totally new to this...

[Alyssa]

Here are some links to threads that are about the same gene mutations - I have posted on each of these.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=23505&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=1881&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=23523&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=3636&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

Also, from the first link is what I typed to that mom - see the whole thing for what she asked and what other responded, but here is a copy paste of what I had said because she was particularly concerned about the possibility of outliving her child.

*************
Please read the first entry on my blog page - my kids have the same mutations as your child. There are several other people on this site that also have those two mutations. I have become very good friends with a woman in her 30's (Marci - I think her username is marcijo) who is very similar to my daughter's presentation of CF. Below is some information about the three adults with CF that I know quite a bit about.....

Nobody can say for sure what will happen.... and all the usual disclaimers apply (everyone is different, other factors contribute to clinical outcomes, you cannot say for sure what will happen just because you have a certain gene, things can and do change rapidly) yadda yadda yadda but, having said all of that, I can tell you what I know has happened to my two kids and Marci, so you will have an idea of how things have shaped up so far. All three of these people with CF are pancreatic sufficient (something that is commonly associated with the R117H gene and helps to contribute to their overall health) They do not have any problems absorbing the nutrients from the food they eat. If they get a lung infection it is usually staph, which they clear with just oral antibiotics. None of them have had to go on IV antibiotics yet and none of them have much, if any, permanent lung damage. All three of them do similar preventative treatments which include:

1) Pulmozyme (inhaled drug that helps to thin mucus in the lungs)
2) Advair, Symbicort or Flovent (puffer drug for asthma symptoms to help keep swelling in the bronchial tubes down and help open up the smaller bronchial tubes as well)
3) Hypertonic Saline (inhaled to help bring more moister to the lining of the lungs to help move mucus out of the lungs)
4) The Vest (vibrates the lungs to help bring out the mucus and keep the lungs clear)

My daughter is 19 years old and is doing very very well. Her Pulmonary function tests are always well over 100% (116% most of the time) She hasn't had a lung infection in a couple of years. She has only had Pseudomonas aeruginosa once when she was 15 years old and so far it has never come back. She went to college for a couple of years, she is now working a full time job + a few extra hours at her part time job and living in her own apartment. We expect for her to have a long and healthy life, get married and have kids whenever she feels like it

Marci is 30 something years old, married and has two children under the age of 6. She has only had two bouts with Pseudomonas aeruginosa (each time when she got pregnant) She too has gone quite some time without a lung infection and has not seen another Pseudomonas aeruginosa infection in many years. She works part time by choice, and is a very active mom and wife.

My son is 21 years old and just started treatments last month. We had never seen any CF symptoms before now so there was nothing to do. He most likely has the lack of vas deferins (tubes that carry the sperm out) so having children 'the normal way' will probably not be an option for him but sperm retrieval for in vitro would be. He has very little interest at this point in finding out for sure so we don't know yet. Aside from the CF, his larger issues are with Autism Spectrum Developmental Delay. My guess would be this will be more likely to cause him to not go on to having a wife or children than the CF would. But who knows! The one sure thing is change....

Anyway... my point to all this rambling on and giving examples of all three of these peoples personal lives is to let you know that yes, people with CF, grow up, go to college, work, live, have families and can live long lives. <b>I know of several people who are in their 50's 60's & even 70's now, so don't be so sure you will out live your daughter.</b> You also have the benefit of finding out sooner rather than later and you can skip right over that period of not knowing how to treat problems because nobody knows she has CF. She will benefit from getting started on the necessary preventative treatments early. I know it sucks big time to be given a diagnosis of CF - it will get easier to cope with the mental games we all play in our heads, over time. Knowledge and understanding help... stick around this website, there is a lot of information and support here.

If you have any more questions, please feel free to ask either here or though the private message feature.
***************

 

[Alyssa]

Here are some links to threads that are about the same gene mutations - I have posted on each of these.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=23505&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=1881&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=23523&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=3636&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

Also, from the first link is what I typed to that mom - see the whole thing for what she asked and what other responded, but here is a copy paste of what I had said because she was particularly concerned about the possibility of outliving her child.

*************
Please read the first entry on my blog page - my kids have the same mutations as your child. There are several other people on this site that also have those two mutations. I have become very good friends with a woman in her 30's (Marci - I think her username is marcijo) who is very similar to my daughter's presentation of CF. Below is some information about the three adults with CF that I know quite a bit about.....

Nobody can say for sure what will happen.... and all the usual disclaimers apply (everyone is different, other factors contribute to clinical outcomes, you cannot say for sure what will happen just because you have a certain gene, things can and do change rapidly) yadda yadda yadda but, having said all of that, I can tell you what I know has happened to my two kids and Marci, so you will have an idea of how things have shaped up so far. All three of these people with CF are pancreatic sufficient (something that is commonly associated with the R117H gene and helps to contribute to their overall health) They do not have any problems absorbing the nutrients from the food they eat. If they get a lung infection it is usually staph, which they clear with just oral antibiotics. None of them have had to go on IV antibiotics yet and none of them have much, if any, permanent lung damage. All three of them do similar preventative treatments which include:

1) Pulmozyme (inhaled drug that helps to thin mucus in the lungs)
2) Advair, Symbicort or Flovent (puffer drug for asthma symptoms to help keep swelling in the bronchial tubes down and help open up the smaller bronchial tubes as well)
3) Hypertonic Saline (inhaled to help bring more moister to the lining of the lungs to help move mucus out of the lungs)
4) The Vest (vibrates the lungs to help bring out the mucus and keep the lungs clear)

My daughter is 19 years old and is doing very very well. Her Pulmonary function tests are always well over 100% (116% most of the time) She hasn't had a lung infection in a couple of years. She has only had Pseudomonas aeruginosa once when she was 15 years old and so far it has never come back. She went to college for a couple of years, she is now working a full time job + a few extra hours at her part time job and living in her own apartment. We expect for her to have a long and healthy life, get married and have kids whenever she feels like it

Marci is 30 something years old, married and has two children under the age of 6. She has only had two bouts with Pseudomonas aeruginosa (each time when she got pregnant) She too has gone quite some time without a lung infection and has not seen another Pseudomonas aeruginosa infection in many years. She works part time by choice, and is a very active mom and wife.

My son is 21 years old and just started treatments last month. We had never seen any CF symptoms before now so there was nothing to do. He most likely has the lack of vas deferins (tubes that carry the sperm out) so having children 'the normal way' will probably not be an option for him but sperm retrieval for in vitro would be. He has very little interest at this point in finding out for sure so we don't know yet. Aside from the CF, his larger issues are with Autism Spectrum Developmental Delay. My guess would be this will be more likely to cause him to not go on to having a wife or children than the CF would. But who knows! The one sure thing is change....

Anyway... my point to all this rambling on and giving examples of all three of these peoples personal lives is to let you know that yes, people with CF, grow up, go to college, work, live, have families and can live long lives. <b>I know of several people who are in their 50's 60's & even 70's now, so don't be so sure you will out live your daughter.</b> You also have the benefit of finding out sooner rather than later and you can skip right over that period of not knowing how to treat problems because nobody knows she has CF. She will benefit from getting started on the necessary preventative treatments early. I know it sucks big time to be given a diagnosis of CF - it will get easier to cope with the mental games we all play in our heads, over time. Knowledge and understanding help... stick around this website, there is a lot of information and support here.

If you have any more questions, please feel free to ask either here or though the private message feature.
***************

 

[Alyssa]

Here are some links to threads that are about the same gene mutations - I have posted on each of these.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=23505&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=1881&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=23523&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=3636&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

Also, from the first link is what I typed to that mom - see the whole thing for what she asked and what other responded, but here is a copy paste of what I had said because she was particularly concerned about the possibility of outliving her child.

*************
Please read the first entry on my blog page - my kids have the same mutations as your child. There are several other people on this site that also have those two mutations. I have become very good friends with a woman in her 30's (Marci - I think her username is marcijo) who is very similar to my daughter's presentation of CF. Below is some information about the three adults with CF that I know quite a bit about.....

Nobody can say for sure what will happen.... and all the usual disclaimers apply (everyone is different, other factors contribute to clinical outcomes, you cannot say for sure what will happen just because you have a certain gene, things can and do change rapidly) yadda yadda yadda but, having said all of that, I can tell you what I know has happened to my two kids and Marci, so you will have an idea of how things have shaped up so far. All three of these people with CF are pancreatic sufficient (something that is commonly associated with the R117H gene and helps to contribute to their overall health) They do not have any problems absorbing the nutrients from the food they eat. If they get a lung infection it is usually staph, which they clear with just oral antibiotics. None of them have had to go on IV antibiotics yet and none of them have much, if any, permanent lung damage. All three of them do similar preventative treatments which include:

1) Pulmozyme (inhaled drug that helps to thin mucus in the lungs)
2) Advair, Symbicort or Flovent (puffer drug for asthma symptoms to help keep swelling in the bronchial tubes down and help open up the smaller bronchial tubes as well)
3) Hypertonic Saline (inhaled to help bring more moister to the lining of the lungs to help move mucus out of the lungs)
4) The Vest (vibrates the lungs to help bring out the mucus and keep the lungs clear)

My daughter is 19 years old and is doing very very well. Her Pulmonary function tests are always well over 100% (116% most of the time) She hasn't had a lung infection in a couple of years. She has only had Pseudomonas aeruginosa once when she was 15 years old and so far it has never come back. She went to college for a couple of years, she is now working a full time job + a few extra hours at her part time job and living in her own apartment. We expect for her to have a long and healthy life, get married and have kids whenever she feels like it

Marci is 30 something years old, married and has two children under the age of 6. She has only had two bouts with Pseudomonas aeruginosa (each time when she got pregnant) She too has gone quite some time without a lung infection and has not seen another Pseudomonas aeruginosa infection in many years. She works part time by choice, and is a very active mom and wife.

My son is 21 years old and just started treatments last month. We had never seen any CF symptoms before now so there was nothing to do. He most likely has the lack of vas deferins (tubes that carry the sperm out) so having children 'the normal way' will probably not be an option for him but sperm retrieval for in vitro would be. He has very little interest at this point in finding out for sure so we don't know yet. Aside from the CF, his larger issues are with Autism Spectrum Developmental Delay. My guess would be this will be more likely to cause him to not go on to having a wife or children than the CF would. But who knows! The one sure thing is change....

Anyway... my point to all this rambling on and giving examples of all three of these peoples personal lives is to let you know that yes, people with CF, grow up, go to college, work, live, have families and can live long lives. <b>I know of several people who are in their 50's 60's & even 70's now, so don't be so sure you will out live your daughter.</b> You also have the benefit of finding out sooner rather than later and you can skip right over that period of not knowing how to treat problems because nobody knows she has CF. She will benefit from getting started on the necessary preventative treatments early. I know it sucks big time to be given a diagnosis of CF - it will get easier to cope with the mental games we all play in our heads, over time. Knowledge and understanding help... stick around this website, there is a lot of information and support here.

If you have any more questions, please feel free to ask either here or though the private message feature.
***************

 

[Alyssa]

Here are some links to threads that are about the same gene mutations - I have posted on each of these.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=23505&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=1881&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=23523&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=3636&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

Also, from the first link is what I typed to that mom - see the whole thing for what she asked and what other responded, but here is a copy paste of what I had said because she was particularly concerned about the possibility of outliving her child.

*************
Please read the first entry on my blog page - my kids have the same mutations as your child. There are several other people on this site that also have those two mutations. I have become very good friends with a woman in her 30's (Marci - I think her username is marcijo) who is very similar to my daughter's presentation of CF. Below is some information about the three adults with CF that I know quite a bit about.....

Nobody can say for sure what will happen.... and all the usual disclaimers apply (everyone is different, other factors contribute to clinical outcomes, you cannot say for sure what will happen just because you have a certain gene, things can and do change rapidly) yadda yadda yadda but, having said all of that, I can tell you what I know has happened to my two kids and Marci, so you will have an idea of how things have shaped up so far. All three of these people with CF are pancreatic sufficient (something that is commonly associated with the R117H gene and helps to contribute to their overall health) They do not have any problems absorbing the nutrients from the food they eat. If they get a lung infection it is usually staph, which they clear with just oral antibiotics. None of them have had to go on IV antibiotics yet and none of them have much, if any, permanent lung damage. All three of them do similar preventative treatments which include:

1) Pulmozyme (inhaled drug that helps to thin mucus in the lungs)
2) Advair, Symbicort or Flovent (puffer drug for asthma symptoms to help keep swelling in the bronchial tubes down and help open up the smaller bronchial tubes as well)
3) Hypertonic Saline (inhaled to help bring more moister to the lining of the lungs to help move mucus out of the lungs)
4) The Vest (vibrates the lungs to help bring out the mucus and keep the lungs clear)

My daughter is 19 years old and is doing very very well. Her Pulmonary function tests are always well over 100% (116% most of the time) She hasn't had a lung infection in a couple of years. She has only had Pseudomonas aeruginosa once when she was 15 years old and so far it has never come back. She went to college for a couple of years, she is now working a full time job + a few extra hours at her part time job and living in her own apartment. We expect for her to have a long and healthy life, get married and have kids whenever she feels like it

Marci is 30 something years old, married and has two children under the age of 6. She has only had two bouts with Pseudomonas aeruginosa (each time when she got pregnant) She too has gone quite some time without a lung infection and has not seen another Pseudomonas aeruginosa infection in many years. She works part time by choice, and is a very active mom and wife.

My son is 21 years old and just started treatments last month. We had never seen any CF symptoms before now so there was nothing to do. He most likely has the lack of vas deferins (tubes that carry the sperm out) so having children 'the normal way' will probably not be an option for him but sperm retrieval for in vitro would be. He has very little interest at this point in finding out for sure so we don't know yet. Aside from the CF, his larger issues are with Autism Spectrum Developmental Delay. My guess would be this will be more likely to cause him to not go on to having a wife or children than the CF would. But who knows! The one sure thing is change....

Anyway... my point to all this rambling on and giving examples of all three of these peoples personal lives is to let you know that yes, people with CF, grow up, go to college, work, live, have families and can live long lives. <b>I know of several people who are in their 50's 60's & even 70's now, so don't be so sure you will out live your daughter.</b> You also have the benefit of finding out sooner rather than later and you can skip right over that period of not knowing how to treat problems because nobody knows she has CF. She will benefit from getting started on the necessary preventative treatments early. I know it sucks big time to be given a diagnosis of CF - it will get easier to cope with the mental games we all play in our heads, over time. Knowledge and understanding help... stick around this website, there is a lot of information and support here.

If you have any more questions, please feel free to ask either here or though the private message feature.
***************

 

[Alyssa]

Here are some links to threads that are about the same gene mutations - I have posted on each of these.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=23505&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=1881&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=902&threadid=23523&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=3636&highlight_key=y
">http://forums.cysticfibrosis.c...highlight_key=y
</a>

Also, from the first link is what I typed to that mom - see the whole thing for what she asked and what other responded, but here is a copy paste of what I had said because she was particularly concerned about the possibility of outliving her child.

*************
Please read the first entry on my blog page - my kids have the same mutations as your child. There are several other people on this site that also have those two mutations. I have become very good friends with a woman in her 30's (Marci - I think her username is marcijo) who is very similar to my daughter's presentation of CF. Below is some information about the three adults with CF that I know quite a bit about.....

Nobody can say for sure what will happen.... and all the usual disclaimers apply (everyone is different, other factors contribute to clinical outcomes, you cannot say for sure what will happen just because you have a certain gene, things can and do change rapidly) yadda yadda yadda but, having said all of that, I can tell you what I know has happened to my two kids and Marci, so you will have an idea of how things have shaped up so far. All three of these people with CF are pancreatic sufficient (something that is commonly associated with the R117H gene and helps to contribute to their overall health) They do not have any problems absorbing the nutrients from the food they eat. If they get a lung infection it is usually staph, which they clear with just oral antibiotics. None of them have had to go on IV antibiotics yet and none of them have much, if any, permanent lung damage. All three of them do similar preventative treatments which include:

1) Pulmozyme (inhaled drug that helps to thin mucus in the lungs)
2) Advair, Symbicort or Flovent (puffer drug for asthma symptoms to help keep swelling in the bronchial tubes down and help open up the smaller bronchial tubes as well)
3) Hypertonic Saline (inhaled to help bring more moister to the lining of the lungs to help move mucus out of the lungs)
4) The Vest (vibrates the lungs to help bring out the mucus and keep the lungs clear)

My daughter is 19 years old and is doing very very well. Her Pulmonary function tests are always well over 100% (116% most of the time) She hasn't had a lung infection in a couple of years. She has only had Pseudomonas aeruginosa once when she was 15 years old and so far it has never come back. She went to college for a couple of years, she is now working a full time job + a few extra hours at her part time job and living in her own apartment. We expect for her to have a long and healthy life, get married and have kids whenever she feels like it

Marci is 30 something years old, married and has two children under the age of 6. She has only had two bouts with Pseudomonas aeruginosa (each time when she got pregnant) She too has gone quite some time without a lung infection and has not seen another Pseudomonas aeruginosa infection in many years. She works part time by choice, and is a very active mom and wife.

My son is 21 years old and just started treatments last month. We had never seen any CF symptoms before now so there was nothing to do. He most likely has the lack of vas deferins (tubes that carry the sperm out) so having children 'the normal way' will probably not be an option for him but sperm retrieval for in vitro would be. He has very little interest at this point in finding out for sure so we don't know yet. Aside from the CF, his larger issues are with Autism Spectrum Developmental Delay. My guess would be this will be more likely to cause him to not go on to having a wife or children than the CF would. But who knows! The one sure thing is change....

Anyway... my point to all this rambling on and giving examples of all three of these peoples personal lives is to let you know that yes, people with CF, grow up, go to college, work, live, have families and can live long lives. <b>I know of several people who are in their 50's 60's & even 70's now, so don't be so sure you will out live your daughter.</b> You also have the benefit of finding out sooner rather than later and you can skip right over that period of not knowing how to treat problems because nobody knows she has CF. She will benefit from getting started on the necessary preventative treatments early. I know it sucks big time to be given a diagnosis of CF - it will get easier to cope with the mental games we all play in our heads, over time. Knowledge and understanding help... stick around this website, there is a lot of information and support here.

If you have any more questions, please feel free to ask either here or though the private message feature.
***************

 

[AbbysMama]

Jessica,

I just sent you another PM. Sorry I've been out of touch. Being pregnant and finding out this diagnosis is just totally crappy. I know.

All of the folks who have typed on here already have tremendous insight and perspective. Alyssa is a wonderful resource and Heather and I have typed many a long email at each other about CF, doctors, the works. This is a great place to get the support you need right now.

One thing I want to mention is that you have an advantage that so many CF parents don't get. You get to PREPARE. I continually reminded myself of that when I was dreading the arrival of a "sick child." That sounds worse than I meant it to, but I hope folks understand what I mean because I wouldn't trade her for anything. She's my angel and my 3 year old is my precious one.

My husband and I used the time to read, gather our questions, go to a CF clinic to see what it is all about and meet the doctors and nurses, and to get established on this site and make some friends and gain some resources. Then we knew that we had done everything we could do to get ready for Abby's arrival. Once she got here, that was the easy part. We just took care of her. We didn't have to worry about all of the stressors that come with getting a new baby AND getting this diagnosis. I just kept saying to myself that knowledge was power and it gave me the power to gain some control and get over myself and focus on the potential needs of my child.

Abby's doing great. She just started walking today. She is a normal kid with two funky genes that haven't kicked in yet. We're doing everything we can to make sure that they dont "kick in" until she's old and gray. That's our goal. We'll see what happens.

As far as the expectingcf.org website, I haven't updated it in forever because of teaching full time, keeping two little girls out of trouble, extended family pressures, graduate school and just life in general. As I update it I will let you know.

In 6 weeks you will have your bundle of joy here and you will do what you feel is best for preventative care. In the meantime, don't read too much, and don't read the depressing stuff. Your child has his whole life to live. Enjoy the part where you get to enjoy him.

Let me know if you need me.

Em

 

[AbbysMama]

Jessica,

I just sent you another PM. Sorry I've been out of touch. Being pregnant and finding out this diagnosis is just totally crappy. I know.

All of the folks who have typed on here already have tremendous insight and perspective. Alyssa is a wonderful resource and Heather and I have typed many a long email at each other about CF, doctors, the works. This is a great place to get the support you need right now.

One thing I want to mention is that you have an advantage that so many CF parents don't get. You get to PREPARE. I continually reminded myself of that when I was dreading the arrival of a "sick child." That sounds worse than I meant it to, but I hope folks understand what I mean because I wouldn't trade her for anything. She's my angel and my 3 year old is my precious one.

My husband and I used the time to read, gather our questions, go to a CF clinic to see what it is all about and meet the doctors and nurses, and to get established on this site and make some friends and gain some resources. Then we knew that we had done everything we could do to get ready for Abby's arrival. Once she got here, that was the easy part. We just took care of her. We didn't have to worry about all of the stressors that come with getting a new baby AND getting this diagnosis. I just kept saying to myself that knowledge was power and it gave me the power to gain some control and get over myself and focus on the potential needs of my child.

Abby's doing great. She just started walking today. She is a normal kid with two funky genes that haven't kicked in yet. We're doing everything we can to make sure that they dont "kick in" until she's old and gray. That's our goal. We'll see what happens.

As far as the expectingcf.org website, I haven't updated it in forever because of teaching full time, keeping two little girls out of trouble, extended family pressures, graduate school and just life in general. As I update it I will let you know.

In 6 weeks you will have your bundle of joy here and you will do what you feel is best for preventative care. In the meantime, don't read too much, and don't read the depressing stuff. Your child has his whole life to live. Enjoy the part where you get to enjoy him.

Let me know if you need me.

Em

 

[AbbysMama]

Jessica,

I just sent you another PM. Sorry I've been out of touch. Being pregnant and finding out this diagnosis is just totally crappy. I know.

All of the folks who have typed on here already have tremendous insight and perspective. Alyssa is a wonderful resource and Heather and I have typed many a long email at each other about CF, doctors, the works. This is a great place to get the support you need right now.

One thing I want to mention is that you have an advantage that so many CF parents don't get. You get to PREPARE. I continually reminded myself of that when I was dreading the arrival of a "sick child." That sounds worse than I meant it to, but I hope folks understand what I mean because I wouldn't trade her for anything. She's my angel and my 3 year old is my precious one.

My husband and I used the time to read, gather our questions, go to a CF clinic to see what it is all about and meet the doctors and nurses, and to get established on this site and make some friends and gain some resources. Then we knew that we had done everything we could do to get ready for Abby's arrival. Once she got here, that was the easy part. We just took care of her. We didn't have to worry about all of the stressors that come with getting a new baby AND getting this diagnosis. I just kept saying to myself that knowledge was power and it gave me the power to gain some control and get over myself and focus on the potential needs of my child.

Abby's doing great. She just started walking today. She is a normal kid with two funky genes that haven't kicked in yet. We're doing everything we can to make sure that they dont "kick in" until she's old and gray. That's our goal. We'll see what happens.

As far as the expectingcf.org website, I haven't updated it in forever because of teaching full time, keeping two little girls out of trouble, extended family pressures, graduate school and just life in general. As I update it I will let you know.

In 6 weeks you will have your bundle of joy here and you will do what you feel is best for preventative care. In the meantime, don't read too much, and don't read the depressing stuff. Your child has his whole life to live. Enjoy the part where you get to enjoy him.

Let me know if you need me.

Em

 

[AbbysMama]

Jessica,

I just sent you another PM. Sorry I've been out of touch. Being pregnant and finding out this diagnosis is just totally crappy. I know.

All of the folks who have typed on here already have tremendous insight and perspective. Alyssa is a wonderful resource and Heather and I have typed many a long email at each other about CF, doctors, the works. This is a great place to get the support you need right now.

One thing I want to mention is that you have an advantage that so many CF parents don't get. You get to PREPARE. I continually reminded myself of that when I was dreading the arrival of a "sick child." That sounds worse than I meant it to, but I hope folks understand what I mean because I wouldn't trade her for anything. She's my angel and my 3 year old is my precious one.

My husband and I used the time to read, gather our questions, go to a CF clinic to see what it is all about and meet the doctors and nurses, and to get established on this site and make some friends and gain some resources. Then we knew that we had done everything we could do to get ready for Abby's arrival. Once she got here, that was the easy part. We just took care of her. We didn't have to worry about all of the stressors that come with getting a new baby AND getting this diagnosis. I just kept saying to myself that knowledge was power and it gave me the power to gain some control and get over myself and focus on the potential needs of my child.

Abby's doing great. She just started walking today. She is a normal kid with two funky genes that haven't kicked in yet. We're doing everything we can to make sure that they dont "kick in" until she's old and gray. That's our goal. We'll see what happens.

As far as the expectingcf.org website, I haven't updated it in forever because of teaching full time, keeping two little girls out of trouble, extended family pressures, graduate school and just life in general. As I update it I will let you know.

In 6 weeks you will have your bundle of joy here and you will do what you feel is best for preventative care. In the meantime, don't read too much, and don't read the depressing stuff. Your child has his whole life to live. Enjoy the part where you get to enjoy him.

Let me know if you need me.

Em

 

[AbbysMama]

Jessica,

I just sent you another PM. Sorry I've been out of touch. Being pregnant and finding out this diagnosis is just totally crappy. I know.

All of the folks who have typed on here already have tremendous insight and perspective. Alyssa is a wonderful resource and Heather and I have typed many a long email at each other about CF, doctors, the works. This is a great place to get the support you need right now.

One thing I want to mention is that you have an advantage that so many CF parents don't get. You get to PREPARE. I continually reminded myself of that when I was dreading the arrival of a "sick child." That sounds worse than I meant it to, but I hope folks understand what I mean because I wouldn't trade her for anything. She's my angel and my 3 year old is my precious one.

My husband and I used the time to read, gather our questions, go to a CF clinic to see what it is all about and meet the doctors and nurses, and to get established on this site and make some friends and gain some resources. Then we knew that we had done everything we could do to get ready for Abby's arrival. Once she got here, that was the easy part. We just took care of her. We didn't have to worry about all of the stressors that come with getting a new baby AND getting this diagnosis. I just kept saying to myself that knowledge was power and it gave me the power to gain some control and get over myself and focus on the potential needs of my child.

Abby's doing great. She just started walking today. She is a normal kid with two funky genes that haven't kicked in yet. We're doing everything we can to make sure that they dont "kick in" until she's old and gray. That's our goal. We'll see what happens.

As far as the expectingcf.org website, I haven't updated it in forever because of teaching full time, keeping two little girls out of trouble, extended family pressures, graduate school and just life in general. As I update it I will let you know.

In 6 weeks you will have your bundle of joy here and you will do what you feel is best for preventative care. In the meantime, don't read too much, and don't read the depressing stuff. Your child has his whole life to live. Enjoy the part where you get to enjoy him.

Let me know if you need me.

Em

 

[braydenzmom]

I just wanted to say thank you to everyone for the warm welcome! I was a ball of emotions yesterday worrying about my "sick baby". I have those days every now and again. I am so grateful to have all of you to talk to, especially since you have all been where I am going. It's getting closer to his arrival & I'm becoming more & more excited. The doctors say he is a "big baby"...already 5 1/2 pounds! And I still have another 5 weeks or so left. My perinatologist said his bowels look normal, and as of right now she is not concerned about the blockage issue. I hope that carries through delivery. I am so much more hopeful after reading all of your responses and again I want to thank you all! I am looking very forward to speaking with all of you in the near future!

 

[braydenzmom]

I just wanted to say thank you to everyone for the warm welcome! I was a ball of emotions yesterday worrying about my "sick baby". I have those days every now and again. I am so grateful to have all of you to talk to, especially since you have all been where I am going. It's getting closer to his arrival & I'm becoming more & more excited. The doctors say he is a "big baby"...already 5 1/2 pounds! And I still have another 5 weeks or so left. My perinatologist said his bowels look normal, and as of right now she is not concerned about the blockage issue. I hope that carries through delivery. I am so much more hopeful after reading all of your responses and again I want to thank you all! I am looking very forward to speaking with all of you in the near future!

 

[braydenzmom]

I just wanted to say thank you to everyone for the warm welcome! I was a ball of emotions yesterday worrying about my "sick baby". I have those days every now and again. I am so grateful to have all of you to talk to, especially since you have all been where I am going. It's getting closer to his arrival & I'm becoming more & more excited. The doctors say he is a "big baby"...already 5 1/2 pounds! And I still have another 5 weeks or so left. My perinatologist said his bowels look normal, and as of right now she is not concerned about the blockage issue. I hope that carries through delivery. I am so much more hopeful after reading all of your responses and again I want to thank you all! I am looking very forward to speaking with all of you in the near future!

 

[braydenzmom]

I just wanted to say thank you to everyone for the warm welcome! I was a ball of emotions yesterday worrying about my "sick baby". I have those days every now and again. I am so grateful to have all of you to talk to, especially since you have all been where I am going. It's getting closer to his arrival & I'm becoming more & more excited. The doctors say he is a "big baby"...already 5 1/2 pounds! And I still have another 5 weeks or so left. My perinatologist said his bowels look normal, and as of right now she is not concerned about the blockage issue. I hope that carries through delivery. I am so much more hopeful after reading all of your responses and again I want to thank you all! I am looking very forward to speaking with all of you in the near future!

 

[braydenzmom]

I just wanted to say thank you to everyone for the warm welcome! I was a ball of emotions yesterday worrying about my "sick baby". I have those days every now and again. I am so grateful to have all of you to talk to, especially since you have all been where I am going. It's getting closer to his arrival & I'm becoming more & more excited. The doctors say he is a "big baby"...already 5 1/2 pounds! And I still have another 5 weeks or so left. My perinatologist said his bowels look normal, and as of right now she is not concerned about the blockage issue. I hope that carries through delivery. I am so much more hopeful after reading all of your responses and again I want to thank you all! I am looking very forward to speaking with all of you in the near future!