My beautiful 8 year old granddaughter was recently diagnosed with CF. Her 5 year old brother is soon to be tested. Our family is finding this so difficult to accept, as we know of no one in either family who has ever had CF. My daughter in law is having a terrible time with this, and it is as if she doesn't think about it, it will go away. How can I help her? I am trying to learn as much as I can, and be as positive as I can be. We have all cried buckets of tears, and we feel so helpless.
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- Thread starter LThorpe
- Start date
My beautiful 8 year old granddaughter was recently diagnosed with CF. Her 5 year old brother is soon to be tested. Our family is finding this so difficult to accept, as we know of no one in either family who has ever had CF. My daughter in law is having a terrible time with this, and it is as if she doesn't think about it, it will go away. How can I help her? I am trying to learn as much as I can, and be as positive as I can be. We have all cried buckets of tears, and we feel so helpless.
My beautiful 8 year old granddaughter was recently diagnosed with CF. Her 5 year old brother is soon to be tested. Our family is finding this so difficult to accept, as we know of no one in either family who has ever had CF. My daughter in law is having a terrible time with this, and it is as if she doesn't think about it, it will go away. How can I help her? I am trying to learn as much as I can, and be as positive as I can be. We have all cried buckets of tears, and we feel so helpless.
My beautiful 8 year old granddaughter was recently diagnosed with CF. Her 5 year old brother is soon to be tested. Our family is finding this so difficult to accept, as we know of no one in either family who has ever had CF. My daughter in law is having a terrible time with this, and it is as if she doesn't think about it, it will go away. How can I help her? I am trying to learn as much as I can, and be as positive as I can be. We have all cried buckets of tears, and we feel so helpless.
My beautiful 8 year old granddaughter was recently diagnosed with CF. Her 5 year old brother is soon to be tested. Our family is finding this so difficult to accept, as we know of no one in either family who has ever had CF. My daughter in law is having a terrible time with this, and it is as if she doesn't think about it, it will go away. How can I help her? I am trying to learn as much as I can, and be as positive as I can be. We have all cried buckets of tears, and we feel so helpless.
I know this is a difficult time for all of you, and trust me, everyone on this site has been there. It may just take time for everyone in the family to come to terms with the diagnosis.
As time passes, you all will gain more knowledge about CF and how it's going to impact all of your lives. For me sharing how I feel and gaining all the information I can about something helps me process things, feel more in control of something that is sometimes not controllable.
You can help by taking an interest in CF (and I know you already do ... you are here asking questions!) Your daughter in law may need a little more time to process things ... how long has it been since the diagnosis? What symptoms does your granddaughter show? How "sick" is she right now? What makes you say "It's as if she doesn't think about it, it will go away" Has your granddaughter been put on medication or advised to do CPT and the mother refuses to do those things? Or is she doing everything the doctors suggest, but she is trying to limit her daily thoughts and worries so she doesn't get overwhelmed?
Sorry to ask so many questions - it's just kind of hard to know how to help you, when I know so little about what you are seeing in her actions or lack there of, that concerns you.
This is a wonderful site - you will find a wealth of information here. The newly diagnosed section doesn't see a lot of traffic, so if you have questions that don't get addressed here, try the families or even adults sections if you need more answers/replies.
As time passes, you all will gain more knowledge about CF and how it's going to impact all of your lives. For me sharing how I feel and gaining all the information I can about something helps me process things, feel more in control of something that is sometimes not controllable.
You can help by taking an interest in CF (and I know you already do ... you are here asking questions!) Your daughter in law may need a little more time to process things ... how long has it been since the diagnosis? What symptoms does your granddaughter show? How "sick" is she right now? What makes you say "It's as if she doesn't think about it, it will go away" Has your granddaughter been put on medication or advised to do CPT and the mother refuses to do those things? Or is she doing everything the doctors suggest, but she is trying to limit her daily thoughts and worries so she doesn't get overwhelmed?
Sorry to ask so many questions - it's just kind of hard to know how to help you, when I know so little about what you are seeing in her actions or lack there of, that concerns you.
This is a wonderful site - you will find a wealth of information here. The newly diagnosed section doesn't see a lot of traffic, so if you have questions that don't get addressed here, try the families or even adults sections if you need more answers/replies.
I know this is a difficult time for all of you, and trust me, everyone on this site has been there. It may just take time for everyone in the family to come to terms with the diagnosis.
As time passes, you all will gain more knowledge about CF and how it's going to impact all of your lives. For me sharing how I feel and gaining all the information I can about something helps me process things, feel more in control of something that is sometimes not controllable.
You can help by taking an interest in CF (and I know you already do ... you are here asking questions!) Your daughter in law may need a little more time to process things ... how long has it been since the diagnosis? What symptoms does your granddaughter show? How "sick" is she right now? What makes you say "It's as if she doesn't think about it, it will go away" Has your granddaughter been put on medication or advised to do CPT and the mother refuses to do those things? Or is she doing everything the doctors suggest, but she is trying to limit her daily thoughts and worries so she doesn't get overwhelmed?
Sorry to ask so many questions - it's just kind of hard to know how to help you, when I know so little about what you are seeing in her actions or lack there of, that concerns you.
This is a wonderful site - you will find a wealth of information here. The newly diagnosed section doesn't see a lot of traffic, so if you have questions that don't get addressed here, try the families or even adults sections if you need more answers/replies.
As time passes, you all will gain more knowledge about CF and how it's going to impact all of your lives. For me sharing how I feel and gaining all the information I can about something helps me process things, feel more in control of something that is sometimes not controllable.
You can help by taking an interest in CF (and I know you already do ... you are here asking questions!) Your daughter in law may need a little more time to process things ... how long has it been since the diagnosis? What symptoms does your granddaughter show? How "sick" is she right now? What makes you say "It's as if she doesn't think about it, it will go away" Has your granddaughter been put on medication or advised to do CPT and the mother refuses to do those things? Or is she doing everything the doctors suggest, but she is trying to limit her daily thoughts and worries so she doesn't get overwhelmed?
Sorry to ask so many questions - it's just kind of hard to know how to help you, when I know so little about what you are seeing in her actions or lack there of, that concerns you.
This is a wonderful site - you will find a wealth of information here. The newly diagnosed section doesn't see a lot of traffic, so if you have questions that don't get addressed here, try the families or even adults sections if you need more answers/replies.
I know this is a difficult time for all of you, and trust me, everyone on this site has been there. It may just take time for everyone in the family to come to terms with the diagnosis.
As time passes, you all will gain more knowledge about CF and how it's going to impact all of your lives. For me sharing how I feel and gaining all the information I can about something helps me process things, feel more in control of something that is sometimes not controllable.
You can help by taking an interest in CF (and I know you already do ... you are here asking questions!) Your daughter in law may need a little more time to process things ... how long has it been since the diagnosis? What symptoms does your granddaughter show? How "sick" is she right now? What makes you say "It's as if she doesn't think about it, it will go away" Has your granddaughter been put on medication or advised to do CPT and the mother refuses to do those things? Or is she doing everything the doctors suggest, but she is trying to limit her daily thoughts and worries so she doesn't get overwhelmed?
Sorry to ask so many questions - it's just kind of hard to know how to help you, when I know so little about what you are seeing in her actions or lack there of, that concerns you.
This is a wonderful site - you will find a wealth of information here. The newly diagnosed section doesn't see a lot of traffic, so if you have questions that don't get addressed here, try the families or even adults sections if you need more answers/replies.
As time passes, you all will gain more knowledge about CF and how it's going to impact all of your lives. For me sharing how I feel and gaining all the information I can about something helps me process things, feel more in control of something that is sometimes not controllable.
You can help by taking an interest in CF (and I know you already do ... you are here asking questions!) Your daughter in law may need a little more time to process things ... how long has it been since the diagnosis? What symptoms does your granddaughter show? How "sick" is she right now? What makes you say "It's as if she doesn't think about it, it will go away" Has your granddaughter been put on medication or advised to do CPT and the mother refuses to do those things? Or is she doing everything the doctors suggest, but she is trying to limit her daily thoughts and worries so she doesn't get overwhelmed?
Sorry to ask so many questions - it's just kind of hard to know how to help you, when I know so little about what you are seeing in her actions or lack there of, that concerns you.
This is a wonderful site - you will find a wealth of information here. The newly diagnosed section doesn't see a lot of traffic, so if you have questions that don't get addressed here, try the families or even adults sections if you need more answers/replies.
I know this is a difficult time for all of you, and trust me, everyone on this site has been there. It may just take time for everyone in the family to come to terms with the diagnosis.
As time passes, you all will gain more knowledge about CF and how it's going to impact all of your lives. For me sharing how I feel and gaining all the information I can about something helps me process things, feel more in control of something that is sometimes not controllable.
You can help by taking an interest in CF (and I know you already do ... you are here asking questions!) Your daughter in law may need a little more time to process things ... how long has it been since the diagnosis? What symptoms does your granddaughter show? How "sick" is she right now? What makes you say "It's as if she doesn't think about it, it will go away" Has your granddaughter been put on medication or advised to do CPT and the mother refuses to do those things? Or is she doing everything the doctors suggest, but she is trying to limit her daily thoughts and worries so she doesn't get overwhelmed?
Sorry to ask so many questions - it's just kind of hard to know how to help you, when I know so little about what you are seeing in her actions or lack there of, that concerns you.
This is a wonderful site - you will find a wealth of information here. The newly diagnosed section doesn't see a lot of traffic, so if you have questions that don't get addressed here, try the families or even adults sections if you need more answers/replies.
As time passes, you all will gain more knowledge about CF and how it's going to impact all of your lives. For me sharing how I feel and gaining all the information I can about something helps me process things, feel more in control of something that is sometimes not controllable.
You can help by taking an interest in CF (and I know you already do ... you are here asking questions!) Your daughter in law may need a little more time to process things ... how long has it been since the diagnosis? What symptoms does your granddaughter show? How "sick" is she right now? What makes you say "It's as if she doesn't think about it, it will go away" Has your granddaughter been put on medication or advised to do CPT and the mother refuses to do those things? Or is she doing everything the doctors suggest, but she is trying to limit her daily thoughts and worries so she doesn't get overwhelmed?
Sorry to ask so many questions - it's just kind of hard to know how to help you, when I know so little about what you are seeing in her actions or lack there of, that concerns you.
This is a wonderful site - you will find a wealth of information here. The newly diagnosed section doesn't see a lot of traffic, so if you have questions that don't get addressed here, try the families or even adults sections if you need more answers/replies.
I know this is a difficult time for all of you, and trust me, everyone on this site has been there. It may just take time for everyone in the family to come to terms with the diagnosis.
As time passes, you all will gain more knowledge about CF and how it's going to impact all of your lives. For me sharing how I feel and gaining all the information I can about something helps me process things, feel more in control of something that is sometimes not controllable.
You can help by taking an interest in CF (and I know you already do ... you are here asking questions!) Your daughter in law may need a little more time to process things ... how long has it been since the diagnosis? What symptoms does your granddaughter show? How "sick" is she right now? What makes you say "It's as if she doesn't think about it, it will go away" Has your granddaughter been put on medication or advised to do CPT and the mother refuses to do those things? Or is she doing everything the doctors suggest, but she is trying to limit her daily thoughts and worries so she doesn't get overwhelmed?
Sorry to ask so many questions - it's just kind of hard to know how to help you, when I know so little about what you are seeing in her actions or lack there of, that concerns you.
This is a wonderful site - you will find a wealth of information here. The newly diagnosed section doesn't see a lot of traffic, so if you have questions that don't get addressed here, try the families or even adults sections if you need more answers/replies.
As time passes, you all will gain more knowledge about CF and how it's going to impact all of your lives. For me sharing how I feel and gaining all the information I can about something helps me process things, feel more in control of something that is sometimes not controllable.
You can help by taking an interest in CF (and I know you already do ... you are here asking questions!) Your daughter in law may need a little more time to process things ... how long has it been since the diagnosis? What symptoms does your granddaughter show? How "sick" is she right now? What makes you say "It's as if she doesn't think about it, it will go away" Has your granddaughter been put on medication or advised to do CPT and the mother refuses to do those things? Or is she doing everything the doctors suggest, but she is trying to limit her daily thoughts and worries so she doesn't get overwhelmed?
Sorry to ask so many questions - it's just kind of hard to know how to help you, when I know so little about what you are seeing in her actions or lack there of, that concerns you.
This is a wonderful site - you will find a wealth of information here. The newly diagnosed section doesn't see a lot of traffic, so if you have questions that don't get addressed here, try the families or even adults sections if you need more answers/replies.
Thanks for your reply. She was diagnosed in early August. For two years she was treated for asthma and allergies, finally with her second case of pneumonia, the allergist sent her to Children's Hospital at Chapel Hill for further testing. She tested positive for CF, and was hospitalized because of staph and bacterial lung infections. She is now on enzymes and CPT, and her vest has been ordered. She has to go back to Chapel Hill in 4 weeks for a checkup. She is doing well and has finally gained weight. My daughter in law is a wonderful mother, and she is doing everything that the doctor tells her and more. She just doesn't want anyone outside of the family to know about the diagnosis, and doesn't like to talk about it even with the family. I hate to see her hurting so much. My son is wonderfully supportive, and he is ready for counseling and is trying to learn everything he can. The only symptoms my grandson has is frequent foul smelling stools.
Thanks for your reply. She was diagnosed in early August. For two years she was treated for asthma and allergies, finally with her second case of pneumonia, the allergist sent her to Children's Hospital at Chapel Hill for further testing. She tested positive for CF, and was hospitalized because of staph and bacterial lung infections. She is now on enzymes and CPT, and her vest has been ordered. She has to go back to Chapel Hill in 4 weeks for a checkup. She is doing well and has finally gained weight. My daughter in law is a wonderful mother, and she is doing everything that the doctor tells her and more. She just doesn't want anyone outside of the family to know about the diagnosis, and doesn't like to talk about it even with the family. I hate to see her hurting so much. My son is wonderfully supportive, and he is ready for counseling and is trying to learn everything he can. The only symptoms my grandson has is frequent foul smelling stools.
Thanks for your reply. She was diagnosed in early August. For two years she was treated for asthma and allergies, finally with her second case of pneumonia, the allergist sent her to Children's Hospital at Chapel Hill for further testing. She tested positive for CF, and was hospitalized because of staph and bacterial lung infections. She is now on enzymes and CPT, and her vest has been ordered. She has to go back to Chapel Hill in 4 weeks for a checkup. She is doing well and has finally gained weight. My daughter in law is a wonderful mother, and she is doing everything that the doctor tells her and more. She just doesn't want anyone outside of the family to know about the diagnosis, and doesn't like to talk about it even with the family. I hate to see her hurting so much. My son is wonderfully supportive, and he is ready for counseling and is trying to learn everything he can. The only symptoms my grandson has is frequent foul smelling stools.
Thanks for your reply. She was diagnosed in early August. For two years she was treated for asthma and allergies, finally with her second case of pneumonia, the allergist sent her to Children's Hospital at Chapel Hill for further testing. She tested positive for CF, and was hospitalized because of staph and bacterial lung infections. She is now on enzymes and CPT, and her vest has been ordered. She has to go back to Chapel Hill in 4 weeks for a checkup. She is doing well and has finally gained weight. My daughter in law is a wonderful mother, and she is doing everything that the doctor tells her and more. She just doesn't want anyone outside of the family to know about the diagnosis, and doesn't like to talk about it even with the family. I hate to see her hurting so much. My son is wonderfully supportive, and he is ready for counseling and is trying to learn everything he can. The only symptoms my grandson has is frequent foul smelling stools.
Thanks for your reply. She was diagnosed in early August. For two years she was treated for asthma and allergies, finally with her second case of pneumonia, the allergist sent her to Children's Hospital at Chapel Hill for further testing. She tested positive for CF, and was hospitalized because of staph and bacterial lung infections. She is now on enzymes and CPT, and her vest has been ordered. She has to go back to Chapel Hill in 4 weeks for a checkup. She is doing well and has finally gained weight. My daughter in law is a wonderful mother, and she is doing everything that the doctor tells her and more. She just doesn't want anyone outside of the family to know about the diagnosis, and doesn't like to talk about it even with the family. I hate to see her hurting so much. My son is wonderfully supportive, and he is ready for counseling and is trying to learn everything he can. The only symptoms my grandson has is frequent foul smelling stools.
When DS was diagnosed, I had difficulty talking about it because we were still grieving and I knew I would cry, could hardly speak. I'd hate that look of pity people would give me. Other times, I was just darned tired of explaining his symptoms to people, tired of explaining he wasn't going to outgrow this, that there was no such thing as a mild case... Felt like I was constantly repeating myself, reliving things over and over -- and sometimes it was the same people asking the same questions, as if they kept asking, maybe my answer would change.
And it depended upon who I'd be talking to. Some people were genuinely interested, others would take it upon themselves to research all things CF -- sometimes outdated info and every time I'd talk to them it'd be a "new" fact, treatment option... And there are some people whom I still avoid talking to because they seem to get attention out of fact that their relative has a disease -- I feel that it's all about them getting attention. Or better yet -- we had family and coworkers who seemed to not believe the diagnosis -- as if we were faking it and we'd get the "he doesn't look sick comments". I'm not saying that you are doing any of these things, but there maybe others within your family who aren't as supportive. I know there've been other people on this site who've had similar issues with friends and family.
In our case, I had a normal pregnancy, and we expected to take out child home from the hospital after a few days. I was worried he'd maybe be colicky, that he'd have ear infections like my husband did as a child and might have to tubes. Surprise! There's a lot of information that's been thrown at you and your family and it's a bit overwhelming. This is a lifestyle change. When CPT was first started I thought -- omigosh we have to do this 3-4 times a day FOREVER! Other side of the coin -- we do all this stuff because we want him to lead a normal life.
And it depended upon who I'd be talking to. Some people were genuinely interested, others would take it upon themselves to research all things CF -- sometimes outdated info and every time I'd talk to them it'd be a "new" fact, treatment option... And there are some people whom I still avoid talking to because they seem to get attention out of fact that their relative has a disease -- I feel that it's all about them getting attention. Or better yet -- we had family and coworkers who seemed to not believe the diagnosis -- as if we were faking it and we'd get the "he doesn't look sick comments". I'm not saying that you are doing any of these things, but there maybe others within your family who aren't as supportive. I know there've been other people on this site who've had similar issues with friends and family.
In our case, I had a normal pregnancy, and we expected to take out child home from the hospital after a few days. I was worried he'd maybe be colicky, that he'd have ear infections like my husband did as a child and might have to tubes. Surprise! There's a lot of information that's been thrown at you and your family and it's a bit overwhelming. This is a lifestyle change. When CPT was first started I thought -- omigosh we have to do this 3-4 times a day FOREVER! Other side of the coin -- we do all this stuff because we want him to lead a normal life.
When DS was diagnosed, I had difficulty talking about it because we were still grieving and I knew I would cry, could hardly speak. I'd hate that look of pity people would give me. Other times, I was just darned tired of explaining his symptoms to people, tired of explaining he wasn't going to outgrow this, that there was no such thing as a mild case... Felt like I was constantly repeating myself, reliving things over and over -- and sometimes it was the same people asking the same questions, as if they kept asking, maybe my answer would change.
And it depended upon who I'd be talking to. Some people were genuinely interested, others would take it upon themselves to research all things CF -- sometimes outdated info and every time I'd talk to them it'd be a "new" fact, treatment option... And there are some people whom I still avoid talking to because they seem to get attention out of fact that their relative has a disease -- I feel that it's all about them getting attention. Or better yet -- we had family and coworkers who seemed to not believe the diagnosis -- as if we were faking it and we'd get the "he doesn't look sick comments". I'm not saying that you are doing any of these things, but there maybe others within your family who aren't as supportive. I know there've been other people on this site who've had similar issues with friends and family.
In our case, I had a normal pregnancy, and we expected to take out child home from the hospital after a few days. I was worried he'd maybe be colicky, that he'd have ear infections like my husband did as a child and might have to tubes. Surprise! There's a lot of information that's been thrown at you and your family and it's a bit overwhelming. This is a lifestyle change. When CPT was first started I thought -- omigosh we have to do this 3-4 times a day FOREVER! Other side of the coin -- we do all this stuff because we want him to lead a normal life.
And it depended upon who I'd be talking to. Some people were genuinely interested, others would take it upon themselves to research all things CF -- sometimes outdated info and every time I'd talk to them it'd be a "new" fact, treatment option... And there are some people whom I still avoid talking to because they seem to get attention out of fact that their relative has a disease -- I feel that it's all about them getting attention. Or better yet -- we had family and coworkers who seemed to not believe the diagnosis -- as if we were faking it and we'd get the "he doesn't look sick comments". I'm not saying that you are doing any of these things, but there maybe others within your family who aren't as supportive. I know there've been other people on this site who've had similar issues with friends and family.
In our case, I had a normal pregnancy, and we expected to take out child home from the hospital after a few days. I was worried he'd maybe be colicky, that he'd have ear infections like my husband did as a child and might have to tubes. Surprise! There's a lot of information that's been thrown at you and your family and it's a bit overwhelming. This is a lifestyle change. When CPT was first started I thought -- omigosh we have to do this 3-4 times a day FOREVER! Other side of the coin -- we do all this stuff because we want him to lead a normal life.
When DS was diagnosed, I had difficulty talking about it because we were still grieving and I knew I would cry, could hardly speak. I'd hate that look of pity people would give me. Other times, I was just darned tired of explaining his symptoms to people, tired of explaining he wasn't going to outgrow this, that there was no such thing as a mild case... Felt like I was constantly repeating myself, reliving things over and over -- and sometimes it was the same people asking the same questions, as if they kept asking, maybe my answer would change.
And it depended upon who I'd be talking to. Some people were genuinely interested, others would take it upon themselves to research all things CF -- sometimes outdated info and every time I'd talk to them it'd be a "new" fact, treatment option... And there are some people whom I still avoid talking to because they seem to get attention out of fact that their relative has a disease -- I feel that it's all about them getting attention. Or better yet -- we had family and coworkers who seemed to not believe the diagnosis -- as if we were faking it and we'd get the "he doesn't look sick comments". I'm not saying that you are doing any of these things, but there maybe others within your family who aren't as supportive. I know there've been other people on this site who've had similar issues with friends and family.
In our case, I had a normal pregnancy, and we expected to take out child home from the hospital after a few days. I was worried he'd maybe be colicky, that he'd have ear infections like my husband did as a child and might have to tubes. Surprise! There's a lot of information that's been thrown at you and your family and it's a bit overwhelming. This is a lifestyle change. When CPT was first started I thought -- omigosh we have to do this 3-4 times a day FOREVER! Other side of the coin -- we do all this stuff because we want him to lead a normal life.
And it depended upon who I'd be talking to. Some people were genuinely interested, others would take it upon themselves to research all things CF -- sometimes outdated info and every time I'd talk to them it'd be a "new" fact, treatment option... And there are some people whom I still avoid talking to because they seem to get attention out of fact that their relative has a disease -- I feel that it's all about them getting attention. Or better yet -- we had family and coworkers who seemed to not believe the diagnosis -- as if we were faking it and we'd get the "he doesn't look sick comments". I'm not saying that you are doing any of these things, but there maybe others within your family who aren't as supportive. I know there've been other people on this site who've had similar issues with friends and family.
In our case, I had a normal pregnancy, and we expected to take out child home from the hospital after a few days. I was worried he'd maybe be colicky, that he'd have ear infections like my husband did as a child and might have to tubes. Surprise! There's a lot of information that's been thrown at you and your family and it's a bit overwhelming. This is a lifestyle change. When CPT was first started I thought -- omigosh we have to do this 3-4 times a day FOREVER! Other side of the coin -- we do all this stuff because we want him to lead a normal life.
When DS was diagnosed, I had difficulty talking about it because we were still grieving and I knew I would cry, could hardly speak. I'd hate that look of pity people would give me. Other times, I was just darned tired of explaining his symptoms to people, tired of explaining he wasn't going to outgrow this, that there was no such thing as a mild case... Felt like I was constantly repeating myself, reliving things over and over -- and sometimes it was the same people asking the same questions, as if they kept asking, maybe my answer would change.
And it depended upon who I'd be talking to. Some people were genuinely interested, others would take it upon themselves to research all things CF -- sometimes outdated info and every time I'd talk to them it'd be a "new" fact, treatment option... And there are some people whom I still avoid talking to because they seem to get attention out of fact that their relative has a disease -- I feel that it's all about them getting attention. Or better yet -- we had family and coworkers who seemed to not believe the diagnosis -- as if we were faking it and we'd get the "he doesn't look sick comments". I'm not saying that you are doing any of these things, but there maybe others within your family who aren't as supportive. I know there've been other people on this site who've had similar issues with friends and family.
In our case, I had a normal pregnancy, and we expected to take out child home from the hospital after a few days. I was worried he'd maybe be colicky, that he'd have ear infections like my husband did as a child and might have to tubes. Surprise! There's a lot of information that's been thrown at you and your family and it's a bit overwhelming. This is a lifestyle change. When CPT was first started I thought -- omigosh we have to do this 3-4 times a day FOREVER! Other side of the coin -- we do all this stuff because we want him to lead a normal life.
And it depended upon who I'd be talking to. Some people were genuinely interested, others would take it upon themselves to research all things CF -- sometimes outdated info and every time I'd talk to them it'd be a "new" fact, treatment option... And there are some people whom I still avoid talking to because they seem to get attention out of fact that their relative has a disease -- I feel that it's all about them getting attention. Or better yet -- we had family and coworkers who seemed to not believe the diagnosis -- as if we were faking it and we'd get the "he doesn't look sick comments". I'm not saying that you are doing any of these things, but there maybe others within your family who aren't as supportive. I know there've been other people on this site who've had similar issues with friends and family.
In our case, I had a normal pregnancy, and we expected to take out child home from the hospital after a few days. I was worried he'd maybe be colicky, that he'd have ear infections like my husband did as a child and might have to tubes. Surprise! There's a lot of information that's been thrown at you and your family and it's a bit overwhelming. This is a lifestyle change. When CPT was first started I thought -- omigosh we have to do this 3-4 times a day FOREVER! Other side of the coin -- we do all this stuff because we want him to lead a normal life.
When DS was diagnosed, I had difficulty talking about it because we were still grieving and I knew I would cry, could hardly speak. I'd hate that look of pity people would give me. Other times, I was just darned tired of explaining his symptoms to people, tired of explaining he wasn't going to outgrow this, that there was no such thing as a mild case... Felt like I was constantly repeating myself, reliving things over and over -- and sometimes it was the same people asking the same questions, as if they kept asking, maybe my answer would change.
And it depended upon who I'd be talking to. Some people were genuinely interested, others would take it upon themselves to research all things CF -- sometimes outdated info and every time I'd talk to them it'd be a "new" fact, treatment option... And there are some people whom I still avoid talking to because they seem to get attention out of fact that their relative has a disease -- I feel that it's all about them getting attention. Or better yet -- we had family and coworkers who seemed to not believe the diagnosis -- as if we were faking it and we'd get the "he doesn't look sick comments". I'm not saying that you are doing any of these things, but there maybe others within your family who aren't as supportive. I know there've been other people on this site who've had similar issues with friends and family.
In our case, I had a normal pregnancy, and we expected to take out child home from the hospital after a few days. I was worried he'd maybe be colicky, that he'd have ear infections like my husband did as a child and might have to tubes. Surprise! There's a lot of information that's been thrown at you and your family and it's a bit overwhelming. This is a lifestyle change. When CPT was first started I thought -- omigosh we have to do this 3-4 times a day FOREVER! Other side of the coin -- we do all this stuff because we want him to lead a normal life.
And it depended upon who I'd be talking to. Some people were genuinely interested, others would take it upon themselves to research all things CF -- sometimes outdated info and every time I'd talk to them it'd be a "new" fact, treatment option... And there are some people whom I still avoid talking to because they seem to get attention out of fact that their relative has a disease -- I feel that it's all about them getting attention. Or better yet -- we had family and coworkers who seemed to not believe the diagnosis -- as if we were faking it and we'd get the "he doesn't look sick comments". I'm not saying that you are doing any of these things, but there maybe others within your family who aren't as supportive. I know there've been other people on this site who've had similar issues with friends and family.
In our case, I had a normal pregnancy, and we expected to take out child home from the hospital after a few days. I was worried he'd maybe be colicky, that he'd have ear infections like my husband did as a child and might have to tubes. Surprise! There's a lot of information that's been thrown at you and your family and it's a bit overwhelming. This is a lifestyle change. When CPT was first started I thought -- omigosh we have to do this 3-4 times a day FOREVER! Other side of the coin -- we do all this stuff because we want him to lead a normal life.