44/43 sweat test results.......lots of questions???????

[BlessedbymyGirl36]

Hi, today is my first day on the forum but I would just like to say that the fact that your child is in the hands of people with answers and medicines that will make your child and your families lifes so much easier and more full. My daughter Erin Joan is 11 (going on 21) and was diagnosed at 17 months. She had two sweat tests that were right below borderline but finally when in the hospital for a bad cold, her pediatrician had her transferred to UMass medical. Her tests there were confirmed. I remember thinking that night that i would trade anything to have this and not her. Needless to say one week later her vomiting had stopped (creon) and she had gained 6lbs. Her doctor said i wouldnt recognize her in 3 monts and he was right. She is a healthy wonderful spirit, who with around 1 clean out a year (just came out of 2wk hospital stay this month). This disease has made my daughter a stronger human being, she sees life differently because of what she deals with. My 14yr old son is a carrier and my year old son is completley clean. I believe God gives us things in this life always for a reason. Her disease has made me a stronger woman and better mother. GOOD LUCK in the beginning of this journey, and please keep in mind all the small things (sickness) your child has had to deal with as well as the stress on you. If diagnosed, you are on the road to a healthier child. (I know sounds backwards) but it's true. God Bless, Nichole

 

[BlessedbymyGirl36]

Hi, today is my first day on the forum but I would just like to say that the fact that your child is in the hands of people with answers and medicines that will make your child and your families lifes so much easier and more full. My daughter Erin Joan is 11 (going on 21) and was diagnosed at 17 months. She had two sweat tests that were right below borderline but finally when in the hospital for a bad cold, her pediatrician had her transferred to UMass medical. Her tests there were confirmed. I remember thinking that night that i would trade anything to have this and not her. Needless to say one week later her vomiting had stopped (creon) and she had gained 6lbs. Her doctor said i wouldnt recognize her in 3 monts and he was right. She is a healthy wonderful spirit, who with around 1 clean out a year (just came out of 2wk hospital stay this month). This disease has made my daughter a stronger human being, she sees life differently because of what she deals with. My 14yr old son is a carrier and my year old son is completley clean. I believe God gives us things in this life always for a reason. Her disease has made me a stronger woman and better mother. GOOD LUCK in the beginning of this journey, and please keep in mind all the small things (sickness) your child has had to deal with as well as the stress on you. If diagnosed, you are on the road to a healthier child. (I know sounds backwards) but it's true. God Bless, Nichole

 

[BlessedbymyGirl36]

Hi, today is my first day on the forum but I would just like to say that the fact that your child is in the hands of people with answers and medicines that will make your child and your families lifes so much easier and more full. My daughter Erin Joan is 11 (going on 21) and was diagnosed at 17 months. She had two sweat tests that were right below borderline but finally when in the hospital for a bad cold, her pediatrician had her transferred to UMass medical. Her tests there were confirmed. I remember thinking that night that i would trade anything to have this and not her. Needless to say one week later her vomiting had stopped (creon) and she had gained 6lbs. Her doctor said i wouldnt recognize her in 3 monts and he was right. She is a healthy wonderful spirit, who with around 1 clean out a year (just came out of 2wk hospital stay this month). This disease has made my daughter a stronger human being, she sees life differently because of what she deals with. My 14yr old son is a carrier and my year old son is completley clean. I believe God gives us things in this life always for a reason. Her disease has made me a stronger woman and better mother. GOOD LUCK in the beginning of this journey, and please keep in mind all the small things (sickness) your child has had to deal with as well as the stress on you. If diagnosed, you are on the road to a healthier child. (I know sounds backwards) but it's true. God Bless, Nichole

 

[clawson5104]

thanks for ur replies........i guess i am confused about this whole thing,,,,, tests,,,,etc. i am not even sure if my son has cf, only that he has one mutation and a load of symptoms (although not nearly as severe as some of the stories i read on here daily) and that he is gonna be treated "as if" he does have it. i just dont know what to tell my older boys,, and explaining this to hubby and family members isn't easy considering i dont understand it myself...lol.
i donno if he does have it with one mutation and other unknown like some people.......or if he is only a carrier and we are waiting to see what happens with the other tests....guess so. i donno. i just wanna know for sure and what to expect is what i'm trying to say,, and what all these results mean. i am seeing the pediatrician tomorrow. wade has been sick alot and is behind on some vaccinations,,, so we are getting caught up on those before he gets sick again. and he said he would look over the tests and may be able to clarify them to some extent. this is sooooo frustrating. i thought once we had the test back we would be done with the waiting and wondering.......i am not sure now. but i am reading and learning everything i can to help him either way. i appreciate the support, and info from everybody........carrie

mom of 4 boys....... youngest Wade 22 mos. possible cf.

 

[clawson5104]

thanks for ur replies........i guess i am confused about this whole thing,,,,, tests,,,,etc. i am not even sure if my son has cf, only that he has one mutation and a load of symptoms (although not nearly as severe as some of the stories i read on here daily) and that he is gonna be treated "as if" he does have it. i just dont know what to tell my older boys,, and explaining this to hubby and family members isn't easy considering i dont understand it myself...lol.
i donno if he does have it with one mutation and other unknown like some people.......or if he is only a carrier and we are waiting to see what happens with the other tests....guess so. i donno. i just wanna know for sure and what to expect is what i'm trying to say,, and what all these results mean. i am seeing the pediatrician tomorrow. wade has been sick alot and is behind on some vaccinations,,, so we are getting caught up on those before he gets sick again. and he said he would look over the tests and may be able to clarify them to some extent. this is sooooo frustrating. i thought once we had the test back we would be done with the waiting and wondering.......i am not sure now. but i am reading and learning everything i can to help him either way. i appreciate the support, and info from everybody........carrie

mom of 4 boys....... youngest Wade 22 mos. possible cf.

 

[clawson5104]

thanks for ur replies........i guess i am confused about this whole thing,,,,, tests,,,,etc. i am not even sure if my son has cf, only that he has one mutation and a load of symptoms (although not nearly as severe as some of the stories i read on here daily) and that he is gonna be treated "as if" he does have it. i just dont know what to tell my older boys,, and explaining this to hubby and family members isn't easy considering i dont understand it myself...lol.
i donno if he does have it with one mutation and other unknown like some people.......or if he is only a carrier and we are waiting to see what happens with the other tests....guess so. i donno. i just wanna know for sure and what to expect is what i'm trying to say,, and what all these results mean. i am seeing the pediatrician tomorrow. wade has been sick alot and is behind on some vaccinations,,, so we are getting caught up on those before he gets sick again. and he said he would look over the tests and may be able to clarify them to some extent. this is sooooo frustrating. i thought once we had the test back we would be done with the waiting and wondering.......i am not sure now. but i am reading and learning everything i can to help him either way. i appreciate the support, and info from everybody........carrie

mom of 4 boys....... youngest Wade 22 mos. possible cf.

 

[BlessedbymyGirl36]

Carrie,
I can't even imagine having to live in limbo with my child sick. What is coming to me though, is what is taking so long for these doctors to diagnose him. It has to be frustrating. I think that Tim (husband) and I were very blessed to have seen a few cases of CF. And when we were given into another doc's hands, him and his team are well known in the CF community. We are definately blessed, I see that even more now. I guess what you have to do is nothing more than what you are doing. No one can say "Don't stress", or "Think the best until you know more", because this is your child, helplessness is not a good state of being, and i'm guessing with a tad of pissed off your feeling that. Once you have an answer either way, your life will be different. You'll have grown stronger for getting your family through this and know he's fine, just sick sometimes, or you will know you have a beautiful child with a chronic illness. Once they get their heads on straight and find out what is going on, IF he is CF positive, you will have access to medications that will get him better. And in seeing him get better you wil find "some sort of relief". My daughter is 11 and is one of the fortunate. she has never had a problem gaining weight, she is in the 96% for her weight and she only really gets sick once a year (hospital stay). I've seen much worse and I've heard of only having one or two organs involved. Just take a moment get a deep breath and use whatever support/faith you have to get you to the next step.
God Bless Carrie and email me with any questions <img src="i/expressions/face-icon-small-blush.gif" border="0">) Nichole brownikinne@aol.com

 

[BlessedbymyGirl36]

Carrie,
I can't even imagine having to live in limbo with my child sick. What is coming to me though, is what is taking so long for these doctors to diagnose him. It has to be frustrating. I think that Tim (husband) and I were very blessed to have seen a few cases of CF. And when we were given into another doc's hands, him and his team are well known in the CF community. We are definately blessed, I see that even more now. I guess what you have to do is nothing more than what you are doing. No one can say "Don't stress", or "Think the best until you know more", because this is your child, helplessness is not a good state of being, and i'm guessing with a tad of pissed off your feeling that. Once you have an answer either way, your life will be different. You'll have grown stronger for getting your family through this and know he's fine, just sick sometimes, or you will know you have a beautiful child with a chronic illness. Once they get their heads on straight and find out what is going on, IF he is CF positive, you will have access to medications that will get him better. And in seeing him get better you wil find "some sort of relief". My daughter is 11 and is one of the fortunate. she has never had a problem gaining weight, she is in the 96% for her weight and she only really gets sick once a year (hospital stay). I've seen much worse and I've heard of only having one or two organs involved. Just take a moment get a deep breath and use whatever support/faith you have to get you to the next step.
God Bless Carrie and email me with any questions <img src="i/expressions/face-icon-small-blush.gif" border="0">) Nichole brownikinne@aol.com

 

[BlessedbymyGirl36]

Carrie,
I can't even imagine having to live in limbo with my child sick. What is coming to me though, is what is taking so long for these doctors to diagnose him. It has to be frustrating. I think that Tim (husband) and I were very blessed to have seen a few cases of CF. And when we were given into another doc's hands, him and his team are well known in the CF community. We are definately blessed, I see that even more now. I guess what you have to do is nothing more than what you are doing. No one can say "Don't stress", or "Think the best until you know more", because this is your child, helplessness is not a good state of being, and i'm guessing with a tad of pissed off your feeling that. Once you have an answer either way, your life will be different. You'll have grown stronger for getting your family through this and know he's fine, just sick sometimes, or you will know you have a beautiful child with a chronic illness. Once they get their heads on straight and find out what is going on, IF he is CF positive, you will have access to medications that will get him better. And in seeing him get better you wil find "some sort of relief". My daughter is 11 and is one of the fortunate. she has never had a problem gaining weight, she is in the 96% for her weight and she only really gets sick once a year (hospital stay). I've seen much worse and I've heard of only having one or two organs involved. Just take a moment get a deep breath and use whatever support/faith you have to get you to the next step.
God Bless Carrie and email me with any questions <img src="i/expressions/face-icon-small-blush.gif" border="0">) Nichole brownikinne@aol.com

 

[clawson5104]

thanks a bunch nichole! i am very blessed, and very very thankful for my boys and hubby. i remember life before them, not necessarily a nightmare but this is my dream come true. i am not devastated (like my husband) at the possibility of wade having cf..........it could be much worse is how i see it. i know there are horrible stories of pain and suffering with cf.....but there's treatment to help maintain quality of life.....unlike what parents go thru when their kids have cancers........they can fight it and try to treat it....but with the possiblity of it returning and returning worse......or never able to fight it off. at least with cf u know there's alot downs and yet some ups too. there's help and experience and alot of knowledge. cancer has too many suprises. my family has ALOT of cancer in it. (my mom died the morning we learned 100% sure it was cancer.....and we never knew only suspected it started in her liver) and yet my grandma lived with it for 15 yrs...my aunt has it now and lost her breasts and is receiving treatment.. my mother in law lost upper lobe of L lung....3 top ribs....collar bone....a nerve to her voice box.....and i donno how many lymph nodes in october......and is going thru treatments....now has two suspicious spots on her spine and shoulder.......so u just never know. i am very thankful,, and i am a firm believer that yes there are moments where we all wear down from chasing kids and keeping up with chores, errands, etc.....let alone illnesses......but i believe in Jesus and God.....i may not live right...but i believe it,, and i know He only gives us what we can handle. so somehow......my family and i will pull thru whatever lies ahead.........just in the meantime......i am glad the pulmonologist is being aggressive in treatment........i just wanna know for sure either way. so i know what i am dealing with.....and what about my other 3 boys. sorry for making this sooooo long.....i usually only have conversations between the ages of 22mos to 10yrs old.....lol. and i don't get out much unless its the pharmacy or dr. office...lol. so thanks again......carrie

 

[clawson5104]

thanks a bunch nichole! i am very blessed, and very very thankful for my boys and hubby. i remember life before them, not necessarily a nightmare but this is my dream come true. i am not devastated (like my husband) at the possibility of wade having cf..........it could be much worse is how i see it. i know there are horrible stories of pain and suffering with cf.....but there's treatment to help maintain quality of life.....unlike what parents go thru when their kids have cancers........they can fight it and try to treat it....but with the possiblity of it returning and returning worse......or never able to fight it off. at least with cf u know there's alot downs and yet some ups too. there's help and experience and alot of knowledge. cancer has too many suprises. my family has ALOT of cancer in it. (my mom died the morning we learned 100% sure it was cancer.....and we never knew only suspected it started in her liver) and yet my grandma lived with it for 15 yrs...my aunt has it now and lost her breasts and is receiving treatment.. my mother in law lost upper lobe of L lung....3 top ribs....collar bone....a nerve to her voice box.....and i donno how many lymph nodes in october......and is going thru treatments....now has two suspicious spots on her spine and shoulder.......so u just never know. i am very thankful,, and i am a firm believer that yes there are moments where we all wear down from chasing kids and keeping up with chores, errands, etc.....let alone illnesses......but i believe in Jesus and God.....i may not live right...but i believe it,, and i know He only gives us what we can handle. so somehow......my family and i will pull thru whatever lies ahead.........just in the meantime......i am glad the pulmonologist is being aggressive in treatment........i just wanna know for sure either way. so i know what i am dealing with.....and what about my other 3 boys. sorry for making this sooooo long.....i usually only have conversations between the ages of 22mos to 10yrs old.....lol. and i don't get out much unless its the pharmacy or dr. office...lol. so thanks again......carrie

 

[clawson5104]

thanks a bunch nichole! i am very blessed, and very very thankful for my boys and hubby. i remember life before them, not necessarily a nightmare but this is my dream come true. i am not devastated (like my husband) at the possibility of wade having cf..........it could be much worse is how i see it. i know there are horrible stories of pain and suffering with cf.....but there's treatment to help maintain quality of life.....unlike what parents go thru when their kids have cancers........they can fight it and try to treat it....but with the possiblity of it returning and returning worse......or never able to fight it off. at least with cf u know there's alot downs and yet some ups too. there's help and experience and alot of knowledge. cancer has too many suprises. my family has ALOT of cancer in it. (my mom died the morning we learned 100% sure it was cancer.....and we never knew only suspected it started in her liver) and yet my grandma lived with it for 15 yrs...my aunt has it now and lost her breasts and is receiving treatment.. my mother in law lost upper lobe of L lung....3 top ribs....collar bone....a nerve to her voice box.....and i donno how many lymph nodes in october......and is going thru treatments....now has two suspicious spots on her spine and shoulder.......so u just never know. i am very thankful,, and i am a firm believer that yes there are moments where we all wear down from chasing kids and keeping up with chores, errands, etc.....let alone illnesses......but i believe in Jesus and God.....i may not live right...but i believe it,, and i know He only gives us what we can handle. so somehow......my family and i will pull thru whatever lies ahead.........just in the meantime......i am glad the pulmonologist is being aggressive in treatment........i just wanna know for sure either way. so i know what i am dealing with.....and what about my other 3 boys. sorry for making this sooooo long.....i usually only have conversations between the ages of 22mos to 10yrs old.....lol. and i don't get out much unless its the pharmacy or dr. office...lol. so thanks again......carrie

 

[BlessedbymyGirl36]

Carrie,
I so know how you feel about the "adult conversation" thing, up until 4 years ago when i volunteered to be a Sunday school teacher at our church (now director) my days consisted of talking to the characters on disney or nick jr. and I swear they almost started talking back! I admire and respect your courage and positive outlook so much, our faith can pull us through so much. I can't believe what you have gone through in your family. My Nana died from liver/lung cancer, and my Mom just finished up chemo and radiation (60yrs) 3 weeks ago. Now that I'm 36 I think about it more and more. Then I look at Erin and just take it a day at at ime. It's funny because even though i'm the director i catch myself saying "and i'm a Sunday school teacher!!" because beleive you me, i'm not perfect, far from it...but then I give myself some credit because I'm human lol and that right there throws a wrench in perfection <img src="i/expressions/face-icon-small-smile.gif" border="0"> My husband took it much harder as well. I think it's because they feel like they have to protect us all from everything, and if something goes wrong and they can't "fix" it they feel the guilt/anger. When Erin went in for a clean out (10 days in hospital, 5 days home I.V.) this time I checked her in and stayed te first night by myself. Usually we both go, but Jake in Kindergarten now there was just no way. Her hospital is 45 minutes away. I'll tell you even though she has been diagnosed for almost 10 years it was still new in some ways, I think it's because of her getting older.
I'm sorry if i seem to be all over the place this morning ive not had my morning cup of coffee. lol If you have any questions or just want to talk to someone over 3 ft. tall, i'm happy to oblige lol. Have a great day Carrie and I hope you find something more out soon. What state are you in? I'm originally from Santa Barbara CA , but now reside (14yrs) in Massachusettes. Take Care, Nichole

 

[BlessedbymyGirl36]

Carrie,
I so know how you feel about the "adult conversation" thing, up until 4 years ago when i volunteered to be a Sunday school teacher at our church (now director) my days consisted of talking to the characters on disney or nick jr. and I swear they almost started talking back! I admire and respect your courage and positive outlook so much, our faith can pull us through so much. I can't believe what you have gone through in your family. My Nana died from liver/lung cancer, and my Mom just finished up chemo and radiation (60yrs) 3 weeks ago. Now that I'm 36 I think about it more and more. Then I look at Erin and just take it a day at at ime. It's funny because even though i'm the director i catch myself saying "and i'm a Sunday school teacher!!" because beleive you me, i'm not perfect, far from it...but then I give myself some credit because I'm human lol and that right there throws a wrench in perfection <img src="i/expressions/face-icon-small-smile.gif" border="0"> My husband took it much harder as well. I think it's because they feel like they have to protect us all from everything, and if something goes wrong and they can't "fix" it they feel the guilt/anger. When Erin went in for a clean out (10 days in hospital, 5 days home I.V.) this time I checked her in and stayed te first night by myself. Usually we both go, but Jake in Kindergarten now there was just no way. Her hospital is 45 minutes away. I'll tell you even though she has been diagnosed for almost 10 years it was still new in some ways, I think it's because of her getting older.
I'm sorry if i seem to be all over the place this morning ive not had my morning cup of coffee. lol If you have any questions or just want to talk to someone over 3 ft. tall, i'm happy to oblige lol. Have a great day Carrie and I hope you find something more out soon. What state are you in? I'm originally from Santa Barbara CA , but now reside (14yrs) in Massachusettes. Take Care, Nichole

 

[BlessedbymyGirl36]

Carrie,
I so know how you feel about the "adult conversation" thing, up until 4 years ago when i volunteered to be a Sunday school teacher at our church (now director) my days consisted of talking to the characters on disney or nick jr. and I swear they almost started talking back! I admire and respect your courage and positive outlook so much, our faith can pull us through so much. I can't believe what you have gone through in your family. My Nana died from liver/lung cancer, and my Mom just finished up chemo and radiation (60yrs) 3 weeks ago. Now that I'm 36 I think about it more and more. Then I look at Erin and just take it a day at at ime. It's funny because even though i'm the director i catch myself saying "and i'm a Sunday school teacher!!" because beleive you me, i'm not perfect, far from it...but then I give myself some credit because I'm human lol and that right there throws a wrench in perfection <img src="i/expressions/face-icon-small-smile.gif" border="0"> My husband took it much harder as well. I think it's because they feel like they have to protect us all from everything, and if something goes wrong and they can't "fix" it they feel the guilt/anger. When Erin went in for a clean out (10 days in hospital, 5 days home I.V.) this time I checked her in and stayed te first night by myself. Usually we both go, but Jake in Kindergarten now there was just no way. Her hospital is 45 minutes away. I'll tell you even though she has been diagnosed for almost 10 years it was still new in some ways, I think it's because of her getting older.
I'm sorry if i seem to be all over the place this morning ive not had my morning cup of coffee. lol If you have any questions or just want to talk to someone over 3 ft. tall, i'm happy to oblige lol. Have a great day Carrie and I hope you find something more out soon. What state are you in? I'm originally from Santa Barbara CA , but now reside (14yrs) in Massachusettes. Take Care, Nichole

 

[clawson5104]

hi again!!! i am so happy getting ur reply. i dont feel as insane i think..lol. i am in west virginia. i agree with u on the hubby thing. i still dont understand everything but i am beginning to understand the mutation thing thanks to steve from ambry. from what i can gather the R117H by itself is one thing. but since he has 5T variant, the variant acts like a mild mutation also. so it's causing him to have cf symptoms with those alone. i just thought after genetic testing it would be more clear cut than it seems to be. but since he has one mutation and the 5T it's like having 2 mild mutations i suppose. i read that this mutation mainly is associated w/ pancreatic problems though.....he has respiratory and the pancreatic part is still under testing. so i donno if there is an unknown mutation or what. so i'm just figuring, they're treating him for cf regardless, because of symptoms....and tests........and i will treat him as though he HAS been diagnosed. well, my 4yr old is demanding his turn on the computer....so talk to u later. thanks for everything......carrie

 

[clawson5104]

hi again!!! i am so happy getting ur reply. i dont feel as insane i think..lol. i am in west virginia. i agree with u on the hubby thing. i still dont understand everything but i am beginning to understand the mutation thing thanks to steve from ambry. from what i can gather the R117H by itself is one thing. but since he has 5T variant, the variant acts like a mild mutation also. so it's causing him to have cf symptoms with those alone. i just thought after genetic testing it would be more clear cut than it seems to be. but since he has one mutation and the 5T it's like having 2 mild mutations i suppose. i read that this mutation mainly is associated w/ pancreatic problems though.....he has respiratory and the pancreatic part is still under testing. so i donno if there is an unknown mutation or what. so i'm just figuring, they're treating him for cf regardless, because of symptoms....and tests........and i will treat him as though he HAS been diagnosed. well, my 4yr old is demanding his turn on the computer....so talk to u later. thanks for everything......carrie

 

[clawson5104]

hi again!!! i am so happy getting ur reply. i dont feel as insane i think..lol. i am in west virginia. i agree with u on the hubby thing. i still dont understand everything but i am beginning to understand the mutation thing thanks to steve from ambry. from what i can gather the R117H by itself is one thing. but since he has 5T variant, the variant acts like a mild mutation also. so it's causing him to have cf symptoms with those alone. i just thought after genetic testing it would be more clear cut than it seems to be. but since he has one mutation and the 5T it's like having 2 mild mutations i suppose. i read that this mutation mainly is associated w/ pancreatic problems though.....he has respiratory and the pancreatic part is still under testing. so i donno if there is an unknown mutation or what. so i'm just figuring, they're treating him for cf regardless, because of symptoms....and tests........and i will treat him as though he HAS been diagnosed. well, my 4yr old is demanding his turn on the computer....so talk to u later. thanks for everything......carrie

 

[BlessedbymyGirl36]

Carrie,
Isn't it amazing how much you learn from looking things up. I don't know why but the only thing I ever knew about Erin (technically) when she was diagnosed was her sweat score which was in the 60's i believe, maybe it was the way the doctor brought us into the disease, it was more how we could adjust and she would be healthy than technical. Although I'm assuming it's because there wasn't a delay in finding out information as well. I know that as of yet she hasnt tested for the pseudemonis (sp on that) bacteria. They say she probably has it but each time they test it's negative, and she doesnt get "very" sick that often at all, so who knows. When we go into the hospital Erin has student nurses (since she was a baby) and she shows them how to run the pump and flush the I.V. at 11! <img src="i/expressions/face-icon-small-blush.gif" border="0">) My hard part as a parent that I am coming to is with her getting older she is going to find out more about her disease. She knows there isnt a cure and that people pass from it, however she does'nt know it's "terminal" or the average life span. I've kept that from her for as long as possible, she'll have enough time to stress on it for the rest of her life. I think I will ask some opinions on here as to how to deal with that, without scaring the beggeeezzes out of her. I showed her parts of this website and the area for kids and she really loved it, but I don't want her wandering around. Okay well time for a shower while jake is in school for a wopping 3 hours!! Take care xNichole

 

[BlessedbymyGirl36]

Carrie,
Isn't it amazing how much you learn from looking things up. I don't know why but the only thing I ever knew about Erin (technically) when she was diagnosed was her sweat score which was in the 60's i believe, maybe it was the way the doctor brought us into the disease, it was more how we could adjust and she would be healthy than technical. Although I'm assuming it's because there wasn't a delay in finding out information as well. I know that as of yet she hasnt tested for the pseudemonis (sp on that) bacteria. They say she probably has it but each time they test it's negative, and she doesnt get "very" sick that often at all, so who knows. When we go into the hospital Erin has student nurses (since she was a baby) and she shows them how to run the pump and flush the I.V. at 11! <img src="i/expressions/face-icon-small-blush.gif" border="0">) My hard part as a parent that I am coming to is with her getting older she is going to find out more about her disease. She knows there isnt a cure and that people pass from it, however she does'nt know it's "terminal" or the average life span. I've kept that from her for as long as possible, she'll have enough time to stress on it for the rest of her life. I think I will ask some opinions on here as to how to deal with that, without scaring the beggeeezzes out of her. I showed her parts of this website and the area for kids and she really loved it, but I don't want her wandering around. Okay well time for a shower while jake is in school for a wopping 3 hours!! Take care xNichole