What do I do?

just1more · Dec 3, 2009

First congrats on the twins. We have an 11mth old and can't imagine having two of him.

The purpose is the tub/sink is that water/soap scum/etc tend to harbor hold & other 'bugs' that are bad for cf'rs.

As to the being a kid, you have to let them live and explore. I would not let your son chew on a toy at the peds office, but at home you have to balance.

While there is risk, there is inherent risk in just living so the best option is to be proactive in treatment, follow the basic guidelines and direction of your doctors and IMHO read and education yourself on everything CF related so you can make more informed decisions as life progresses.

just1more · Dec 3, 2009

First congrats on the twins. We have an 11mth old and can't imagine having two of him.

The purpose is the tub/sink is that water/soap scum/etc tend to harbor hold & other 'bugs' that are bad for cf'rs.

As to the being a kid, you have to let them live and explore. I would not let your son chew on a toy at the peds office, but at home you have to balance.

While there is risk, there is inherent risk in just living so the best option is to be proactive in treatment, follow the basic guidelines and direction of your doctors and IMHO read and education yourself on everything CF related so you can make more informed decisions as life progresses.

just1more · Dec 3, 2009

First congrats on the twins. We have an 11mth old and can't imagine having two of him.

The purpose is the tub/sink is that water/soap scum/etc tend to harbor hold & other 'bugs' that are bad for cf'rs.

As to the being a kid, you have to let them live and explore. I would not let your son chew on a toy at the peds office, but at home you have to balance.

While there is risk, there is inherent risk in just living so the best option is to be proactive in treatment, follow the basic guidelines and direction of your doctors and IMHO read and education yourself on everything CF related so you can make more informed decisions as life progresses.

just1more · Dec 3, 2009

First congrats on the twins. We have an 11mth old and can't imagine having two of him.

The purpose is the tub/sink is that water/soap scum/etc tend to harbor hold & other 'bugs' that are bad for cf'rs.

As to the being a kid, you have to let them live and explore. I would not let your son chew on a toy at the peds office, but at home you have to balance.

While there is risk, there is inherent risk in just living so the best option is to be proactive in treatment, follow the basic guidelines and direction of your doctors and IMHO read and education yourself on everything CF related so you can make more informed decisions as life progresses.

just1more · Dec 3, 2009

First congrats on the twins. We have an 11mth old and can't imagine having two of him.
 
 The purpose is the tub/sink is that water/soap scum/etc tend to harbor hold & other 'bugs' that are bad for cf'rs.
 
 As to the being a kid, you have to let them live and explore. I would not let your son chew on a toy at the peds office, but at home you have to balance.
 
 While there is risk, there is inherent risk in just living so the best option is to be proactive in treatment, follow the basic guidelines and direction of your doctors and IMHO read and education yourself on everything CF related so you can make more informed decisions as life progresses.

twinluv29 · Dec 15, 2009

Hi Robin,

I'm a mom of 5 1/2 month old twin boys. One of my boys has exhibited symptoms of CF, while my other has not. Having one baby is difficult, having twins who are healthy is a tremendous challenge, but having twins and dealing with CF is a herculean undertaking. I know it's hard and I know that there are days that seem to just whiz by because you literally have your hands full. When the going gets tough, just know that your best is good enough.

Just like you, my husband and I were very concerned about whether our pets would create a problem for our son (we have a cat and a bulldog -- who both shed like crazy). Our doctor told us that having pets doesn't necessarily pose a problem to a child with CF. It all depends on whether the child has allergies and if those allergies are related to our dog and/or cat. He clarified that if our child develops allergies to our pets, then there could be a problem; but if he does not, then the pets should not pose a problem.

With regard to keeping a clean house...oh boy, with twins it is tough! We just try and keep trying. As the boys have grown older and able to sleep for longer periods of time, we've been able to do more and more chores/cleaning in increments. There are days when we're able to clean and there are days when there simply isn't enough time and/or we simply have no more energy. We just try again the next day. We're far from having a spotless home, but so far the kids have been fine. We definitely use a lot of hand sanitizers and wipe our surfaces with disinfectant wipes to kill germs.

We've kept our boys out of large parties, crowds, malls, etc. to give them the best shot to make it through this flu season. We do look forward to spending time with family on Christmas, but will be mindful if any relatives/friends are sick and steer clear of letting the babies actively interact with those individuals. I'm sorry to hear about your son having CF. You're welcome to send me a message directly if you want to chat further. Take care and good luck!

twinluv29 · Dec 15, 2009

Hi Robin,

I'm a mom of 5 1/2 month old twin boys. One of my boys has exhibited symptoms of CF, while my other has not. Having one baby is difficult, having twins who are healthy is a tremendous challenge, but having twins and dealing with CF is a herculean undertaking. I know it's hard and I know that there are days that seem to just whiz by because you literally have your hands full. When the going gets tough, just know that your best is good enough.

Just like you, my husband and I were very concerned about whether our pets would create a problem for our son (we have a cat and a bulldog -- who both shed like crazy). Our doctor told us that having pets doesn't necessarily pose a problem to a child with CF. It all depends on whether the child has allergies and if those allergies are related to our dog and/or cat. He clarified that if our child develops allergies to our pets, then there could be a problem; but if he does not, then the pets should not pose a problem.

With regard to keeping a clean house...oh boy, with twins it is tough! We just try and keep trying. As the boys have grown older and able to sleep for longer periods of time, we've been able to do more and more chores/cleaning in increments. There are days when we're able to clean and there are days when there simply isn't enough time and/or we simply have no more energy. We just try again the next day. We're far from having a spotless home, but so far the kids have been fine. We definitely use a lot of hand sanitizers and wipe our surfaces with disinfectant wipes to kill germs.

We've kept our boys out of large parties, crowds, malls, etc. to give them the best shot to make it through this flu season. We do look forward to spending time with family on Christmas, but will be mindful if any relatives/friends are sick and steer clear of letting the babies actively interact with those individuals. I'm sorry to hear about your son having CF. You're welcome to send me a message directly if you want to chat further. Take care and good luck!

twinluv29 · Dec 15, 2009

Hi Robin,

I'm a mom of 5 1/2 month old twin boys. One of my boys has exhibited symptoms of CF, while my other has not. Having one baby is difficult, having twins who are healthy is a tremendous challenge, but having twins and dealing with CF is a herculean undertaking. I know it's hard and I know that there are days that seem to just whiz by because you literally have your hands full. When the going gets tough, just know that your best is good enough.

Just like you, my husband and I were very concerned about whether our pets would create a problem for our son (we have a cat and a bulldog -- who both shed like crazy). Our doctor told us that having pets doesn't necessarily pose a problem to a child with CF. It all depends on whether the child has allergies and if those allergies are related to our dog and/or cat. He clarified that if our child develops allergies to our pets, then there could be a problem; but if he does not, then the pets should not pose a problem.

With regard to keeping a clean house...oh boy, with twins it is tough! We just try and keep trying. As the boys have grown older and able to sleep for longer periods of time, we've been able to do more and more chores/cleaning in increments. There are days when we're able to clean and there are days when there simply isn't enough time and/or we simply have no more energy. We just try again the next day. We're far from having a spotless home, but so far the kids have been fine. We definitely use a lot of hand sanitizers and wipe our surfaces with disinfectant wipes to kill germs.

We've kept our boys out of large parties, crowds, malls, etc. to give them the best shot to make it through this flu season. We do look forward to spending time with family on Christmas, but will be mindful if any relatives/friends are sick and steer clear of letting the babies actively interact with those individuals. I'm sorry to hear about your son having CF. You're welcome to send me a message directly if you want to chat further. Take care and good luck!

twinluv29 · Dec 15, 2009

Hi Robin,

I'm a mom of 5 1/2 month old twin boys. One of my boys has exhibited symptoms of CF, while my other has not. Having one baby is difficult, having twins who are healthy is a tremendous challenge, but having twins and dealing with CF is a herculean undertaking. I know it's hard and I know that there are days that seem to just whiz by because you literally have your hands full. When the going gets tough, just know that your best is good enough.

Just like you, my husband and I were very concerned about whether our pets would create a problem for our son (we have a cat and a bulldog -- who both shed like crazy). Our doctor told us that having pets doesn't necessarily pose a problem to a child with CF. It all depends on whether the child has allergies and if those allergies are related to our dog and/or cat. He clarified that if our child develops allergies to our pets, then there could be a problem; but if he does not, then the pets should not pose a problem.

With regard to keeping a clean house...oh boy, with twins it is tough! We just try and keep trying. As the boys have grown older and able to sleep for longer periods of time, we've been able to do more and more chores/cleaning in increments. There are days when we're able to clean and there are days when there simply isn't enough time and/or we simply have no more energy. We just try again the next day. We're far from having a spotless home, but so far the kids have been fine. We definitely use a lot of hand sanitizers and wipe our surfaces with disinfectant wipes to kill germs.

We've kept our boys out of large parties, crowds, malls, etc. to give them the best shot to make it through this flu season. We do look forward to spending time with family on Christmas, but will be mindful if any relatives/friends are sick and steer clear of letting the babies actively interact with those individuals. I'm sorry to hear about your son having CF. You're welcome to send me a message directly if you want to chat further. Take care and good luck!

twinluv29 · Dec 15, 2009

Hi Robin,
 
 I'm a mom of 5 1/2 month old twin boys. One of my boys has exhibited symptoms of CF, while my other has not. Having one baby is difficult, having twins who are healthy is a tremendous challenge, but having twins and dealing with CF is a herculean undertaking. I know it's hard and I know that there are days that seem to just whiz by because you literally have your hands full. When the going gets tough, just know that your best is good enough.
 
 Just like you, my husband and I were very concerned about whether our pets would create a problem for our son (we have a cat and a bulldog -- who both shed like crazy). Our doctor told us that having pets doesn't necessarily pose a problem to a child with CF. It all depends on whether the child has allergies and if those allergies are related to our dog and/or cat. He clarified that if our child develops allergies to our pets, then there could be a problem; but if he does not, then the pets should not pose a problem.
 
 With regard to keeping a clean house...oh boy, with twins it is tough! We just try and keep trying. As the boys have grown older and able to sleep for longer periods of time, we've been able to do more and more chores/cleaning in increments. There are days when we're able to clean and there are days when there simply isn't enough time and/or we simply have no more energy. We just try again the next day. We're far from having a spotless home, but so far the kids have been fine. We definitely use a lot of hand sanitizers and wipe our surfaces with disinfectant wipes to kill germs.
 
 We've kept our boys out of large parties, crowds, malls, etc. to give them the best shot to make it through this flu season. We do look forward to spending time with family on Christmas, but will be mindful if any relatives/friends are sick and steer clear of letting the babies actively interact with those individuals. I'm sorry to hear about your son having CF. You're welcome to send me a message directly if you want to chat further. Take care and good luck!

NancyLKF · Dec 24, 2009

Hi Robin. While I don't have twins I do have an 11 month old and she is into everything. In the begining, anytime a toy touched the floor it had to be washed before we gave it back to her. When she started to crawl we "boxed" her in a blanketed area. NOW... there is no stopping her and she has yet to get sick. We have two cats and there is constantly cat hair all over so we dust and vaccumm as often as possible (with her in another room 'cause we are paranoid still about stirring up the dust). but she LOVES the cats and luckily our CF doctor said to keep them (unless she were to end up allergic).
I do have a rule that the sink must be cleaned every night. I'm trying to do the same with the bathroom but that is harder to keep up with. It is getting easier now that she's older and takes an hour nap twice a day and can entertain herself in her pack n play.
There are two families in my area that have twins (one with CF and one without). I could contact them if you want (I don't think they are on this forum) and see if they'd be willing to email you or talk back and forth. Private message me and let me know.

Good luck, and happy holidays.

NancyLKF · Dec 24, 2009

Hi Robin. While I don't have twins I do have an 11 month old and she is into everything. In the begining, anytime a toy touched the floor it had to be washed before we gave it back to her. When she started to crawl we "boxed" her in a blanketed area. NOW... there is no stopping her and she has yet to get sick. We have two cats and there is constantly cat hair all over so we dust and vaccumm as often as possible (with her in another room 'cause we are paranoid still about stirring up the dust). but she LOVES the cats and luckily our CF doctor said to keep them (unless she were to end up allergic).
I do have a rule that the sink must be cleaned every night. I'm trying to do the same with the bathroom but that is harder to keep up with. It is getting easier now that she's older and takes an hour nap twice a day and can entertain herself in her pack n play.
There are two families in my area that have twins (one with CF and one without). I could contact them if you want (I don't think they are on this forum) and see if they'd be willing to email you or talk back and forth. Private message me and let me know.

Good luck, and happy holidays.

NancyLKF · Dec 24, 2009

Hi Robin. While I don't have twins I do have an 11 month old and she is into everything. In the begining, anytime a toy touched the floor it had to be washed before we gave it back to her. When she started to crawl we "boxed" her in a blanketed area. NOW... there is no stopping her and she has yet to get sick. We have two cats and there is constantly cat hair all over so we dust and vaccumm as often as possible (with her in another room 'cause we are paranoid still about stirring up the dust). but she LOVES the cats and luckily our CF doctor said to keep them (unless she were to end up allergic).
I do have a rule that the sink must be cleaned every night. I'm trying to do the same with the bathroom but that is harder to keep up with. It is getting easier now that she's older and takes an hour nap twice a day and can entertain herself in her pack n play.
There are two families in my area that have twins (one with CF and one without). I could contact them if you want (I don't think they are on this forum) and see if they'd be willing to email you or talk back and forth. Private message me and let me know.

Good luck, and happy holidays.

NancyLKF · Dec 24, 2009

Hi Robin. While I don't have twins I do have an 11 month old and she is into everything. In the begining, anytime a toy touched the floor it had to be washed before we gave it back to her. When she started to crawl we "boxed" her in a blanketed area. NOW... there is no stopping her and she has yet to get sick. We have two cats and there is constantly cat hair all over so we dust and vaccumm as often as possible (with her in another room 'cause we are paranoid still about stirring up the dust). but she LOVES the cats and luckily our CF doctor said to keep them (unless she were to end up allergic).
I do have a rule that the sink must be cleaned every night. I'm trying to do the same with the bathroom but that is harder to keep up with. It is getting easier now that she's older and takes an hour nap twice a day and can entertain herself in her pack n play.
There are two families in my area that have twins (one with CF and one without). I could contact them if you want (I don't think they are on this forum) and see if they'd be willing to email you or talk back and forth. Private message me and let me know.

Good luck, and happy holidays.

NancyLKF · Dec 24, 2009

Hi Robin. While I don't have twins I do have an 11 month old and she is into everything. In the begining, anytime a toy touched the floor it had to be washed before we gave it back to her. When she started to crawl we "boxed" her in a blanketed area. NOW... there is no stopping her and she has yet to get sick. We have two cats and there is constantly cat hair all over so we dust and vaccumm as often as possible (with her in another room 'cause we are paranoid still about stirring up the dust). but she LOVES the cats and luckily our CF doctor said to keep them (unless she were to end up allergic).
 I do have a rule that the sink must be cleaned every night. I'm trying to do the same with the bathroom but that is harder to keep up with. It is getting easier now that she's older and takes an hour nap twice a day and can entertain herself in her pack n play.
 There are two families in my area that have twins (one with CF and one without). I could contact them if you want (I don't think they are on this forum) and see if they'd be willing to email you or talk back and forth. Private message me and let me know.
 
 Good luck, and happy holidays.

KCarroll · Jan 3, 2010

Hi Robin!

I can absolutely relate to the overwhelming feelings you are having! My husband and I have had the same feelings and continue to experience them daily! We also have twins (9 months on January 17th) Our daughter, Kadyn was diagnosed with CF at birth. Her brother Koy does not have CF. We are constantly saying that we will always treat them the same, but let's be honest that really cannot be that case! First, I must say that is OUR job to keep our children safe and healthy. Kadyn was in the hospital for the first 3 months of her life. She cultures chronic pseudomonas and is on albuteral (2x/day), pulmozyme (1x/day), and TOBI 2x/day (28 day cycle). CPT (2x/day or more when needed) She is also taking enzymes. We had a very very shaky start, but Kadyn has been doing very well. Because of the start we had we have been OBSESSIVE about cleaning, boiling, bleaching, sanitizing EVERYTHING. Everyone who is in contact with Kadyn (not many people other than family) must use hand sanitizer EVERY time they touch her. We even use sanitizer when we go from Koy to Kadyn just to be safe. We use Clorox hard surface cleaner on EVERYTHING! We wash toys (daily) in the washing machine if they cannot be washed in the sink. We use Dawn (with Bleach) for bottles, nipples, etc. We also sterilize everything (either boiling or in a sterilizer). My husband swears that bleach and vinegar are the only cleaners that will get things "clean enough". I know it sounds crazy but like I said it is our job to keep them safe and healthy. We have found that CF is a very high maintenance disease but it is manageable!

I'm so glad to hear your little one has been doing so well!!!

KCarroll · Jan 3, 2010

Hi Robin!

I can absolutely relate to the overwhelming feelings you are having! My husband and I have had the same feelings and continue to experience them daily! We also have twins (9 months on January 17th) Our daughter, Kadyn was diagnosed with CF at birth. Her brother Koy does not have CF. We are constantly saying that we will always treat them the same, but let's be honest that really cannot be that case! First, I must say that is OUR job to keep our children safe and healthy. Kadyn was in the hospital for the first 3 months of her life. She cultures chronic pseudomonas and is on albuteral (2x/day), pulmozyme (1x/day), and TOBI 2x/day (28 day cycle). CPT (2x/day or more when needed) She is also taking enzymes. We had a very very shaky start, but Kadyn has been doing very well. Because of the start we had we have been OBSESSIVE about cleaning, boiling, bleaching, sanitizing EVERYTHING. Everyone who is in contact with Kadyn (not many people other than family) must use hand sanitizer EVERY time they touch her. We even use sanitizer when we go from Koy to Kadyn just to be safe. We use Clorox hard surface cleaner on EVERYTHING! We wash toys (daily) in the washing machine if they cannot be washed in the sink. We use Dawn (with Bleach) for bottles, nipples, etc. We also sterilize everything (either boiling or in a sterilizer). My husband swears that bleach and vinegar are the only cleaners that will get things "clean enough". I know it sounds crazy but like I said it is our job to keep them safe and healthy. We have found that CF is a very high maintenance disease but it is manageable!

I'm so glad to hear your little one has been doing so well!!!

KCarroll · Jan 3, 2010

Hi Robin!

I can absolutely relate to the overwhelming feelings you are having! My husband and I have had the same feelings and continue to experience them daily! We also have twins (9 months on January 17th) Our daughter, Kadyn was diagnosed with CF at birth. Her brother Koy does not have CF. We are constantly saying that we will always treat them the same, but let's be honest that really cannot be that case! First, I must say that is OUR job to keep our children safe and healthy. Kadyn was in the hospital for the first 3 months of her life. She cultures chronic pseudomonas and is on albuteral (2x/day), pulmozyme (1x/day), and TOBI 2x/day (28 day cycle). CPT (2x/day or more when needed) She is also taking enzymes. We had a very very shaky start, but Kadyn has been doing very well. Because of the start we had we have been OBSESSIVE about cleaning, boiling, bleaching, sanitizing EVERYTHING. Everyone who is in contact with Kadyn (not many people other than family) must use hand sanitizer EVERY time they touch her. We even use sanitizer when we go from Koy to Kadyn just to be safe. We use Clorox hard surface cleaner on EVERYTHING! We wash toys (daily) in the washing machine if they cannot be washed in the sink. We use Dawn (with Bleach) for bottles, nipples, etc. We also sterilize everything (either boiling or in a sterilizer). My husband swears that bleach and vinegar are the only cleaners that will get things "clean enough". I know it sounds crazy but like I said it is our job to keep them safe and healthy. We have found that CF is a very high maintenance disease but it is manageable!

I'm so glad to hear your little one has been doing so well!!!

KCarroll · Jan 3, 2010

Hi Robin!

I can absolutely relate to the overwhelming feelings you are having! My husband and I have had the same feelings and continue to experience them daily! We also have twins (9 months on January 17th) Our daughter, Kadyn was diagnosed with CF at birth. Her brother Koy does not have CF. We are constantly saying that we will always treat them the same, but let's be honest that really cannot be that case! First, I must say that is OUR job to keep our children safe and healthy. Kadyn was in the hospital for the first 3 months of her life. She cultures chronic pseudomonas and is on albuteral (2x/day), pulmozyme (1x/day), and TOBI 2x/day (28 day cycle). CPT (2x/day or more when needed) She is also taking enzymes. We had a very very shaky start, but Kadyn has been doing very well. Because of the start we had we have been OBSESSIVE about cleaning, boiling, bleaching, sanitizing EVERYTHING. Everyone who is in contact with Kadyn (not many people other than family) must use hand sanitizer EVERY time they touch her. We even use sanitizer when we go from Koy to Kadyn just to be safe. We use Clorox hard surface cleaner on EVERYTHING! We wash toys (daily) in the washing machine if they cannot be washed in the sink. We use Dawn (with Bleach) for bottles, nipples, etc. We also sterilize everything (either boiling or in a sterilizer). My husband swears that bleach and vinegar are the only cleaners that will get things "clean enough". I know it sounds crazy but like I said it is our job to keep them safe and healthy. We have found that CF is a very high maintenance disease but it is manageable!

I'm so glad to hear your little one has been doing so well!!!

KCarroll · Jan 3, 2010

Hi Robin!
 
 I can absolutely relate to the overwhelming feelings you are having! My husband and I have had the same feelings and continue to experience them daily! We also have twins (9 months on January 17th) Our daughter, Kadyn was diagnosed with CF at birth. Her brother Koy does not have CF. We are constantly saying that we will always treat them the same, but let's be honest that really cannot be that case! First, I must say that is OUR job to keep our children safe and healthy. Kadyn was in the hospital for the first 3 months of her life. She cultures chronic pseudomonas and is on albuteral (2x/day), pulmozyme (1x/day), and TOBI 2x/day (28 day cycle). CPT (2x/day or more when needed) She is also taking enzymes. We had a very very shaky start, but Kadyn has been doing very well. Because of the start we had we have been OBSESSIVE about cleaning, boiling, bleaching, sanitizing EVERYTHING. Everyone who is in contact with Kadyn (not many people other than family) must use hand sanitizer EVERY time they touch her. We even use sanitizer when we go from Koy to Kadyn just to be safe. We use Clorox hard surface cleaner on EVERYTHING! We wash toys (daily) in the washing machine if they cannot be washed in the sink. We use Dawn (with Bleach) for bottles, nipples, etc. We also sterilize everything (either boiling or in a sterilizer). My husband swears that bleach and vinegar are the only cleaners that will get things "clean enough". I know it sounds crazy but like I said it is our job to keep them safe and healthy. We have found that CF is a very high maintenance disease but it is manageable!
 
 I'm so glad to hear your little one has been doing so well!!!

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