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READ ME: a challenge to the board
- Thread starter monkey
- Start date
PinkRaysOfSunshine
New member
... the best thing that has happened to us lately is arionna getting a new nebulizer (compresser thingie) some how the prescriptions got mixed up..... we were on our way home from a long 2 week stay in the hospital and the pharmacy called and said that they needed a hard copy of the script faxed and we couldnt get ahold of sissys cf team.. so her daddy called her pediatrician and got him to write a script for one..... well he wrote a script for the WRONG KINDA it was taking tobi 30 to 40 minutes to nebulize.. plus her daily beatings! lol. can u imagine holding down a 9 month old for that long? ANYWAYS...... her insurance wouldnt cover a new one..... and we absolutely couldnt afford it..... i dont work.. im a single mother.. .. were broke.. so her FABULOUS team worked like dogs to pull strings here and there and everywhere.. and got her one for free... =) ive always really appreciated them.. but never this much......... i was rackin my brain tryin to think of how i was gonna come up with the money for a new one..... who i could bum off of . or what i could sell lol and they just.. took care of everything for me...... they really honestly CARE........ i mean .. really really really care about arionna............ and that means the world...... in addition to be FANTASTIC doctors.. their really nice too =) i couldnt ask for a better team to be helping me care for my beautiful lil girl........ i told them thank you til i was blue in the face... lol but i know i still owe em ... big time...... if that aint positive i dont know what is... it sure was positive for me... i cried i was so happy..... lol
PinkRaysOfSunshine
New member
... the best thing that has happened to us lately is arionna getting a new nebulizer (compresser thingie) some how the prescriptions got mixed up..... we were on our way home from a long 2 week stay in the hospital and the pharmacy called and said that they needed a hard copy of the script faxed and we couldnt get ahold of sissys cf team.. so her daddy called her pediatrician and got him to write a script for one..... well he wrote a script for the WRONG KINDA it was taking tobi 30 to 40 minutes to nebulize.. plus her daily beatings! lol. can u imagine holding down a 9 month old for that long? ANYWAYS...... her insurance wouldnt cover a new one..... and we absolutely couldnt afford it..... i dont work.. im a single mother.. .. were broke.. so her FABULOUS team worked like dogs to pull strings here and there and everywhere.. and got her one for free... =) ive always really appreciated them.. but never this much......... i was rackin my brain tryin to think of how i was gonna come up with the money for a new one..... who i could bum off of . or what i could sell lol and they just.. took care of everything for me...... they really honestly CARE........ i mean .. really really really care about arionna............ and that means the world...... in addition to be FANTASTIC doctors.. their really nice too =) i couldnt ask for a better team to be helping me care for my beautiful lil girl........ i told them thank you til i was blue in the face... lol but i know i still owe em ... big time...... if that aint positive i dont know what is... it sure was positive for me... i cried i was so happy..... lol
PinkRaysOfSunshine
New member
... the best thing that has happened to us lately is arionna getting a new nebulizer (compresser thingie) some how the prescriptions got mixed up..... we were on our way home from a long 2 week stay in the hospital and the pharmacy called and said that they needed a hard copy of the script faxed and we couldnt get ahold of sissys cf team.. so her daddy called her pediatrician and got him to write a script for one..... well he wrote a script for the WRONG KINDA it was taking tobi 30 to 40 minutes to nebulize.. plus her daily beatings! lol. can u imagine holding down a 9 month old for that long? ANYWAYS...... her insurance wouldnt cover a new one..... and we absolutely couldnt afford it..... i dont work.. im a single mother.. .. were broke.. so her FABULOUS team worked like dogs to pull strings here and there and everywhere.. and got her one for free... =) ive always really appreciated them.. but never this much......... i was rackin my brain tryin to think of how i was gonna come up with the money for a new one..... who i could bum off of . or what i could sell lol and they just.. took care of everything for me...... they really honestly CARE........ i mean .. really really really care about arionna............ and that means the world...... in addition to be FANTASTIC doctors.. their really nice too =) i couldnt ask for a better team to be helping me care for my beautiful lil girl........ i told them thank you til i was blue in the face... lol but i know i still owe em ... big time...... if that aint positive i dont know what is... it sure was positive for me... i cried i was so happy..... lol
My husband and I agree that cf has made me the wonderful, kind, organized, positive, go getter (okay hard headed) person that I am today. He's even gone to the extent to say that he doesn't know if he would have fallen for me if I hadn't had cf because we both think I might have been a brat. Not that he knew I had cf right away but that it made me the person I am that he fell in love with. He's no dummy either. This man has his PhD in organic chemistry and is currently working on a drug that is showing therapy for the treatment of MRSA. We would both give up cf in a heartbeat if a cure came our way...but in the meantime, no self-pity here by us. We're enjoying the ride.
My husband and I agree that cf has made me the wonderful, kind, organized, positive, go getter (okay hard headed) person that I am today. He's even gone to the extent to say that he doesn't know if he would have fallen for me if I hadn't had cf because we both think I might have been a brat. Not that he knew I had cf right away but that it made me the person I am that he fell in love with. He's no dummy either. This man has his PhD in organic chemistry and is currently working on a drug that is showing therapy for the treatment of MRSA. We would both give up cf in a heartbeat if a cure came our way...but in the meantime, no self-pity here by us. We're enjoying the ride.
My husband and I agree that cf has made me the wonderful, kind, organized, positive, go getter (okay hard headed) person that I am today. He's even gone to the extent to say that he doesn't know if he would have fallen for me if I hadn't had cf because we both think I might have been a brat. Not that he knew I had cf right away but that it made me the person I am that he fell in love with. He's no dummy either. This man has his PhD in organic chemistry and is currently working on a drug that is showing therapy for the treatment of MRSA. We would both give up cf in a heartbeat if a cure came our way...but in the meantime, no self-pity here by us. We're enjoying the ride.
Hiya,
I have two daughters, eldest is 5 and youngest is 3. Youngest daughter has CF and was diagnosed when she was 6 weeks old on screening. I call her little monkey frequently! She is absoultely amazing. I try and stay positive every day, but it is hard - I'm sure you know what I mean. I'm not going to say too much at this point because I also don't like tempting fate. Anyway, she is a good little girl, most of the time! She is still going through terrible twos even though she is now three. She is our little angel, (and also her big sister). We love her loads and wouldn't change her for the world. I believe since my daughters were born, I am a different person, and look at the world differently. There is nothing in this world that I love more than my two kids and am thankful every day because they are beautiful.
Have a good Christmas and a Happy New Year.<img src="i/expressions/rose.gif" border="0">
I have two daughters, eldest is 5 and youngest is 3. Youngest daughter has CF and was diagnosed when she was 6 weeks old on screening. I call her little monkey frequently! She is absoultely amazing. I try and stay positive every day, but it is hard - I'm sure you know what I mean. I'm not going to say too much at this point because I also don't like tempting fate. Anyway, she is a good little girl, most of the time! She is still going through terrible twos even though she is now three. She is our little angel, (and also her big sister). We love her loads and wouldn't change her for the world. I believe since my daughters were born, I am a different person, and look at the world differently. There is nothing in this world that I love more than my two kids and am thankful every day because they are beautiful.
Have a good Christmas and a Happy New Year.<img src="i/expressions/rose.gif" border="0">
Hiya,
I have two daughters, eldest is 5 and youngest is 3. Youngest daughter has CF and was diagnosed when she was 6 weeks old on screening. I call her little monkey frequently! She is absoultely amazing. I try and stay positive every day, but it is hard - I'm sure you know what I mean. I'm not going to say too much at this point because I also don't like tempting fate. Anyway, she is a good little girl, most of the time! She is still going through terrible twos even though she is now three. She is our little angel, (and also her big sister). We love her loads and wouldn't change her for the world. I believe since my daughters were born, I am a different person, and look at the world differently. There is nothing in this world that I love more than my two kids and am thankful every day because they are beautiful.
Have a good Christmas and a Happy New Year.<img src="i/expressions/rose.gif" border="0">
I have two daughters, eldest is 5 and youngest is 3. Youngest daughter has CF and was diagnosed when she was 6 weeks old on screening. I call her little monkey frequently! She is absoultely amazing. I try and stay positive every day, but it is hard - I'm sure you know what I mean. I'm not going to say too much at this point because I also don't like tempting fate. Anyway, she is a good little girl, most of the time! She is still going through terrible twos even though she is now three. She is our little angel, (and also her big sister). We love her loads and wouldn't change her for the world. I believe since my daughters were born, I am a different person, and look at the world differently. There is nothing in this world that I love more than my two kids and am thankful every day because they are beautiful.
Have a good Christmas and a Happy New Year.<img src="i/expressions/rose.gif" border="0">
Hiya,
I have two daughters, eldest is 5 and youngest is 3. Youngest daughter has CF and was diagnosed when she was 6 weeks old on screening. I call her little monkey frequently! She is absoultely amazing. I try and stay positive every day, but it is hard - I'm sure you know what I mean. I'm not going to say too much at this point because I also don't like tempting fate. Anyway, she is a good little girl, most of the time! She is still going through terrible twos even though she is now three. She is our little angel, (and also her big sister). We love her loads and wouldn't change her for the world. I believe since my daughters were born, I am a different person, and look at the world differently. There is nothing in this world that I love more than my two kids and am thankful every day because they are beautiful.
Have a good Christmas and a Happy New Year.<img src="i/expressions/rose.gif" border="0">
I have two daughters, eldest is 5 and youngest is 3. Youngest daughter has CF and was diagnosed when she was 6 weeks old on screening. I call her little monkey frequently! She is absoultely amazing. I try and stay positive every day, but it is hard - I'm sure you know what I mean. I'm not going to say too much at this point because I also don't like tempting fate. Anyway, she is a good little girl, most of the time! She is still going through terrible twos even though she is now three. She is our little angel, (and also her big sister). We love her loads and wouldn't change her for the world. I believe since my daughters were born, I am a different person, and look at the world differently. There is nothing in this world that I love more than my two kids and am thankful every day because they are beautiful.
Have a good Christmas and a Happy New Year.<img src="i/expressions/rose.gif" border="0">
lovemygirl
New member
There have been so many positives for our family, since our daughter was diagnosed, that I hardly know where to begin:
Our school hands out collection boxes (2 yrs in a row) at Hallowe'en and the kids go trick or treating to rais money for CF. This year they raised over $1,200.<img src="i/expressions/rose.gif" border="0">
A classmate of my daughters, who is only 6 yrs old. had a lemonade stand and raised $12 for CF this past summer. She wanted to help her friend.<img src="i/expressions/heart.gif" border="0">
Our family runs a golf tournament for CF each year and we have raised over $44,000 so far. This coming summer will be our 5th annual.<img src="i/expressions/lips.gif" border="0">
My husbands co-workers have run various events at his work to raise money and awareness for CF. This has been very touching for him.<img src="i/expressions/face-icon-small-smile.gif" border="0">
We were faced with a situation this year that was very difficult and many people in our community supported us in our time of need.<img src="i/expressions/face-icon-small-wink.gif" border="0">
During that same time we received a great amount of support from our CF team, and they were instrumental in getting us through it.
The most positive thing....our daughter is doing well and winning the fight!!
Great thread!!!
Our school hands out collection boxes (2 yrs in a row) at Hallowe'en and the kids go trick or treating to rais money for CF. This year they raised over $1,200.<img src="i/expressions/rose.gif" border="0">
A classmate of my daughters, who is only 6 yrs old. had a lemonade stand and raised $12 for CF this past summer. She wanted to help her friend.<img src="i/expressions/heart.gif" border="0">
Our family runs a golf tournament for CF each year and we have raised over $44,000 so far. This coming summer will be our 5th annual.<img src="i/expressions/lips.gif" border="0">
My husbands co-workers have run various events at his work to raise money and awareness for CF. This has been very touching for him.<img src="i/expressions/face-icon-small-smile.gif" border="0">
We were faced with a situation this year that was very difficult and many people in our community supported us in our time of need.<img src="i/expressions/face-icon-small-wink.gif" border="0">
During that same time we received a great amount of support from our CF team, and they were instrumental in getting us through it.
The most positive thing....our daughter is doing well and winning the fight!!
Great thread!!!
lovemygirl
New member
There have been so many positives for our family, since our daughter was diagnosed, that I hardly know where to begin:
Our school hands out collection boxes (2 yrs in a row) at Hallowe'en and the kids go trick or treating to rais money for CF. This year they raised over $1,200.<img src="i/expressions/rose.gif" border="0">
A classmate of my daughters, who is only 6 yrs old. had a lemonade stand and raised $12 for CF this past summer. She wanted to help her friend.<img src="i/expressions/heart.gif" border="0">
Our family runs a golf tournament for CF each year and we have raised over $44,000 so far. This coming summer will be our 5th annual.<img src="i/expressions/lips.gif" border="0">
My husbands co-workers have run various events at his work to raise money and awareness for CF. This has been very touching for him.<img src="i/expressions/face-icon-small-smile.gif" border="0">
We were faced with a situation this year that was very difficult and many people in our community supported us in our time of need.<img src="i/expressions/face-icon-small-wink.gif" border="0">
During that same time we received a great amount of support from our CF team, and they were instrumental in getting us through it.
The most positive thing....our daughter is doing well and winning the fight!!
Great thread!!!
Our school hands out collection boxes (2 yrs in a row) at Hallowe'en and the kids go trick or treating to rais money for CF. This year they raised over $1,200.<img src="i/expressions/rose.gif" border="0">
A classmate of my daughters, who is only 6 yrs old. had a lemonade stand and raised $12 for CF this past summer. She wanted to help her friend.<img src="i/expressions/heart.gif" border="0">
Our family runs a golf tournament for CF each year and we have raised over $44,000 so far. This coming summer will be our 5th annual.<img src="i/expressions/lips.gif" border="0">
My husbands co-workers have run various events at his work to raise money and awareness for CF. This has been very touching for him.<img src="i/expressions/face-icon-small-smile.gif" border="0">
We were faced with a situation this year that was very difficult and many people in our community supported us in our time of need.<img src="i/expressions/face-icon-small-wink.gif" border="0">
During that same time we received a great amount of support from our CF team, and they were instrumental in getting us through it.
The most positive thing....our daughter is doing well and winning the fight!!
Great thread!!!
lovemygirl
New member
There have been so many positives for our family, since our daughter was diagnosed, that I hardly know where to begin:
Our school hands out collection boxes (2 yrs in a row) at Hallowe'en and the kids go trick or treating to rais money for CF. This year they raised over $1,200.<img src="i/expressions/rose.gif" border="0">
A classmate of my daughters, who is only 6 yrs old. had a lemonade stand and raised $12 for CF this past summer. She wanted to help her friend.<img src="i/expressions/heart.gif" border="0">
Our family runs a golf tournament for CF each year and we have raised over $44,000 so far. This coming summer will be our 5th annual.<img src="i/expressions/lips.gif" border="0">
My husbands co-workers have run various events at his work to raise money and awareness for CF. This has been very touching for him.<img src="i/expressions/face-icon-small-smile.gif" border="0">
We were faced with a situation this year that was very difficult and many people in our community supported us in our time of need.<img src="i/expressions/face-icon-small-wink.gif" border="0">
During that same time we received a great amount of support from our CF team, and they were instrumental in getting us through it.
The most positive thing....our daughter is doing well and winning the fight!!
Great thread!!!
Our school hands out collection boxes (2 yrs in a row) at Hallowe'en and the kids go trick or treating to rais money for CF. This year they raised over $1,200.<img src="i/expressions/rose.gif" border="0">
A classmate of my daughters, who is only 6 yrs old. had a lemonade stand and raised $12 for CF this past summer. She wanted to help her friend.<img src="i/expressions/heart.gif" border="0">
Our family runs a golf tournament for CF each year and we have raised over $44,000 so far. This coming summer will be our 5th annual.<img src="i/expressions/lips.gif" border="0">
My husbands co-workers have run various events at his work to raise money and awareness for CF. This has been very touching for him.<img src="i/expressions/face-icon-small-smile.gif" border="0">
We were faced with a situation this year that was very difficult and many people in our community supported us in our time of need.<img src="i/expressions/face-icon-small-wink.gif" border="0">
During that same time we received a great amount of support from our CF team, and they were instrumental in getting us through it.
The most positive thing....our daughter is doing well and winning the fight!!
Great thread!!!
Augustmom0003
New member
Wow...such a great idea/thread!!! Yes, with CF comes sadness...but CF also brings wonderful things...I know...that's crazy to say...but true.
The GOOD things CF has given me:
-some of the best friends ever
-courage and strength...that I NEVER thought I had
-the understanding of the fragility of life and to NEVER take a day for granted
-the clarity of what true friends are
-to know NOT to sweat the small stuff
-to know that your family isn't always blood related...they can be nurses, doctors, RT's, social workers, Great Strides Committee members
-a whole new wonderful world...with some of the best, most caring people who understand exactly what you are going through..
It really had given me a lot. Not that I wouldn't trade anything for CF NOT to have entered our lives, but I'm so, so grateful for what we have.
The GOOD things CF has given me:
-some of the best friends ever
-courage and strength...that I NEVER thought I had
-the understanding of the fragility of life and to NEVER take a day for granted
-the clarity of what true friends are
-to know NOT to sweat the small stuff
-to know that your family isn't always blood related...they can be nurses, doctors, RT's, social workers, Great Strides Committee members
-a whole new wonderful world...with some of the best, most caring people who understand exactly what you are going through..
It really had given me a lot. Not that I wouldn't trade anything for CF NOT to have entered our lives, but I'm so, so grateful for what we have.
Augustmom0003
New member
Wow...such a great idea/thread!!! Yes, with CF comes sadness...but CF also brings wonderful things...I know...that's crazy to say...but true.
The GOOD things CF has given me:
-some of the best friends ever
-courage and strength...that I NEVER thought I had
-the understanding of the fragility of life and to NEVER take a day for granted
-the clarity of what true friends are
-to know NOT to sweat the small stuff
-to know that your family isn't always blood related...they can be nurses, doctors, RT's, social workers, Great Strides Committee members
-a whole new wonderful world...with some of the best, most caring people who understand exactly what you are going through..
It really had given me a lot. Not that I wouldn't trade anything for CF NOT to have entered our lives, but I'm so, so grateful for what we have.
The GOOD things CF has given me:
-some of the best friends ever
-courage and strength...that I NEVER thought I had
-the understanding of the fragility of life and to NEVER take a day for granted
-the clarity of what true friends are
-to know NOT to sweat the small stuff
-to know that your family isn't always blood related...they can be nurses, doctors, RT's, social workers, Great Strides Committee members
-a whole new wonderful world...with some of the best, most caring people who understand exactly what you are going through..
It really had given me a lot. Not that I wouldn't trade anything for CF NOT to have entered our lives, but I'm so, so grateful for what we have.
Augustmom0003
New member
Wow...such a great idea/thread!!! Yes, with CF comes sadness...but CF also brings wonderful things...I know...that's crazy to say...but true.
The GOOD things CF has given me:
-some of the best friends ever
-courage and strength...that I NEVER thought I had
-the understanding of the fragility of life and to NEVER take a day for granted
-the clarity of what true friends are
-to know NOT to sweat the small stuff
-to know that your family isn't always blood related...they can be nurses, doctors, RT's, social workers, Great Strides Committee members
-a whole new wonderful world...with some of the best, most caring people who understand exactly what you are going through..
It really had given me a lot. Not that I wouldn't trade anything for CF NOT to have entered our lives, but I'm so, so grateful for what we have.
The GOOD things CF has given me:
-some of the best friends ever
-courage and strength...that I NEVER thought I had
-the understanding of the fragility of life and to NEVER take a day for granted
-the clarity of what true friends are
-to know NOT to sweat the small stuff
-to know that your family isn't always blood related...they can be nurses, doctors, RT's, social workers, Great Strides Committee members
-a whole new wonderful world...with some of the best, most caring people who understand exactly what you are going through..
It really had given me a lot. Not that I wouldn't trade anything for CF NOT to have entered our lives, but I'm so, so grateful for what we have.