Hi Jessica and welcome to the site... It's a great place for support and information.. Jaelyn is a beautiful little girl and she is blessed to have a mother that cares enough about her to ask questions and is willing to learn and listen to the answers ...Keep us posted on her dr. appt. The key is to learn as much as you can, and to use that information so that Jaelyn stays as healthy as possible... God Bless you guys...<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f
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New here and question to cf'ers (or parents of)
- Thread starter jdprecious
- Start date
Hi Jessica and welcome to the site... It's a great place for support and information.. Jaelyn is a beautiful little girl and she is blessed to have a mother that cares enough about her to ask questions and is willing to learn and listen to the answers ...Keep us posted on her dr. appt. The key is to learn as much as you can, and to use that information so that Jaelyn stays as healthy as possible... God Bless you guys...<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f
Hi Jessica and welcome to the site... It's a great place for support and information.. Jaelyn is a beautiful little girl and she is blessed to have a mother that cares enough about her to ask questions and is willing to learn and listen to the answers ...Keep us posted on her dr. appt. The key is to learn as much as you can, and to use that information so that Jaelyn stays as healthy as possible... God Bless you guys...<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f
Hi Jessica and welcome to the site... It's a great place for support and information.. Jaelyn is a beautiful little girl and she is blessed to have a mother that cares enough about her to ask questions and is willing to learn and listen to the answers ...Keep us posted on her dr. appt. The key is to learn as much as you can, and to use that information so that Jaelyn stays as healthy as possible... God Bless you guys...<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f
Hi Jessica and welcome to the site... It's a great place for support and information.. Jaelyn is a beautiful little girl and she is blessed to have a mother that cares enough about her to ask questions and is willing to learn and listen to the answers ...Keep us posted on her dr. appt. The key is to learn as much as you can, and to use that information so that Jaelyn stays as healthy as possible... God Bless you guys...<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f
Hi Jessica and welcome to the site... It's a great place for support and information.. Jaelyn is a beautiful little girl and she is blessed to have a mother that cares enough about her to ask questions and is willing to learn and listen to the answers ...Keep us posted on her dr. appt. The key is to learn as much as you can, and to use that information so that Jaelyn stays as healthy as possible... God Bless you guys...<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f
Welcome, Jessica! We also live in Jacksonville, FL. I assume you see the docs at Nemours? Please consider attending our parent support group meetings. We have a great time! We meet once a month, usually the third Monday, from 6-7:30pm. Different speakers come about topics relating to CF and our Creon rep. brings dinner. We've got parents of kids ranging from baby to in college. Ask Pablo, our social worker, about it when you go to clinic next or pm me your email address so I can send you the e-flyer.
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome, Jessica! We also live in Jacksonville, FL. I assume you see the docs at Nemours? Please consider attending our parent support group meetings. We have a great time! We meet once a month, usually the third Monday, from 6-7:30pm. Different speakers come about topics relating to CF and our Creon rep. brings dinner. We've got parents of kids ranging from baby to in college. Ask Pablo, our social worker, about it when you go to clinic next or pm me your email address so I can send you the e-flyer.
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome, Jessica! We also live in Jacksonville, FL. I assume you see the docs at Nemours? Please consider attending our parent support group meetings. We have a great time! We meet once a month, usually the third Monday, from 6-7:30pm. Different speakers come about topics relating to CF and our Creon rep. brings dinner. We've got parents of kids ranging from baby to in college. Ask Pablo, our social worker, about it when you go to clinic next or pm me your email address so I can send you the e-flyer.
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome, Jessica! We also live in Jacksonville, FL. I assume you see the docs at Nemours? Please consider attending our parent support group meetings. We have a great time! We meet once a month, usually the third Monday, from 6-7:30pm. Different speakers come about topics relating to CF and our Creon rep. brings dinner. We've got parents of kids ranging from baby to in college. Ask Pablo, our social worker, about it when you go to clinic next or pm me your email address so I can send you the e-flyer.
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome, Jessica! We also live in Jacksonville, FL. I assume you see the docs at Nemours? Please consider attending our parent support group meetings. We have a great time! We meet once a month, usually the third Monday, from 6-7:30pm. Different speakers come about topics relating to CF and our Creon rep. brings dinner. We've got parents of kids ranging from baby to in college. Ask Pablo, our social worker, about it when you go to clinic next or pm me your email address so I can send you the e-flyer.
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Welcome, Jessica! We also live in Jacksonville, FL. I assume you see the docs at Nemours? Please consider attending our parent support group meetings. We have a great time! We meet once a month, usually the third Monday, from 6-7:30pm. Different speakers come about topics relating to CF and our Creon rep. brings dinner. We've got parents of kids ranging from baby to in college. Ask Pablo, our social worker, about it when you go to clinic next or pm me your email address so I can send you the e-flyer.
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
As for your questions, I think the others addressed them well. Our Leila looks very healthy too, but we don't ever miss treatments to help keep her looking that way. I hope to see you at group. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Is this a CF clinic you're going to? It's very important you get the CF team experience. Have a nice long discussion with them when you go.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Is this a CF clinic you're going to? It's very important you get the CF team experience. Have a nice long discussion with them when you go.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Is this a CF clinic you're going to? It's very important you get the CF team experience. Have a nice long discussion with them when you go.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Is this a CF clinic you're going to? It's very important you get the CF team experience. Have a nice long discussion with them when you go.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Is this a CF clinic you're going to? It's very important you get the CF team experience. Have a nice long discussion with them when you go.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Is this a CF clinic you're going to? It's very important you get the CF team experience. Have a nice long discussion with them when you go.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Again, maintenance is key, aerosol treatments are important, as well as creon and vitamins. I had a mom that was Really driven to care for my disease growing up, so much that she went to nursing school and became a CF nurse. It's good to get a kid used to treatments everyday, it becomes habit and they don't know any different when they become independent. I was relatively dilligent but slacked off on airway clearance, I have relatively good lung function, especially for a 30 y.o cfer, but lots of damage and scar tissue built up over the years. You can't really see what's going on. Antibiotics are the only thing she can really get resistant to, so check with the doc if she really needs them right now. Since she's diagnosed PA she may, I've been on antibiotics most of the past 29 years or so.
Trizzanne74
New member
TWO THOUGHTS: (and I have't read all of this thread, so hopefully I am not repeating too much)
I've recently heard a great quote when it comes to making decisions, "When unsure of what to do, always do good." or what seems to be the best.
Ok, that wasn't the exact quote but ANYHOW when it comes to your question. The best thing you could do would to be administering the meds ALL the time. That way, you have NO regrets in the long run. My mom was such a stickler when it came to giving me meds, being a nurse helped and I remember at times fighting and being upset about her rigidity. At the time as a child, I didn't understand why but now I am so thankful for this discipline and will never look back on my disease and think, could I be in better shape if my mom/dad did a better job? They did their best and I'll always know that.
Also, it's a good discipline to teach your daughter. When she is older, you do not want her to have the notion that she can take her meds only whens she feels she needs them because that will be a downhill battle. This will help TRAIN her to learn good habits and to be a disciplined young lady. I am not a parent, but I know a big job involves training your children. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jessica, You have a tough road ahead of you, and I admire you for all your hard work. Keep your head up and remember, your outlook on the disease will have a huge influence on her outlook! Stay Positive.
Tricia
I've recently heard a great quote when it comes to making decisions, "When unsure of what to do, always do good." or what seems to be the best.
Ok, that wasn't the exact quote but ANYHOW when it comes to your question. The best thing you could do would to be administering the meds ALL the time. That way, you have NO regrets in the long run. My mom was such a stickler when it came to giving me meds, being a nurse helped and I remember at times fighting and being upset about her rigidity. At the time as a child, I didn't understand why but now I am so thankful for this discipline and will never look back on my disease and think, could I be in better shape if my mom/dad did a better job? They did their best and I'll always know that.
Also, it's a good discipline to teach your daughter. When she is older, you do not want her to have the notion that she can take her meds only whens she feels she needs them because that will be a downhill battle. This will help TRAIN her to learn good habits and to be a disciplined young lady. I am not a parent, but I know a big job involves training your children. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jessica, You have a tough road ahead of you, and I admire you for all your hard work. Keep your head up and remember, your outlook on the disease will have a huge influence on her outlook! Stay Positive.
Tricia
Trizzanne74
New member
TWO THOUGHTS: (and I have't read all of this thread, so hopefully I am not repeating too much)
I've recently heard a great quote when it comes to making decisions, "When unsure of what to do, always do good." or what seems to be the best.
Ok, that wasn't the exact quote but ANYHOW when it comes to your question. The best thing you could do would to be administering the meds ALL the time. That way, you have NO regrets in the long run. My mom was such a stickler when it came to giving me meds, being a nurse helped and I remember at times fighting and being upset about her rigidity. At the time as a child, I didn't understand why but now I am so thankful for this discipline and will never look back on my disease and think, could I be in better shape if my mom/dad did a better job? They did their best and I'll always know that.
Also, it's a good discipline to teach your daughter. When she is older, you do not want her to have the notion that she can take her meds only whens she feels she needs them because that will be a downhill battle. This will help TRAIN her to learn good habits and to be a disciplined young lady. I am not a parent, but I know a big job involves training your children. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jessica, You have a tough road ahead of you, and I admire you for all your hard work. Keep your head up and remember, your outlook on the disease will have a huge influence on her outlook! Stay Positive.
Tricia
I've recently heard a great quote when it comes to making decisions, "When unsure of what to do, always do good." or what seems to be the best.
Ok, that wasn't the exact quote but ANYHOW when it comes to your question. The best thing you could do would to be administering the meds ALL the time. That way, you have NO regrets in the long run. My mom was such a stickler when it came to giving me meds, being a nurse helped and I remember at times fighting and being upset about her rigidity. At the time as a child, I didn't understand why but now I am so thankful for this discipline and will never look back on my disease and think, could I be in better shape if my mom/dad did a better job? They did their best and I'll always know that.
Also, it's a good discipline to teach your daughter. When she is older, you do not want her to have the notion that she can take her meds only whens she feels she needs them because that will be a downhill battle. This will help TRAIN her to learn good habits and to be a disciplined young lady. I am not a parent, but I know a big job involves training your children. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jessica, You have a tough road ahead of you, and I admire you for all your hard work. Keep your head up and remember, your outlook on the disease will have a huge influence on her outlook! Stay Positive.
Tricia