Hi, I am new to this forum and new to CF and new to the USA (been here only 5 months)! Our darling little boy was diagnosed 7 weeks ago, he is now 9 weeks and so far so good! We also have an almost three year old who does not have CF - although the doctors think he should be tested, even though he did have newborn screening at birth which was negative. We are remaining very positive, albeit moments of confusion and sadness, but we are very committed to his care and leading a very normal life enjoying everything we have done with our first son. He has double 508 mutation and is pancreatic insufficient - but the enzymes are working really well and he is putting on weight. No lung problems thus far, although i think he sounds rather rattly but doctors assure me he is okay. At the moment we do nuebulizer with abuterol once a day and cupping following this treatment. I have read that alot of people do this twice a day as a preventative - I asked my care centre and they said if I want i can do up to four times a day, but it is finding the time - I am a little confused - I want to give him the best care - what do you all do? I just don't know whether I am being told the right information - the doctor doesn't even see us, we only see the nurse and dietician. They assured me that the doctor overlooks everything and will notify us if she feels she needs to - I think this is strange and doesn't give me much confidence! Also, any advice on the best type of insurance to have? We are currently with a PPO provider and have been told that this will become very expensive - especially when he has to take TOBI and Pulmozone (when will he have to start this? - the clinic said not to worry about it at the moment)! Is HMO insurance better? We do not qualify for any state assistance and as we are new to the USA I am finding it very difficult to navigate the insurance system here.. and now I am totally freaked about how we will afford everything - how do you all manage? And one more thing - the clinic have said don't live in a bubble and lead your life as you normally would, but I am a little scared to venture out as I don't want to be infected.. but with the three year old this is getting difficult to stay home.. we are so use to being active.. we are all getting cabin fever... do you all go out and do normal things like malls, cafes, playgroups etc? I have read so many of your posts and you are all very inspirational and you have already given me so much information to digest and so much hope... thanks xx
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So much to learn... help
- Thread starter bet10
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Hi, I am new to this forum and new to CF and new to the USA (been here only 5 months)! Our darling little boy was diagnosed 7 weeks ago, he is now 9 weeks and so far so good! We also have an almost three year old who does not have CF - although the doctors think he should be tested, even though he did have newborn screening at birth which was negative. We are remaining very positive, albeit moments of confusion and sadness, but we are very committed to his care and leading a very normal life enjoying everything we have done with our first son. He has double 508 mutation and is pancreatic insufficient - but the enzymes are working really well and he is putting on weight. No lung problems thus far, although i think he sounds rather rattly but doctors assure me he is okay. At the moment we do nuebulizer with abuterol once a day and cupping following this treatment. I have read that alot of people do this twice a day as a preventative - I asked my care centre and they said if I want i can do up to four times a day, but it is finding the time - I am a little confused - I want to give him the best care - what do you all do? I just don't know whether I am being told the right information - the doctor doesn't even see us, we only see the nurse and dietician. They assured me that the doctor overlooks everything and will notify us if she feels she needs to - I think this is strange and doesn't give me much confidence! Also, any advice on the best type of insurance to have? We are currently with a PPO provider and have been told that this will become very expensive - especially when he has to take TOBI and Pulmozone (when will he have to start this? - the clinic said not to worry about it at the moment)! Is HMO insurance better? We do not qualify for any state assistance and as we are new to the USA I am finding it very difficult to navigate the insurance system here.. and now I am totally freaked about how we will afford everything - how do you all manage? And one more thing - the clinic have said don't live in a bubble and lead your life as you normally would, but I am a little scared to venture out as I don't want to be infected.. but with the three year old this is getting difficult to stay home.. we are so use to being active.. we are all getting cabin fever... do you all go out and do normal things like malls, cafes, playgroups etc? I have read so many of your posts and you are all very inspirational and you have already given me so much information to digest and so much hope... thanks xx
Hi, I am new to this forum and new to CF and new to the USA (been here only 5 months)! Our darling little boy was diagnosed 7 weeks ago, he is now 9 weeks and so far so good! We also have an almost three year old who does not have CF - although the doctors think he should be tested, even though he did have newborn screening at birth which was negative. We are remaining very positive, albeit moments of confusion and sadness, but we are very committed to his care and leading a very normal life enjoying everything we have done with our first son. He has double 508 mutation and is pancreatic insufficient - but the enzymes are working really well and he is putting on weight. No lung problems thus far, although i think he sounds rather rattly but doctors assure me he is okay. At the moment we do nuebulizer with abuterol once a day and cupping following this treatment. I have read that alot of people do this twice a day as a preventative - I asked my care centre and they said if I want i can do up to four times a day, but it is finding the time - I am a little confused - I want to give him the best care - what do you all do? I just don't know whether I am being told the right information - the doctor doesn't even see us, we only see the nurse and dietician. They assured me that the doctor overlooks everything and will notify us if she feels she needs to - I think this is strange and doesn't give me much confidence! Also, any advice on the best type of insurance to have? We are currently with a PPO provider and have been told that this will become very expensive - especially when he has to take TOBI and Pulmozone (when will he have to start this? - the clinic said not to worry about it at the moment)! Is HMO insurance better? We do not qualify for any state assistance and as we are new to the USA I am finding it very difficult to navigate the insurance system here.. and now I am totally freaked about how we will afford everything - how do you all manage? And one more thing - the clinic have said don't live in a bubble and lead your life as you normally would, but I am a little scared to venture out as I don't want to be infected.. but with the three year old this is getting difficult to stay home.. we are so use to being active.. we are all getting cabin fever... do you all go out and do normal things like malls, cafes, playgroups etc? I have read so many of your posts and you are all very inspirational and you have already given me so much information to digest and so much hope... thanks xx
Hi, I am new to this forum and new to CF and new to the USA (been here only 5 months)! Our darling little boy was diagnosed 7 weeks ago, he is now 9 weeks and so far so good! We also have an almost three year old who does not have CF - although the doctors think he should be tested, even though he did have newborn screening at birth which was negative. We are remaining very positive, albeit moments of confusion and sadness, but we are very committed to his care and leading a very normal life enjoying everything we have done with our first son. He has double 508 mutation and is pancreatic insufficient - but the enzymes are working really well and he is putting on weight. No lung problems thus far, although i think he sounds rather rattly but doctors assure me he is okay. At the moment we do nuebulizer with abuterol once a day and cupping following this treatment. I have read that alot of people do this twice a day as a preventative - I asked my care centre and they said if I want i can do up to four times a day, but it is finding the time - I am a little confused - I want to give him the best care - what do you all do? I just don't know whether I am being told the right information - the doctor doesn't even see us, we only see the nurse and dietician. They assured me that the doctor overlooks everything and will notify us if she feels she needs to - I think this is strange and doesn't give me much confidence! Also, any advice on the best type of insurance to have? We are currently with a PPO provider and have been told that this will become very expensive - especially when he has to take TOBI and Pulmozone (when will he have to start this? - the clinic said not to worry about it at the moment)! Is HMO insurance better? We do not qualify for any state assistance and as we are new to the USA I am finding it very difficult to navigate the insurance system here.. and now I am totally freaked about how we will afford everything - how do you all manage? And one more thing - the clinic have said don't live in a bubble and lead your life as you normally would, but I am a little scared to venture out as I don't want to be infected.. but with the three year old this is getting difficult to stay home.. we are so use to being active.. we are all getting cabin fever... do you all go out and do normal things like malls, cafes, playgroups etc? I have read so many of your posts and you are all very inspirational and you have already given me so much information to digest and so much hope... thanks xx
Hi, I am new to this forum and new to CF and new to the USA (been here only 5 months)! Our darling little boy was diagnosed 7 weeks ago, he is now 9 weeks and so far so good! We also have an almost three year old who does not have CF - although the doctors think he should be tested, even though he did have newborn screening at birth which was negative. We are remaining very positive, albeit moments of confusion and sadness, but we are very committed to his care and leading a very normal life enjoying everything we have done with our first son. He has double 508 mutation and is pancreatic insufficient - but the enzymes are working really well and he is putting on weight. No lung problems thus far, although i think he sounds rather rattly but doctors assure me he is okay. At the moment we do nuebulizer with abuterol once a day and cupping following this treatment. I have read that alot of people do this twice a day as a preventative - I asked my care centre and they said if I want i can do up to four times a day, but it is finding the time - I am a little confused - I want to give him the best care - what do you all do? I just don't know whether I am being told the right information - the doctor doesn't even see us, we only see the nurse and dietician. They assured me that the doctor overlooks everything and will notify us if she feels she needs to - I think this is strange and doesn't give me much confidence! Also, any advice on the best type of insurance to have? We are currently with a PPO provider and have been told that this will become very expensive - especially when he has to take TOBI and Pulmozone (when will he have to start this? - the clinic said not to worry about it at the moment)! Is HMO insurance better? We do not qualify for any state assistance and as we are new to the USA I am finding it very difficult to navigate the insurance system here.. and now I am totally freaked about how we will afford everything - how do you all manage? And one more thing - the clinic have said don't live in a bubble and lead your life as you normally would, but I am a little scared to venture out as I don't want to be infected.. but with the three year old this is getting difficult to stay home.. we are so use to being active.. we are all getting cabin fever... do you all go out and do normal things like malls, cafes, playgroups etc? I have read so many of your posts and you are all very inspirational and you have already given me so much information to digest and so much hope... thanks xx
JosephinesMommy
New member
HI! Welcome!
My daughter is almost 9m old now and doing pretty well. She also has the DF508 mutations and is pancreatic insufficient. If you have any questions I may be able to help, though I don't come on here too often.
To answer a few questions. Our daughter was born late October and was in the hospital until mid November. We visted some family, never if they were sick or had been near any sick people. Made sure everyone washed their hands before holding her, etc. I carry Purell all the time and wipe everything down. We stayed in for the majority of the winter, and few excursions here and there, but with all the DR appts and such we really didn't have that much time. I stayed home until she was 7m and then I started back part time. She is NOT in day care and has only had contact with two children, both who also are NOT in daycare. We have been incredibly blessed with no sickness thus far (knock on wood, praise God!) Additionally I feel that my ability, and frankly stubborness and perserverance, was able to breastfeed my daughter exclusively until 7m helped her to stay healthy during the winter months.
Also, I have cried A LOT. I still do every once and awhile, but I have gotten much better. My daughter is such an incredible happy little soul and has made me such a happy person. Enjoy your baby. My thoughts are that I want her to LIVE not just be alive....
Good luck and God bless!
Sara
My daughter is almost 9m old now and doing pretty well. She also has the DF508 mutations and is pancreatic insufficient. If you have any questions I may be able to help, though I don't come on here too often.
To answer a few questions. Our daughter was born late October and was in the hospital until mid November. We visted some family, never if they were sick or had been near any sick people. Made sure everyone washed their hands before holding her, etc. I carry Purell all the time and wipe everything down. We stayed in for the majority of the winter, and few excursions here and there, but with all the DR appts and such we really didn't have that much time. I stayed home until she was 7m and then I started back part time. She is NOT in day care and has only had contact with two children, both who also are NOT in daycare. We have been incredibly blessed with no sickness thus far (knock on wood, praise God!) Additionally I feel that my ability, and frankly stubborness and perserverance, was able to breastfeed my daughter exclusively until 7m helped her to stay healthy during the winter months.
Also, I have cried A LOT. I still do every once and awhile, but I have gotten much better. My daughter is such an incredible happy little soul and has made me such a happy person. Enjoy your baby. My thoughts are that I want her to LIVE not just be alive....
Good luck and God bless!
Sara
JosephinesMommy
New member
HI! Welcome!
My daughter is almost 9m old now and doing pretty well. She also has the DF508 mutations and is pancreatic insufficient. If you have any questions I may be able to help, though I don't come on here too often.
To answer a few questions. Our daughter was born late October and was in the hospital until mid November. We visted some family, never if they were sick or had been near any sick people. Made sure everyone washed their hands before holding her, etc. I carry Purell all the time and wipe everything down. We stayed in for the majority of the winter, and few excursions here and there, but with all the DR appts and such we really didn't have that much time. I stayed home until she was 7m and then I started back part time. She is NOT in day care and has only had contact with two children, both who also are NOT in daycare. We have been incredibly blessed with no sickness thus far (knock on wood, praise God!) Additionally I feel that my ability, and frankly stubborness and perserverance, was able to breastfeed my daughter exclusively until 7m helped her to stay healthy during the winter months.
Also, I have cried A LOT. I still do every once and awhile, but I have gotten much better. My daughter is such an incredible happy little soul and has made me such a happy person. Enjoy your baby. My thoughts are that I want her to LIVE not just be alive....
Good luck and God bless!
Sara
My daughter is almost 9m old now and doing pretty well. She also has the DF508 mutations and is pancreatic insufficient. If you have any questions I may be able to help, though I don't come on here too often.
To answer a few questions. Our daughter was born late October and was in the hospital until mid November. We visted some family, never if they were sick or had been near any sick people. Made sure everyone washed their hands before holding her, etc. I carry Purell all the time and wipe everything down. We stayed in for the majority of the winter, and few excursions here and there, but with all the DR appts and such we really didn't have that much time. I stayed home until she was 7m and then I started back part time. She is NOT in day care and has only had contact with two children, both who also are NOT in daycare. We have been incredibly blessed with no sickness thus far (knock on wood, praise God!) Additionally I feel that my ability, and frankly stubborness and perserverance, was able to breastfeed my daughter exclusively until 7m helped her to stay healthy during the winter months.
Also, I have cried A LOT. I still do every once and awhile, but I have gotten much better. My daughter is such an incredible happy little soul and has made me such a happy person. Enjoy your baby. My thoughts are that I want her to LIVE not just be alive....
Good luck and God bless!
Sara
JosephinesMommy
New member
HI! Welcome!
My daughter is almost 9m old now and doing pretty well. She also has the DF508 mutations and is pancreatic insufficient. If you have any questions I may be able to help, though I don't come on here too often.
To answer a few questions. Our daughter was born late October and was in the hospital until mid November. We visted some family, never if they were sick or had been near any sick people. Made sure everyone washed their hands before holding her, etc. I carry Purell all the time and wipe everything down. We stayed in for the majority of the winter, and few excursions here and there, but with all the DR appts and such we really didn't have that much time. I stayed home until she was 7m and then I started back part time. She is NOT in day care and has only had contact with two children, both who also are NOT in daycare. We have been incredibly blessed with no sickness thus far (knock on wood, praise God!) Additionally I feel that my ability, and frankly stubborness and perserverance, was able to breastfeed my daughter exclusively until 7m helped her to stay healthy during the winter months.
Also, I have cried A LOT. I still do every once and awhile, but I have gotten much better. My daughter is such an incredible happy little soul and has made me such a happy person. Enjoy your baby. My thoughts are that I want her to LIVE not just be alive....
Good luck and God bless!
Sara
My daughter is almost 9m old now and doing pretty well. She also has the DF508 mutations and is pancreatic insufficient. If you have any questions I may be able to help, though I don't come on here too often.
To answer a few questions. Our daughter was born late October and was in the hospital until mid November. We visted some family, never if they were sick or had been near any sick people. Made sure everyone washed their hands before holding her, etc. I carry Purell all the time and wipe everything down. We stayed in for the majority of the winter, and few excursions here and there, but with all the DR appts and such we really didn't have that much time. I stayed home until she was 7m and then I started back part time. She is NOT in day care and has only had contact with two children, both who also are NOT in daycare. We have been incredibly blessed with no sickness thus far (knock on wood, praise God!) Additionally I feel that my ability, and frankly stubborness and perserverance, was able to breastfeed my daughter exclusively until 7m helped her to stay healthy during the winter months.
Also, I have cried A LOT. I still do every once and awhile, but I have gotten much better. My daughter is such an incredible happy little soul and has made me such a happy person. Enjoy your baby. My thoughts are that I want her to LIVE not just be alive....
Good luck and God bless!
Sara
JosephinesMommy
New member
HI! Welcome!
My daughter is almost 9m old now and doing pretty well. She also has the DF508 mutations and is pancreatic insufficient. If you have any questions I may be able to help, though I don't come on here too often.
To answer a few questions. Our daughter was born late October and was in the hospital until mid November. We visted some family, never if they were sick or had been near any sick people. Made sure everyone washed their hands before holding her, etc. I carry Purell all the time and wipe everything down. We stayed in for the majority of the winter, and few excursions here and there, but with all the DR appts and such we really didn't have that much time. I stayed home until she was 7m and then I started back part time. She is NOT in day care and has only had contact with two children, both who also are NOT in daycare. We have been incredibly blessed with no sickness thus far (knock on wood, praise God!) Additionally I feel that my ability, and frankly stubborness and perserverance, was able to breastfeed my daughter exclusively until 7m helped her to stay healthy during the winter months.
Also, I have cried A LOT. I still do every once and awhile, but I have gotten much better. My daughter is such an incredible happy little soul and has made me such a happy person. Enjoy your baby. My thoughts are that I want her to LIVE not just be alive....
Good luck and God bless!
Sara
My daughter is almost 9m old now and doing pretty well. She also has the DF508 mutations and is pancreatic insufficient. If you have any questions I may be able to help, though I don't come on here too often.
To answer a few questions. Our daughter was born late October and was in the hospital until mid November. We visted some family, never if they were sick or had been near any sick people. Made sure everyone washed their hands before holding her, etc. I carry Purell all the time and wipe everything down. We stayed in for the majority of the winter, and few excursions here and there, but with all the DR appts and such we really didn't have that much time. I stayed home until she was 7m and then I started back part time. She is NOT in day care and has only had contact with two children, both who also are NOT in daycare. We have been incredibly blessed with no sickness thus far (knock on wood, praise God!) Additionally I feel that my ability, and frankly stubborness and perserverance, was able to breastfeed my daughter exclusively until 7m helped her to stay healthy during the winter months.
Also, I have cried A LOT. I still do every once and awhile, but I have gotten much better. My daughter is such an incredible happy little soul and has made me such a happy person. Enjoy your baby. My thoughts are that I want her to LIVE not just be alive....
Good luck and God bless!
Sara
JosephinesMommy
New member
HI! Welcome!
<br />
<br />My daughter is almost 9m old now and doing pretty well. She also has the DF508 mutations and is pancreatic insufficient. If you have any questions I may be able to help, though I don't come on here too often.
<br />
<br />To answer a few questions. Our daughter was born late October and was in the hospital until mid November. We visted some family, never if they were sick or had been near any sick people. Made sure everyone washed their hands before holding her, etc. I carry Purell all the time and wipe everything down. We stayed in for the majority of the winter, and few excursions here and there, but with all the DR appts and such we really didn't have that much time. I stayed home until she was 7m and then I started back part time. She is NOT in day care and has only had contact with two children, both who also are NOT in daycare. We have been incredibly blessed with no sickness thus far (knock on wood, praise God!) Additionally I feel that my ability, and frankly stubborness and perserverance, was able to breastfeed my daughter exclusively until 7m helped her to stay healthy during the winter months.
<br />
<br />Also, I have cried A LOT. I still do every once and awhile, but I have gotten much better. My daughter is such an incredible happy little soul and has made me such a happy person. Enjoy your baby. My thoughts are that I want her to LIVE not just be alive....
<br />
<br />Good luck and God bless!
<br />
<br />Sara
<br />
<br />My daughter is almost 9m old now and doing pretty well. She also has the DF508 mutations and is pancreatic insufficient. If you have any questions I may be able to help, though I don't come on here too often.
<br />
<br />To answer a few questions. Our daughter was born late October and was in the hospital until mid November. We visted some family, never if they were sick or had been near any sick people. Made sure everyone washed their hands before holding her, etc. I carry Purell all the time and wipe everything down. We stayed in for the majority of the winter, and few excursions here and there, but with all the DR appts and such we really didn't have that much time. I stayed home until she was 7m and then I started back part time. She is NOT in day care and has only had contact with two children, both who also are NOT in daycare. We have been incredibly blessed with no sickness thus far (knock on wood, praise God!) Additionally I feel that my ability, and frankly stubborness and perserverance, was able to breastfeed my daughter exclusively until 7m helped her to stay healthy during the winter months.
<br />
<br />Also, I have cried A LOT. I still do every once and awhile, but I have gotten much better. My daughter is such an incredible happy little soul and has made me such a happy person. Enjoy your baby. My thoughts are that I want her to LIVE not just be alive....
<br />
<br />Good luck and God bless!
<br />
<br />Sara
I guess I'd be a bit concerned with him sounding "rattly" even though they've assured you that he's fine. When that occured with DS we stepped up his CPT from 3 to 4 per day. IMO, he's a little young to have a cough... I know it's overwhelming, but the key is to get into a routine and stick with it, so it becomes second nature -- i.e., get up in the morning, do CPT & nebs, feed baby. If you're home do so again after lunch or mid-afternoon around nap time, finish with one before bed. You can also just do mini-cpt treatments while you're holding him.
Are you going to a CF clinic or a regular clinic?
As for venturing out -- I was a little more cautious about going out during cold and flu season, but for the most part he stayed in his carseat carrier, so wasn't exposed to germy surfaces. To this day , I still wipe off handles of grocery carts and use hand sanitizer or wipes on both of us if we've been to the playground, to the store.... We also had a rule about how anyone who wanted to hold him had to wash their hands first, we avoided smoke and tried to avoid sick people. Otherwise, he went to daycare and is involved in normal activities.
Are you going to a CF clinic or a regular clinic?
As for venturing out -- I was a little more cautious about going out during cold and flu season, but for the most part he stayed in his carseat carrier, so wasn't exposed to germy surfaces. To this day , I still wipe off handles of grocery carts and use hand sanitizer or wipes on both of us if we've been to the playground, to the store.... We also had a rule about how anyone who wanted to hold him had to wash their hands first, we avoided smoke and tried to avoid sick people. Otherwise, he went to daycare and is involved in normal activities.
I guess I'd be a bit concerned with him sounding "rattly" even though they've assured you that he's fine. When that occured with DS we stepped up his CPT from 3 to 4 per day. IMO, he's a little young to have a cough... I know it's overwhelming, but the key is to get into a routine and stick with it, so it becomes second nature -- i.e., get up in the morning, do CPT & nebs, feed baby. If you're home do so again after lunch or mid-afternoon around nap time, finish with one before bed. You can also just do mini-cpt treatments while you're holding him.
Are you going to a CF clinic or a regular clinic?
As for venturing out -- I was a little more cautious about going out during cold and flu season, but for the most part he stayed in his carseat carrier, so wasn't exposed to germy surfaces. To this day , I still wipe off handles of grocery carts and use hand sanitizer or wipes on both of us if we've been to the playground, to the store.... We also had a rule about how anyone who wanted to hold him had to wash their hands first, we avoided smoke and tried to avoid sick people. Otherwise, he went to daycare and is involved in normal activities.
Are you going to a CF clinic or a regular clinic?
As for venturing out -- I was a little more cautious about going out during cold and flu season, but for the most part he stayed in his carseat carrier, so wasn't exposed to germy surfaces. To this day , I still wipe off handles of grocery carts and use hand sanitizer or wipes on both of us if we've been to the playground, to the store.... We also had a rule about how anyone who wanted to hold him had to wash their hands first, we avoided smoke and tried to avoid sick people. Otherwise, he went to daycare and is involved in normal activities.
I guess I'd be a bit concerned with him sounding "rattly" even though they've assured you that he's fine. When that occured with DS we stepped up his CPT from 3 to 4 per day. IMO, he's a little young to have a cough... I know it's overwhelming, but the key is to get into a routine and stick with it, so it becomes second nature -- i.e., get up in the morning, do CPT & nebs, feed baby. If you're home do so again after lunch or mid-afternoon around nap time, finish with one before bed. You can also just do mini-cpt treatments while you're holding him.
Are you going to a CF clinic or a regular clinic?
As for venturing out -- I was a little more cautious about going out during cold and flu season, but for the most part he stayed in his carseat carrier, so wasn't exposed to germy surfaces. To this day , I still wipe off handles of grocery carts and use hand sanitizer or wipes on both of us if we've been to the playground, to the store.... We also had a rule about how anyone who wanted to hold him had to wash their hands first, we avoided smoke and tried to avoid sick people. Otherwise, he went to daycare and is involved in normal activities.
Are you going to a CF clinic or a regular clinic?
As for venturing out -- I was a little more cautious about going out during cold and flu season, but for the most part he stayed in his carseat carrier, so wasn't exposed to germy surfaces. To this day , I still wipe off handles of grocery carts and use hand sanitizer or wipes on both of us if we've been to the playground, to the store.... We also had a rule about how anyone who wanted to hold him had to wash their hands first, we avoided smoke and tried to avoid sick people. Otherwise, he went to daycare and is involved in normal activities.
I guess I'd be a bit concerned with him sounding "rattly" even though they've assured you that he's fine. When that occured with DS we stepped up his CPT from 3 to 4 per day. IMO, he's a little young to have a cough... I know it's overwhelming, but the key is to get into a routine and stick with it, so it becomes second nature -- i.e., get up in the morning, do CPT & nebs, feed baby. If you're home do so again after lunch or mid-afternoon around nap time, finish with one before bed. You can also just do mini-cpt treatments while you're holding him.
Are you going to a CF clinic or a regular clinic?
As for venturing out -- I was a little more cautious about going out during cold and flu season, but for the most part he stayed in his carseat carrier, so wasn't exposed to germy surfaces. To this day , I still wipe off handles of grocery carts and use hand sanitizer or wipes on both of us if we've been to the playground, to the store.... We also had a rule about how anyone who wanted to hold him had to wash their hands first, we avoided smoke and tried to avoid sick people. Otherwise, he went to daycare and is involved in normal activities.
Are you going to a CF clinic or a regular clinic?
As for venturing out -- I was a little more cautious about going out during cold and flu season, but for the most part he stayed in his carseat carrier, so wasn't exposed to germy surfaces. To this day , I still wipe off handles of grocery carts and use hand sanitizer or wipes on both of us if we've been to the playground, to the store.... We also had a rule about how anyone who wanted to hold him had to wash their hands first, we avoided smoke and tried to avoid sick people. Otherwise, he went to daycare and is involved in normal activities.
I guess I'd be a bit concerned with him sounding "rattly" even though they've assured you that he's fine. When that occured with DS we stepped up his CPT from 3 to 4 per day. IMO, he's a little young to have a cough... I know it's overwhelming, but the key is to get into a routine and stick with it, so it becomes second nature -- i.e., get up in the morning, do CPT & nebs, feed baby. If you're home do so again after lunch or mid-afternoon around nap time, finish with one before bed. You can also just do mini-cpt treatments while you're holding him.
<br />
<br />Are you going to a CF clinic or a regular clinic?
<br />
<br />As for venturing out -- I was a little more cautious about going out during cold and flu season, but for the most part he stayed in his carseat carrier, so wasn't exposed to germy surfaces. To this day , I still wipe off handles of grocery carts and use hand sanitizer or wipes on both of us if we've been to the playground, to the store.... We also had a rule about how anyone who wanted to hold him had to wash their hands first, we avoided smoke and tried to avoid sick people. Otherwise, he went to daycare and is involved in normal activities.
<br />
<br />Are you going to a CF clinic or a regular clinic?
<br />
<br />As for venturing out -- I was a little more cautious about going out during cold and flu season, but for the most part he stayed in his carseat carrier, so wasn't exposed to germy surfaces. To this day , I still wipe off handles of grocery carts and use hand sanitizer or wipes on both of us if we've been to the playground, to the store.... We also had a rule about how anyone who wanted to hold him had to wash their hands first, we avoided smoke and tried to avoid sick people. Otherwise, he went to daycare and is involved in normal activities.
saveferris2009
New member
Welcome.
Definitely check out this article. <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>
And rest assured - although healthcare may be more expensive here (stick with a PPO if you can manage...), life expectancy for CFer's tends to be quite a bit higher than in other countries with CF people.
HMO's will cut down on your choices as will being on government healthcare. Choices are always important with CF.
Definitely check out this article. <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>
And rest assured - although healthcare may be more expensive here (stick with a PPO if you can manage...), life expectancy for CFer's tends to be quite a bit higher than in other countries with CF people.
HMO's will cut down on your choices as will being on government healthcare. Choices are always important with CF.
saveferris2009
New member
Welcome.
Definitely check out this article. <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>
And rest assured - although healthcare may be more expensive here (stick with a PPO if you can manage...), life expectancy for CFer's tends to be quite a bit higher than in other countries with CF people.
HMO's will cut down on your choices as will being on government healthcare. Choices are always important with CF.
Definitely check out this article. <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>
And rest assured - although healthcare may be more expensive here (stick with a PPO if you can manage...), life expectancy for CFer's tends to be quite a bit higher than in other countries with CF people.
HMO's will cut down on your choices as will being on government healthcare. Choices are always important with CF.
saveferris2009
New member
Welcome.
Definitely check out this article. <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>
And rest assured - although healthcare may be more expensive here (stick with a PPO if you can manage...), life expectancy for CFer's tends to be quite a bit higher than in other countries with CF people.
HMO's will cut down on your choices as will being on government healthcare. Choices are always important with CF.
Definitely check out this article. <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>
And rest assured - although healthcare may be more expensive here (stick with a PPO if you can manage...), life expectancy for CFer's tends to be quite a bit higher than in other countries with CF people.
HMO's will cut down on your choices as will being on government healthcare. Choices are always important with CF.
saveferris2009
New member
Welcome.
Definitely check out this article. <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>
And rest assured - although healthcare may be more expensive here (stick with a PPO if you can manage...), life expectancy for CFer's tends to be quite a bit higher than in other countries with CF people.
HMO's will cut down on your choices as will being on government healthcare. Choices are always important with CF.
Definitely check out this article. <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a>
And rest assured - although healthcare may be more expensive here (stick with a PPO if you can manage...), life expectancy for CFer's tends to be quite a bit higher than in other countries with CF people.
HMO's will cut down on your choices as will being on government healthcare. Choices are always important with CF.
saveferris2009
New member
Welcome.
<br />
<br />Definitely check out this article. <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a><br />
<br />And rest assured - although healthcare may be more expensive here (stick with a PPO if you can manage...), life expectancy for CFer's tends to be quite a bit higher than in other countries with CF people.
<br />
<br />HMO's will cut down on your choices as will being on government healthcare. Choices are always important with CF.
<br />
<br />Definitely check out this article. <a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Warwick
">http://noexcusesnoexcuses.blog.../search/label/Warwick
</a><br />
<br />And rest assured - although healthcare may be more expensive here (stick with a PPO if you can manage...), life expectancy for CFer's tends to be quite a bit higher than in other countries with CF people.
<br />
<br />HMO's will cut down on your choices as will being on government healthcare. Choices are always important with CF.