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Ratatosk · Jun 4, 2007

Just take it one step at a time. It's overwhelming at first, but pretty soon the meds and treatments will be second nature. While I wasn't happy about it -- wished DS hadn't been diagnosed at birth, so we could just enjoy him as a baby, it was a good thing -- that we could start CPT, nebulizer treatments, enzymes, etc. right away. I still get kinda cranky when the doctor adds another drug -- think it took me half a year to get over the addition of pulmozyme and zithromax. Just seems like one more thing to remember. But then I tell myself, what are our choices -- can't just give up. We gotta do what we can to keep DS happy and healthy.

Easier said than done, but one of DS's doctors early on gave us this advice "try not to dwell on the CF diagnosis. If you have to, limit yourself to 15 minutes a day". So I just tried to focus on enjoying my baby.

The first few months I kept lists of the meds we gave DS, when we gave those to him, how much formula he drank, number of enzymes, poop... We were going to clinic appointments every 2-3 months, so they'd need to know all the gory details. Nowdays, I still keep track of his meds -- keep a white board in the kitchen cupboard.

Ratatosk · Jun 4, 2007

Just take it one step at a time. It's overwhelming at first, but pretty soon the meds and treatments will be second nature. While I wasn't happy about it -- wished DS hadn't been diagnosed at birth, so we could just enjoy him as a baby, it was a good thing -- that we could start CPT, nebulizer treatments, enzymes, etc. right away. I still get kinda cranky when the doctor adds another drug -- think it took me half a year to get over the addition of pulmozyme and zithromax. Just seems like one more thing to remember. But then I tell myself, what are our choices -- can't just give up. We gotta do what we can to keep DS happy and healthy.

Easier said than done, but one of DS's doctors early on gave us this advice "try not to dwell on the CF diagnosis. If you have to, limit yourself to 15 minutes a day". So I just tried to focus on enjoying my baby.

The first few months I kept lists of the meds we gave DS, when we gave those to him, how much formula he drank, number of enzymes, poop... We were going to clinic appointments every 2-3 months, so they'd need to know all the gory details. Nowdays, I still keep track of his meds -- keep a white board in the kitchen cupboard.

tammykrumrey · Jun 4, 2007

Brande,

I am sorry that you are having to deal with so much so quickly.

I have two daughters, and both have CF. The first one was dx when she was 14 months old (and I was 5 pregnant with my second child at the time). Four months later my second daughter was dx at 4 weeks old via sweat test and then confirmed with genetic testing. We were completely crushed.

My nephew, who also has CF, was 7 years old at the time, so I was very familiar with what the disease was and what it meant, although never in my wildest dreams thought I was going to have children with it as well.

I think it would be standard to have the genetic testing done on your daughter just to be sure.

We are here for help when you need it. After the initial shock wears off, you will have more questions and concerns. Now that you know, you can start taking care of your children to keep them as healthy as possible. Knowledge really is power.

Things will begin to look better for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Jun 4, 2007

Brande,

I am sorry that you are having to deal with so much so quickly.

I have two daughters, and both have CF. The first one was dx when she was 14 months old (and I was 5 pregnant with my second child at the time). Four months later my second daughter was dx at 4 weeks old via sweat test and then confirmed with genetic testing. We were completely crushed.

My nephew, who also has CF, was 7 years old at the time, so I was very familiar with what the disease was and what it meant, although never in my wildest dreams thought I was going to have children with it as well.

I think it would be standard to have the genetic testing done on your daughter just to be sure.

We are here for help when you need it. After the initial shock wears off, you will have more questions and concerns. Now that you know, you can start taking care of your children to keep them as healthy as possible. Knowledge really is power.

Things will begin to look better for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Jun 4, 2007

Brande,

I am sorry that you are having to deal with so much so quickly.

I have two daughters, and both have CF. The first one was dx when she was 14 months old (and I was 5 pregnant with my second child at the time). Four months later my second daughter was dx at 4 weeks old via sweat test and then confirmed with genetic testing. We were completely crushed.

My nephew, who also has CF, was 7 years old at the time, so I was very familiar with what the disease was and what it meant, although never in my wildest dreams thought I was going to have children with it as well.

I think it would be standard to have the genetic testing done on your daughter just to be sure.

We are here for help when you need it. After the initial shock wears off, you will have more questions and concerns. Now that you know, you can start taking care of your children to keep them as healthy as possible. Knowledge really is power.

Things will begin to look better for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Jun 4, 2007

Brande,

I am sorry that you are having to deal with so much so quickly.

I have two daughters, and both have CF. The first one was dx when she was 14 months old (and I was 5 pregnant with my second child at the time). Four months later my second daughter was dx at 4 weeks old via sweat test and then confirmed with genetic testing. We were completely crushed.

My nephew, who also has CF, was 7 years old at the time, so I was very familiar with what the disease was and what it meant, although never in my wildest dreams thought I was going to have children with it as well.

I think it would be standard to have the genetic testing done on your daughter just to be sure.

We are here for help when you need it. After the initial shock wears off, you will have more questions and concerns. Now that you know, you can start taking care of your children to keep them as healthy as possible. Knowledge really is power.

Things will begin to look better for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Jun 4, 2007

Brande,

I am sorry that you are having to deal with so much so quickly.

I have two daughters, and both have CF. The first one was dx when she was 14 months old (and I was 5 pregnant with my second child at the time). Four months later my second daughter was dx at 4 weeks old via sweat test and then confirmed with genetic testing. We were completely crushed.

My nephew, who also has CF, was 7 years old at the time, so I was very familiar with what the disease was and what it meant, although never in my wildest dreams thought I was going to have children with it as well.

I think it would be standard to have the genetic testing done on your daughter just to be sure.

We are here for help when you need it. After the initial shock wears off, you will have more questions and concerns. Now that you know, you can start taking care of your children to keep them as healthy as possible. Knowledge really is power.

Things will begin to look better for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Jun 4, 2007

Brande,

I am sorry that you are having to deal with so much so quickly.

I have two daughters, and both have CF. The first one was dx when she was 14 months old (and I was 5 pregnant with my second child at the time). Four months later my second daughter was dx at 4 weeks old via sweat test and then confirmed with genetic testing. We were completely crushed.

My nephew, who also has CF, was 7 years old at the time, so I was very familiar with what the disease was and what it meant, although never in my wildest dreams thought I was going to have children with it as well.

I think it would be standard to have the genetic testing done on your daughter just to be sure.

We are here for help when you need it. After the initial shock wears off, you will have more questions and concerns. Now that you know, you can start taking care of your children to keep them as healthy as possible. Knowledge really is power.

Things will begin to look better for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

JazzysMom · Jun 4, 2007

It is overwhelming so all you can do is take one day at a time and if that is too much lower it to one hour at a time. HUGS....

JazzysMom · Jun 4, 2007

It is overwhelming so all you can do is take one day at a time and if that is too much lower it to one hour at a time. HUGS....

JazzysMom · Jun 4, 2007

It is overwhelming so all you can do is take one day at a time and if that is too much lower it to one hour at a time. HUGS....

JazzysMom · Jun 4, 2007

It is overwhelming so all you can do is take one day at a time and if that is too much lower it to one hour at a time. HUGS....

JazzysMom · Jun 4, 2007

It is overwhelming so all you can do is take one day at a time and if that is too much lower it to one hour at a time. HUGS....

JazzysMom · Jun 4, 2007

It is overwhelming so all you can do is take one day at a time and if that is too much lower it to one hour at a time. HUGS....

okok · Jun 4, 2007