About to have another CF child

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Liza

New member
Hi, I have two girls w/CF. My soon to be 20yr old was diagnosed one week before my youngest was born. To be honest, I didn't know anything about CF except what I read on those collection jars at the random restaurant check out counter. My husband knew more but not much more. My girls are three yrs apart. As others have said already... you just adjust your time and do what has to be done. We know no other way. I do remember the days when we didn't have to lug everything to do with treatments but we still lugged tons of kid stuff. My girls didn't have to do much until they were older. One treatment a day until they were about 12. We have never kept the girls from doing/trying whatever they wanted. Swim lessons, gymnastics, ballet, school field trips, sleepovers, multi-nite school trips, Girl Scouts, overnite camp, camping trips, cheerleading. I was fortunate that I could be a stay at home mom. I often wondered how a mom of a CF child could work. Not the how can you leave your child at home but more of how can you hold on to your job. One thing you have to remember is even though your two children both have CF, they will most likely have very different CF. Sometimes hard to understand but it's true.

Congratulations on your upcoming blessed event.
 
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Mommy2Alysa

New member
I am hoping to be able to be a stay at home after this one is born because trying to find a daycare that will take them both will be tough and I dont want to be at work worrying that my kids are going to catch a bug adn get sick and end up in teh hospital from other kids in their daycare. We'll have to see how the financial situation is before I can do that though.
 
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Mommy2Alysa

New member
I am hoping to be able to be a stay at home after this one is born because trying to find a daycare that will take them both will be tough and I dont want to be at work worrying that my kids are going to catch a bug adn get sick and end up in teh hospital from other kids in their daycare. We'll have to see how the financial situation is before I can do that though.
 
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Mommy2Alysa

New member
I am hoping to be able to be a stay at home after this one is born because trying to find a daycare that will take them both will be tough and I dont want to be at work worrying that my kids are going to catch a bug adn get sick and end up in teh hospital from other kids in their daycare. We'll have to see how the financial situation is before I can do that though.
 
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Emily65Roses

New member
Be careful how much you keep them at home, Alysa's Mom. CF kids, just as any others, need to build an immune system. I went to daycare, I went to public school, I went to parties and sleepovers, and played in the dirt. All that. And I'm doing pretty damn well.

I know you're going to do whatever you want despite what people say, but consider what I said before you lock them in the house.
 
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Emily65Roses

New member
Be careful how much you keep them at home, Alysa's Mom. CF kids, just as any others, need to build an immune system. I went to daycare, I went to public school, I went to parties and sleepovers, and played in the dirt. All that. And I'm doing pretty damn well.

I know you're going to do whatever you want despite what people say, but consider what I said before you lock them in the house.
 
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Emily65Roses

New member
Be careful how much you keep them at home, Alysa's Mom. CF kids, just as any others, need to build an immune system. I went to daycare, I went to public school, I went to parties and sleepovers, and played in the dirt. All that. And I'm doing pretty damn well.

I know you're going to do whatever you want despite what people say, but consider what I said before you lock them in the house.
 
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Mommy2Alysa

New member
Thanks Emily.

Alysa was in daycare full time from May-August last yaer and then she was diagnosed in November. I am not tooo worried about her going to daycare but with the expense of two of them its almost what I make in a year and stuff. Just checking out other options.

My husband and I are very adament about makign sure that we dont stop our kids from doing anything that any other "normal" child would do. We want them to have the best life possible.

Thanks for the advice and dont worry I am not the type to hide my kids away in a bubble. Just wondered what it was like to have a few kids with CF in daycare. Should I worry if there are OTHER CF kids there and stuff?
 
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Mommy2Alysa

New member
Thanks Emily.

Alysa was in daycare full time from May-August last yaer and then she was diagnosed in November. I am not tooo worried about her going to daycare but with the expense of two of them its almost what I make in a year and stuff. Just checking out other options.

My husband and I are very adament about makign sure that we dont stop our kids from doing anything that any other "normal" child would do. We want them to have the best life possible.

Thanks for the advice and dont worry I am not the type to hide my kids away in a bubble. Just wondered what it was like to have a few kids with CF in daycare. Should I worry if there are OTHER CF kids there and stuff?
 
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Mommy2Alysa

New member
Thanks Emily.

Alysa was in daycare full time from May-August last yaer and then she was diagnosed in November. I am not tooo worried about her going to daycare but with the expense of two of them its almost what I make in a year and stuff. Just checking out other options.

My husband and I are very adament about makign sure that we dont stop our kids from doing anything that any other "normal" child would do. We want them to have the best life possible.

Thanks for the advice and dont worry I am not the type to hide my kids away in a bubble. Just wondered what it was like to have a few kids with CF in daycare. Should I worry if there are OTHER CF kids there and stuff?
 
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Emily65Roses

New member
Okay I am FULLY annoyed. I just had a really long response written and I hit the wrong damn button, and I lost it. So let me try this again:

Excellent. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Daycare can be ridiculously expensive, you're right. Rar.

As for other CF kids in daycare/school, etc, there's really no way for you to know. Not every CF parent is going to be 100% open about it, and the school can't legally tell you because of privacy laws. Just be sure to teach your kids common sense, hand-washing, don't share cups, etc.

If it makes you feel any better, when I was a kid, they didn't know about cross-contamination yet, and I was around CFers all the time. I was a poster child for the CFF Connecticut chapter, and all my little friends were CFers. I never caught anything nasty until I was 16 (and that was from working at a retirement home, hah!). I'm 23 now, and I still have 70% of my lung function, etc. And like I said, I was around CFers all the time when I was kid. I still see them if/when I want. I was a bridesmaid in a fellow CF girl's wedding last year. <img src="i/expressions/face-icon-small-smile.gif" border="0">

While there are obvious reasons they don't want you to swap spit with another CFer, I think they make it so HUGE to cover their asses more than anything else. As long as you teach your kids common sense, they'll be fine.

In all honesty, they're far more likely to pick something up at the hospital than from another CFer at daycare or school or on a bus, etc.

I think that covers everything in the first one... hah. Stupid computer.
 
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Emily65Roses

New member
Okay I am FULLY annoyed. I just had a really long response written and I hit the wrong damn button, and I lost it. So let me try this again:

Excellent. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Daycare can be ridiculously expensive, you're right. Rar.

As for other CF kids in daycare/school, etc, there's really no way for you to know. Not every CF parent is going to be 100% open about it, and the school can't legally tell you because of privacy laws. Just be sure to teach your kids common sense, hand-washing, don't share cups, etc.

If it makes you feel any better, when I was a kid, they didn't know about cross-contamination yet, and I was around CFers all the time. I was a poster child for the CFF Connecticut chapter, and all my little friends were CFers. I never caught anything nasty until I was 16 (and that was from working at a retirement home, hah!). I'm 23 now, and I still have 70% of my lung function, etc. And like I said, I was around CFers all the time when I was kid. I still see them if/when I want. I was a bridesmaid in a fellow CF girl's wedding last year. <img src="i/expressions/face-icon-small-smile.gif" border="0">

While there are obvious reasons they don't want you to swap spit with another CFer, I think they make it so HUGE to cover their asses more than anything else. As long as you teach your kids common sense, they'll be fine.

In all honesty, they're far more likely to pick something up at the hospital than from another CFer at daycare or school or on a bus, etc.

I think that covers everything in the first one... hah. Stupid computer.
 
E

Emily65Roses

New member
Okay I am FULLY annoyed. I just had a really long response written and I hit the wrong damn button, and I lost it. So let me try this again:

Excellent. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Daycare can be ridiculously expensive, you're right. Rar.

As for other CF kids in daycare/school, etc, there's really no way for you to know. Not every CF parent is going to be 100% open about it, and the school can't legally tell you because of privacy laws. Just be sure to teach your kids common sense, hand-washing, don't share cups, etc.

If it makes you feel any better, when I was a kid, they didn't know about cross-contamination yet, and I was around CFers all the time. I was a poster child for the CFF Connecticut chapter, and all my little friends were CFers. I never caught anything nasty until I was 16 (and that was from working at a retirement home, hah!). I'm 23 now, and I still have 70% of my lung function, etc. And like I said, I was around CFers all the time when I was kid. I still see them if/when I want. I was a bridesmaid in a fellow CF girl's wedding last year. <img src="i/expressions/face-icon-small-smile.gif" border="0">

While there are obvious reasons they don't want you to swap spit with another CFer, I think they make it so HUGE to cover their asses more than anything else. As long as you teach your kids common sense, they'll be fine.

In all honesty, they're far more likely to pick something up at the hospital than from another CFer at daycare or school or on a bus, etc.

I think that covers everything in the first one... hah. Stupid computer.
 
T

tammykrumrey

Guest
I guess I missed this one originally<img src="i/expressions/face-icon-small-smile.gif" border="0"> I agree with 100% of what Emily said.

Both of my girls have CF. Kayla was dx at 14 months (I was 5 months pregnant with Hannah at the time...but didn't do any testing unitl birth). She was dx at two weeks with a positive sweat test and then confirmed with genetic testing. At first it was overwhelming, I think because I really wasn't over the first punch before I was hit with the second one!

I really do nothing different than someone who has one CF child. I keep seperate binders with all medical records for each child. For the first four years after the dx I did CPT by hand on both girls, and that was really exhausting for me. Yes, I do have a husband, but he really wasn't much help in that area. Getting the Vest was such a great help! We used one machine, but two seperate vest for a few years and then last year we were able to get a second machine. I still sit with the girls during CPT. We watch TV or read books or play legos. Sometimes we sit on the floor and play games together. Our clinic would prefer they did treatments in seperate rooms, and I think that is recommended by the foundation, but it is just too hard to do while they are this young. They do not like to feel isolated in seperate rooms while doing their Vest, and I don't want to make them feel that way.

I would never want my girls to have CF. But having a sibling with the same issues really is different than one having CF and the others not. They understand what each other are dealing with. They urge the other one to do ALL their treatments. It is almost a contest sometimes between the two. Or they learn from the other's mistakes by not doing everything they are told to do as far as treatments go.

Both of my girls have cultured MRSA and staph. They have had those for years. Only one cultures PA so far. And one aspergillus. When they were little they used to be big 'binky babies' and were always taking each others binkies from one another. Sometimes I would catch them doing it while they slept and not even knowing they did it<img src="i/expressions/face-icon-small-smile.gif" border="0"> Yes, it is a cross contamination problem, but I don't know what I could had done besides never let them near each other. Now that they are older, they are more careful about not drinking after each other or sharing popcycles or stuff like they used to do when little.

My girls still sleep together even though they have their own rooms. They just can't sleep without the other one near. They are so close to one another, you would think they were twins. They are very aware of keeping a good distance from others with CF, but not each other.

I am rambling...sorry<img src="i/expressions/face-icon-small-smile.gif" border="0"> Any questions specifically, just let me know!

Congrats on baby number #2! Hannah is a September baby also<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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tammykrumrey

Guest
I guess I missed this one originally<img src="i/expressions/face-icon-small-smile.gif" border="0"> I agree with 100% of what Emily said.

Both of my girls have CF. Kayla was dx at 14 months (I was 5 months pregnant with Hannah at the time...but didn't do any testing unitl birth). She was dx at two weeks with a positive sweat test and then confirmed with genetic testing. At first it was overwhelming, I think because I really wasn't over the first punch before I was hit with the second one!

I really do nothing different than someone who has one CF child. I keep seperate binders with all medical records for each child. For the first four years after the dx I did CPT by hand on both girls, and that was really exhausting for me. Yes, I do have a husband, but he really wasn't much help in that area. Getting the Vest was such a great help! We used one machine, but two seperate vest for a few years and then last year we were able to get a second machine. I still sit with the girls during CPT. We watch TV or read books or play legos. Sometimes we sit on the floor and play games together. Our clinic would prefer they did treatments in seperate rooms, and I think that is recommended by the foundation, but it is just too hard to do while they are this young. They do not like to feel isolated in seperate rooms while doing their Vest, and I don't want to make them feel that way.

I would never want my girls to have CF. But having a sibling with the same issues really is different than one having CF and the others not. They understand what each other are dealing with. They urge the other one to do ALL their treatments. It is almost a contest sometimes between the two. Or they learn from the other's mistakes by not doing everything they are told to do as far as treatments go.

Both of my girls have cultured MRSA and staph. They have had those for years. Only one cultures PA so far. And one aspergillus. When they were little they used to be big 'binky babies' and were always taking each others binkies from one another. Sometimes I would catch them doing it while they slept and not even knowing they did it<img src="i/expressions/face-icon-small-smile.gif" border="0"> Yes, it is a cross contamination problem, but I don't know what I could had done besides never let them near each other. Now that they are older, they are more careful about not drinking after each other or sharing popcycles or stuff like they used to do when little.

My girls still sleep together even though they have their own rooms. They just can't sleep without the other one near. They are so close to one another, you would think they were twins. They are very aware of keeping a good distance from others with CF, but not each other.

I am rambling...sorry<img src="i/expressions/face-icon-small-smile.gif" border="0"> Any questions specifically, just let me know!

Congrats on baby number #2! Hannah is a September baby also<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
I guess I missed this one originally<img src="i/expressions/face-icon-small-smile.gif" border="0"> I agree with 100% of what Emily said.

Both of my girls have CF. Kayla was dx at 14 months (I was 5 months pregnant with Hannah at the time...but didn't do any testing unitl birth). She was dx at two weeks with a positive sweat test and then confirmed with genetic testing. At first it was overwhelming, I think because I really wasn't over the first punch before I was hit with the second one!

I really do nothing different than someone who has one CF child. I keep seperate binders with all medical records for each child. For the first four years after the dx I did CPT by hand on both girls, and that was really exhausting for me. Yes, I do have a husband, but he really wasn't much help in that area. Getting the Vest was such a great help! We used one machine, but two seperate vest for a few years and then last year we were able to get a second machine. I still sit with the girls during CPT. We watch TV or read books or play legos. Sometimes we sit on the floor and play games together. Our clinic would prefer they did treatments in seperate rooms, and I think that is recommended by the foundation, but it is just too hard to do while they are this young. They do not like to feel isolated in seperate rooms while doing their Vest, and I don't want to make them feel that way.

I would never want my girls to have CF. But having a sibling with the same issues really is different than one having CF and the others not. They understand what each other are dealing with. They urge the other one to do ALL their treatments. It is almost a contest sometimes between the two. Or they learn from the other's mistakes by not doing everything they are told to do as far as treatments go.

Both of my girls have cultured MRSA and staph. They have had those for years. Only one cultures PA so far. And one aspergillus. When they were little they used to be big 'binky babies' and were always taking each others binkies from one another. Sometimes I would catch them doing it while they slept and not even knowing they did it<img src="i/expressions/face-icon-small-smile.gif" border="0"> Yes, it is a cross contamination problem, but I don't know what I could had done besides never let them near each other. Now that they are older, they are more careful about not drinking after each other or sharing popcycles or stuff like they used to do when little.

My girls still sleep together even though they have their own rooms. They just can't sleep without the other one near. They are so close to one another, you would think they were twins. They are very aware of keeping a good distance from others with CF, but not each other.

I am rambling...sorry<img src="i/expressions/face-icon-small-smile.gif" border="0"> Any questions specifically, just let me know!

Congrats on baby number #2! Hannah is a September baby also<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Mommy2Alysa

New member
Thank you so much!

It's nice to hear that there are other families out there who had another child after having one with CF. I have been told by a few people that i am "crazy" and they cant understand why I would go through with the pregnancy. To me, the option was easy and I love this baby no less than if it was "normal and healthy"

I am sure that my girls, this one is a girl as well, will have the same competition with treatments as yours did and I am actually sort of looking forward to having another CFer. I mean sure, the hospital scares, doctor appts, and everything will be nerve-racking and very hard but having someone else for my girls to turn to (each other) and having someone understand them will be so good for them.

Neither my husband or I have CF and have no clue what they will have go through in life except what we can imagine. Before Alysa was dx at 18 months I had never even really heard of CF before.

Where do you get one of those vests from? They sound like such a great idea as trying to do her physio is practically impossible, I mean what 2 year old likes being held down and patted on for 20 mins 3times a day? LOL
 
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