just got the news

Ratatosk

Administrator
Staff member
Sorry we have to welcome you to our family. At least know she's getting the treatment she needs, medications... When DS was diagnosed my MIL was sure we needed to get rid of our dog, cancel daycare... We spoke to our doctor about those issues and others and he indicated DS was a normal little boy and to treat him accordingly. I DID get my housecleaned -- my MIL cleaned the place from top to bottom while DS was in the hospital recovering from surgery due to meconium illeus.

I imagine your daughter is going to start feeling a bit better, have more energy once she gets into a routine. Please feel free to ask any questions.
 

Ratatosk

Administrator
Staff member
Sorry we have to welcome you to our family. At least know she's getting the treatment she needs, medications... When DS was diagnosed my MIL was sure we needed to get rid of our dog, cancel daycare... We spoke to our doctor about those issues and others and he indicated DS was a normal little boy and to treat him accordingly. I DID get my housecleaned -- my MIL cleaned the place from top to bottom while DS was in the hospital recovering from surgery due to meconium illeus.

I imagine your daughter is going to start feeling a bit better, have more energy once she gets into a routine. Please feel free to ask any questions.
 

Ratatosk

Administrator
Staff member
Sorry we have to welcome you to our family. At least know she's getting the treatment she needs, medications... When DS was diagnosed my MIL was sure we needed to get rid of our dog, cancel daycare... We spoke to our doctor about those issues and others and he indicated DS was a normal little boy and to treat him accordingly. I DID get my housecleaned -- my MIL cleaned the place from top to bottom while DS was in the hospital recovering from surgery due to meconium illeus.

I imagine your daughter is going to start feeling a bit better, have more energy once she gets into a routine. Please feel free to ask any questions.
 

Ratatosk

Administrator
Staff member
Sorry we have to welcome you to our family. At least know she's getting the treatment she needs, medications... When DS was diagnosed my MIL was sure we needed to get rid of our dog, cancel daycare... We spoke to our doctor about those issues and others and he indicated DS was a normal little boy and to treat him accordingly. I DID get my housecleaned -- my MIL cleaned the place from top to bottom while DS was in the hospital recovering from surgery due to meconium illeus.

I imagine your daughter is going to start feeling a bit better, have more energy once she gets into a routine. Please feel free to ask any questions.
 

Ratatosk

Administrator
Staff member
Sorry we have to welcome you to our family. At least know she's getting the treatment she needs, medications... When DS was diagnosed my MIL was sure we needed to get rid of our dog, cancel daycare... We spoke to our doctor about those issues and others and he indicated DS was a normal little boy and to treat him accordingly. I DID get my housecleaned -- my MIL cleaned the place from top to bottom while DS was in the hospital recovering from surgery due to meconium illeus.
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<br />I imagine your daughter is going to start feeling a bit better, have more energy once she gets into a routine. Please feel free to ask any questions.
 

LouLou

New member
Good advice by everyone else. Just wanted to mention that you should be working ASAP on getting an appt for your daughter with an accredited cf center (check cff.org for a list in your area). It might be a few weeks/month for a new patient appt so you should be in touch soon. Don't let your pulmonologist convince you he can care for her. You need an accredited cf center at least until you know the in's and out's of cf before you'd ever want to consider letting a pulmo care for her cf. Even then, it's not such a good idea b/c there is so much cf related not just lung/sinus issues. Don't be a pet project for anybody - go to the experts :)
 

LouLou

New member
Good advice by everyone else. Just wanted to mention that you should be working ASAP on getting an appt for your daughter with an accredited cf center (check cff.org for a list in your area). It might be a few weeks/month for a new patient appt so you should be in touch soon. Don't let your pulmonologist convince you he can care for her. You need an accredited cf center at least until you know the in's and out's of cf before you'd ever want to consider letting a pulmo care for her cf. Even then, it's not such a good idea b/c there is so much cf related not just lung/sinus issues. Don't be a pet project for anybody - go to the experts :)
 

LouLou

New member
Good advice by everyone else. Just wanted to mention that you should be working ASAP on getting an appt for your daughter with an accredited cf center (check cff.org for a list in your area). It might be a few weeks/month for a new patient appt so you should be in touch soon. Don't let your pulmonologist convince you he can care for her. You need an accredited cf center at least until you know the in's and out's of cf before you'd ever want to consider letting a pulmo care for her cf. Even then, it's not such a good idea b/c there is so much cf related not just lung/sinus issues. Don't be a pet project for anybody - go to the experts :)
 

LouLou

New member
Good advice by everyone else. Just wanted to mention that you should be working ASAP on getting an appt for your daughter with an accredited cf center (check cff.org for a list in your area). It might be a few weeks/month for a new patient appt so you should be in touch soon. Don't let your pulmonologist convince you he can care for her. You need an accredited cf center at least until you know the in's and out's of cf before you'd ever want to consider letting a pulmo care for her cf. Even then, it's not such a good idea b/c there is so much cf related not just lung/sinus issues. Don't be a pet project for anybody - go to the experts :)
 

LouLou

New member
Good advice by everyone else. Just wanted to mention that you should be working ASAP on getting an appt for your daughter with an accredited cf center (check cff.org for a list in your area). It might be a few weeks/month for a new patient appt so you should be in touch soon. Don't let your pulmonologist convince you he can care for her. You need an accredited cf center at least until you know the in's and out's of cf before you'd ever want to consider letting a pulmo care for her cf. Even then, it's not such a good idea b/c there is so much cf related not just lung/sinus issues. Don't be a pet project for anybody - go to the experts :)
 

happyone

New member
I'm so sorry to hear about the diagnosis... but you've certainly come to the right place! This is such an amazing resource and it's so comforting to have other people to talk to. I know it's horribly overwhelming... but it really does get easier. My Daughter was dx at 6 weeks. I thought I'd never be able to look at her without thinking about this horrible disease and wondering how long she would live. Now she's a year and a half old, crazy busy, and the treatments are just part of the day. My ears perk up a bit more whenever she gets a cough or sniffles... but it's not devastating anymore. It really does get easier!
 

happyone

New member
I'm so sorry to hear about the diagnosis... but you've certainly come to the right place! This is such an amazing resource and it's so comforting to have other people to talk to. I know it's horribly overwhelming... but it really does get easier. My Daughter was dx at 6 weeks. I thought I'd never be able to look at her without thinking about this horrible disease and wondering how long she would live. Now she's a year and a half old, crazy busy, and the treatments are just part of the day. My ears perk up a bit more whenever she gets a cough or sniffles... but it's not devastating anymore. It really does get easier!
 

happyone

New member
I'm so sorry to hear about the diagnosis... but you've certainly come to the right place! This is such an amazing resource and it's so comforting to have other people to talk to. I know it's horribly overwhelming... but it really does get easier. My Daughter was dx at 6 weeks. I thought I'd never be able to look at her without thinking about this horrible disease and wondering how long she would live. Now she's a year and a half old, crazy busy, and the treatments are just part of the day. My ears perk up a bit more whenever she gets a cough or sniffles... but it's not devastating anymore. It really does get easier!
 

happyone

New member
I'm so sorry to hear about the diagnosis... but you've certainly come to the right place! This is such an amazing resource and it's so comforting to have other people to talk to. I know it's horribly overwhelming... but it really does get easier. My Daughter was dx at 6 weeks. I thought I'd never be able to look at her without thinking about this horrible disease and wondering how long she would live. Now she's a year and a half old, crazy busy, and the treatments are just part of the day. My ears perk up a bit more whenever she gets a cough or sniffles... but it's not devastating anymore. It really does get easier!
 

happyone

New member
I'm so sorry to hear about the diagnosis... but you've certainly come to the right place! This is such an amazing resource and it's so comforting to have other people to talk to. I know it's horribly overwhelming... but it really does get easier. My Daughter was dx at 6 weeks. I thought I'd never be able to look at her without thinking about this horrible disease and wondering how long she would live. Now she's a year and a half old, crazy busy, and the treatments are just part of the day. My ears perk up a bit more whenever she gets a cough or sniffles... but it's not devastating anymore. It really does get easier!
 

HollyAnnsMom

New member
Hello and welcome. This site has helped me through a many of tear filled days when I worry too much. My little one was dx at 6 weeks also thanks to newborn testing that our state made mandatory just 4 days before birth. The dx sucks at the time but you do learn how to care for your precious little girl and exactly what she needs to thrive. I agree with everyone else don't rush in to life style changes, over time you will find what works for you and your family. We are all different but we are all striving for the same purpose. God Bless and good luck with everything. When things seem overwhelming just log on to here and there will always be someone to help get you going again. The folks here are great!
 

HollyAnnsMom

New member
Hello and welcome. This site has helped me through a many of tear filled days when I worry too much. My little one was dx at 6 weeks also thanks to newborn testing that our state made mandatory just 4 days before birth. The dx sucks at the time but you do learn how to care for your precious little girl and exactly what she needs to thrive. I agree with everyone else don't rush in to life style changes, over time you will find what works for you and your family. We are all different but we are all striving for the same purpose. God Bless and good luck with everything. When things seem overwhelming just log on to here and there will always be someone to help get you going again. The folks here are great!
 

HollyAnnsMom

New member
Hello and welcome. This site has helped me through a many of tear filled days when I worry too much. My little one was dx at 6 weeks also thanks to newborn testing that our state made mandatory just 4 days before birth. The dx sucks at the time but you do learn how to care for your precious little girl and exactly what she needs to thrive. I agree with everyone else don't rush in to life style changes, over time you will find what works for you and your family. We are all different but we are all striving for the same purpose. God Bless and good luck with everything. When things seem overwhelming just log on to here and there will always be someone to help get you going again. The folks here are great!
 

HollyAnnsMom

New member
Hello and welcome. This site has helped me through a many of tear filled days when I worry too much. My little one was dx at 6 weeks also thanks to newborn testing that our state made mandatory just 4 days before birth. The dx sucks at the time but you do learn how to care for your precious little girl and exactly what she needs to thrive. I agree with everyone else don't rush in to life style changes, over time you will find what works for you and your family. We are all different but we are all striving for the same purpose. God Bless and good luck with everything. When things seem overwhelming just log on to here and there will always be someone to help get you going again. The folks here are great!
 

HollyAnnsMom

New member
Hello and welcome. This site has helped me through a many of tear filled days when I worry too much. My little one was dx at 6 weeks also thanks to newborn testing that our state made mandatory just 4 days before birth. The dx sucks at the time but you do learn how to care for your precious little girl and exactly what she needs to thrive. I agree with everyone else don't rush in to life style changes, over time you will find what works for you and your family. We are all different but we are all striving for the same purpose. God Bless and good luck with everything. When things seem overwhelming just log on to here and there will always be someone to help get you going again. The folks here are great!
 
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