13 pounds...I have heard that is a good weight gain.....So, trust in your CF team...and time helps...It's been only 2 months since we got the news on our boy...But everyday get's easier....

 

[SARAHSARAH253]

Hi there,

I just want to tell you your not alone in the shock of finding out you are a carrier for CF. My husband and I both were tested after I came back as a carrier in my early blood work when I 1st got pregnant with my son early this year. My husband came back not a carrier. But that test was wrong...the only test for only so many of the CF mutations. No one on my husbands side or mine has had in CF related issues...Shock to everyone.

( My pregnancy went well...but when are son was born he had a bowel obstruction...It was a scarey scarey time...He was born only at 5.5 pounds...and now he is 4 months is 13 pounds...I have heard that is a good weight gain.....So, trust in your CF team...and time helps...It's been only 2 months since we got the news on our boy...But everyday get's easier....

 

[SARAHSARAH253]

Hi there,

I just want to tell you your not alone in the shock of finding out you are a carrier for CF. My husband and I both were tested after I came back as a carrier in my early blood work when I 1st got pregnant with my son early this year. My husband came back not a carrier. But that test was wrong...the only test for only so many of the CF mutations. No one on my husbands side or mine has had in CF related issues...Shock to everyone.

( My pregnancy went well...but when are son was born he had a bowel obstruction...It was a scarey scarey time...He was born only at 5.5 pounds...and now he is 4 months is 13 pounds...I have heard that is a good weight gain.....So, trust in your CF team...and time helps...It's been only 2 months since we got the news on our boy...But everyday get's easier....

 

[SARAHSARAH253]

Hi there,

I just want to tell you your not alone in the shock of finding out you are a carrier for CF. My husband and I both were tested after I came back as a carrier in my early blood work when I 1st got pregnant with my son early this year. My husband came back not a carrier. But that test was wrong...the only test for only so many of the CF mutations. No one on my husbands side or mine has had in CF related issues...Shock to everyone.

( My pregnancy went well...but when are son was born he had a bowel obstruction...It was a scarey scarey time...He was born only at 5.5 pounds...and now he is 4 months is 13 pounds...I have heard that is a good weight gain.....So, trust in your CF team...and time helps...It's been only 2 months since we got the news on our boy...But everyday get's easier....

 

[JORDYSMOM]

Hi Mohammad. Welcome to the site. Congratulations on your son! I am always sorry to hear of another family who is facing this disease, but I'm also glad for your diagnosis, so that your child can get the proper treatment.

I know CF is scary. I know you have read so much sad information about it on the internet. A lot of the information you get when you google CF is outdated. The life expectancy has been increased, and the treatment methods have come so far. CF patients are living longer, and living a better quality of life than ever before. Now that your son is getting care, he should improve greatly. You already have noticed an improvement with the enzymes. Try to stay positive. I know it's hard.

This site is full of great, up-to-date information, and more importantly, real life experiences. The patients here can and will inspire you! There is so much good here. I wish you the best for your son and your family. Ask us anything you like. Sometimes the adult forum is the best place to get answers. Just take it one step at a time, and keep us posted on how your son is doing.

Stacey

 

[JORDYSMOM]

Hi Mohammad. Welcome to the site. Congratulations on your son! I am always sorry to hear of another family who is facing this disease, but I'm also glad for your diagnosis, so that your child can get the proper treatment.

I know CF is scary. I know you have read so much sad information about it on the internet. A lot of the information you get when you google CF is outdated. The life expectancy has been increased, and the treatment methods have come so far. CF patients are living longer, and living a better quality of life than ever before. Now that your son is getting care, he should improve greatly. You already have noticed an improvement with the enzymes. Try to stay positive. I know it's hard.

This site is full of great, up-to-date information, and more importantly, real life experiences. The patients here can and will inspire you! There is so much good here. I wish you the best for your son and your family. Ask us anything you like. Sometimes the adult forum is the best place to get answers. Just take it one step at a time, and keep us posted on how your son is doing.

Stacey

 

[JORDYSMOM]

Hi Mohammad. Welcome to the site. Congratulations on your son! I am always sorry to hear of another family who is facing this disease, but I'm also glad for your diagnosis, so that your child can get the proper treatment.

I know CF is scary. I know you have read so much sad information about it on the internet. A lot of the information you get when you google CF is outdated. The life expectancy has been increased, and the treatment methods have come so far. CF patients are living longer, and living a better quality of life than ever before. Now that your son is getting care, he should improve greatly. You already have noticed an improvement with the enzymes. Try to stay positive. I know it's hard.

This site is full of great, up-to-date information, and more importantly, real life experiences. The patients here can and will inspire you! There is so much good here. I wish you the best for your son and your family. Ask us anything you like. Sometimes the adult forum is the best place to get answers. Just take it one step at a time, and keep us posted on how your son is doing.

Stacey

 

[JORDYSMOM]

Hi Mohammad. Welcome to the site. Congratulations on your son! I am always sorry to hear of another family who is facing this disease, but I'm also glad for your diagnosis, so that your child can get the proper treatment.

I know CF is scary. I know you have read so much sad information about it on the internet. A lot of the information you get when you google CF is outdated. The life expectancy has been increased, and the treatment methods have come so far. CF patients are living longer, and living a better quality of life than ever before. Now that your son is getting care, he should improve greatly. You already have noticed an improvement with the enzymes. Try to stay positive. I know it's hard.

This site is full of great, up-to-date information, and more importantly, real life experiences. The patients here can and will inspire you! There is so much good here. I wish you the best for your son and your family. Ask us anything you like. Sometimes the adult forum is the best place to get answers. Just take it one step at a time, and keep us posted on how your son is doing.

Stacey

 

[JORDYSMOM]

Hi Mohammad. Welcome to the site. Congratulations on your son! I am always sorry to hear of another family who is facing this disease, but I'm also glad for your diagnosis, so that your child can get the proper treatment.

I know CF is scary. I know you have read so much sad information about it on the internet. A lot of the information you get when you google CF is outdated. The life expectancy has been increased, and the treatment methods have come so far. CF patients are living longer, and living a better quality of life than ever before. Now that your son is getting care, he should improve greatly. You already have noticed an improvement with the enzymes. Try to stay positive. I know it's hard.

This site is full of great, up-to-date information, and more importantly, real life experiences. The patients here can and will inspire you! There is so much good here. I wish you the best for your son and your family. Ask us anything you like. Sometimes the adult forum is the best place to get answers. Just take it one step at a time, and keep us posted on how your son is doing.

Stacey

 

[welshwitch]

Hello!

There are lots of healthy people on this site who have CF. Additionally, many of them have kids, are married and have great satisfying jobs.

It will get easier. Just take it a day at a time and be sure to educate yourself. There IS a lot of really, really outdated info out there. Take it upon yourself to find the most recent info and educate those to avoid misconceptions.

I'm 28 and have had an amazing life so far and there are no signs of slowing down anytime soon. I'm looking forward to an amazing future! Fear is not an option!

Good luck.

 

[welshwitch]

Hello!

There are lots of healthy people on this site who have CF. Additionally, many of them have kids, are married and have great satisfying jobs.

It will get easier. Just take it a day at a time and be sure to educate yourself. There IS a lot of really, really outdated info out there. Take it upon yourself to find the most recent info and educate those to avoid misconceptions.

I'm 28 and have had an amazing life so far and there are no signs of slowing down anytime soon. I'm looking forward to an amazing future! Fear is not an option!

Good luck.

 

[welshwitch]

Hello!

There are lots of healthy people on this site who have CF. Additionally, many of them have kids, are married and have great satisfying jobs.

It will get easier. Just take it a day at a time and be sure to educate yourself. There IS a lot of really, really outdated info out there. Take it upon yourself to find the most recent info and educate those to avoid misconceptions.

I'm 28 and have had an amazing life so far and there are no signs of slowing down anytime soon. I'm looking forward to an amazing future! Fear is not an option!

Good luck.

 

[welshwitch]

Hello!

There are lots of healthy people on this site who have CF. Additionally, many of them have kids, are married and have great satisfying jobs.

It will get easier. Just take it a day at a time and be sure to educate yourself. There IS a lot of really, really outdated info out there. Take it upon yourself to find the most recent info and educate those to avoid misconceptions.

I'm 28 and have had an amazing life so far and there are no signs of slowing down anytime soon. I'm looking forward to an amazing future! Fear is not an option!

Good luck.

 

[welshwitch]

Hello!

There are lots of healthy people on this site who have CF. Additionally, many of them have kids, are married and have great satisfying jobs.

It will get easier. Just take it a day at a time and be sure to educate yourself. There IS a lot of really, really outdated info out there. Take it upon yourself to find the most recent info and educate those to avoid misconceptions.

I'm 28 and have had an amazing life so far and there are no signs of slowing down anytime soon. I'm looking forward to an amazing future! Fear is not an option!

Good luck.