CF living in Kentucky

Samsmom

New member
I don't know what the Scandi Shakes are, but I have read other posts that mentioned them. We have tried the Pediasure and Boost type drinks, but the problem is she doesn't like them. In fact she is a very picky eater, doesn't like ice cream or shakes or sweets in general. If she would eat enough I think she would gain, but she has a very poor appetite. Vivian is a cutie!!! Is she doing okay? I'm sure you have heard about the Derby that is coming up tomorrow, have you picked a horse? Mine is Dominican, a long shot but has local ties. He was named for the dominican nuns at the college I am going to (St. Catharine) Yes I am a 35 year old college student. He is from the Silver Hill Farm about 30 minutes from where I live. Samantha's CF is very mild, she has mostly digestive issues, very few lung issues. I guess we have been fortunate this far as she has never been seriously ill. Has Vivian had many serious illnesses? The more I read about CF the more I realize that no two CFers are alike. I just wish I knew what the future holds. Take care.
 

Samsmom

New member
I don't know what the Scandi Shakes are, but I have read other posts that mentioned them. We have tried the Pediasure and Boost type drinks, but the problem is she doesn't like them. In fact she is a very picky eater, doesn't like ice cream or shakes or sweets in general. If she would eat enough I think she would gain, but she has a very poor appetite. Vivian is a cutie!!! Is she doing okay? I'm sure you have heard about the Derby that is coming up tomorrow, have you picked a horse? Mine is Dominican, a long shot but has local ties. He was named for the dominican nuns at the college I am going to (St. Catharine) Yes I am a 35 year old college student. He is from the Silver Hill Farm about 30 minutes from where I live. Samantha's CF is very mild, she has mostly digestive issues, very few lung issues. I guess we have been fortunate this far as she has never been seriously ill. Has Vivian had many serious illnesses? The more I read about CF the more I realize that no two CFers are alike. I just wish I knew what the future holds. Take care.
 

ViviansMom

New member
Scandi Shakes are a high calorie drink that is made for weight gain, and are easily absorbed here is their site : www.scandishake.com. Ask at your clinic they should have samples they can let you try they come in Strawberry (Vivian's fave), chocolate ands vanilla. Another good thing with these are you can add them to most anything like pudding.
Vivian says thank you.

How did your horse do in the Derby, I didn't get to really pick one we was to wrapped up in going to see Spiderman 3, Vivian absolutely love Spiderman, I was the first in line for three hours just to get her advanced tickets. My brother said what's the hurry but momma doesn't make a promise she don't keep.

We have spent our days in the hospital Vivian started having symptoms right off and for the first 3 years we wasn't sure where we lived, my son was sure he was an orphan. We have had 2 collapsed lungs and ever type lung infection that a infant can get. I remember one time her respiration was 122 I thought I had did them wrong but the doctor confirmed it and rushed her to U. K's children hospital, its about a 3 hour drive for us . I was a nerves wreck by the time we got there. But Vivian has never had to go in for a tune up she had a scrap onece 2 years ago, she hasn't been in the hospital other than for the education on CFRD in almost 5 years (knock wood). Vivian also took seizures for about 3 years , she would be just fine them spike a fever and go in to a seizure that some times last 30 minute with just posturing. I do agree that CF seems to be it own little individual disease everyone seems to have different results and problems, There are a set of triplet that goes to my son's school 2 have CF one doesn't. One of the brothers are on a lung/ liver transplant list, the other as never been sick even though they carry the same genes there is that big of a differences.

I think the hardest thing for me has been dealing with the CFRD. Some days things are fine and others she is running high for what seems no reason. She also complains more with stomach pains.
Take Care
Carol
 

ViviansMom

New member
Scandi Shakes are a high calorie drink that is made for weight gain, and are easily absorbed here is their site : www.scandishake.com. Ask at your clinic they should have samples they can let you try they come in Strawberry (Vivian's fave), chocolate ands vanilla. Another good thing with these are you can add them to most anything like pudding.
Vivian says thank you.

How did your horse do in the Derby, I didn't get to really pick one we was to wrapped up in going to see Spiderman 3, Vivian absolutely love Spiderman, I was the first in line for three hours just to get her advanced tickets. My brother said what's the hurry but momma doesn't make a promise she don't keep.

We have spent our days in the hospital Vivian started having symptoms right off and for the first 3 years we wasn't sure where we lived, my son was sure he was an orphan. We have had 2 collapsed lungs and ever type lung infection that a infant can get. I remember one time her respiration was 122 I thought I had did them wrong but the doctor confirmed it and rushed her to U. K's children hospital, its about a 3 hour drive for us . I was a nerves wreck by the time we got there. But Vivian has never had to go in for a tune up she had a scrap onece 2 years ago, she hasn't been in the hospital other than for the education on CFRD in almost 5 years (knock wood). Vivian also took seizures for about 3 years , she would be just fine them spike a fever and go in to a seizure that some times last 30 minute with just posturing. I do agree that CF seems to be it own little individual disease everyone seems to have different results and problems, There are a set of triplet that goes to my son's school 2 have CF one doesn't. One of the brothers are on a lung/ liver transplant list, the other as never been sick even though they carry the same genes there is that big of a differences.

I think the hardest thing for me has been dealing with the CFRD. Some days things are fine and others she is running high for what seems no reason. She also complains more with stomach pains.
Take Care
Carol
 

ViviansMom

New member
Scandi Shakes are a high calorie drink that is made for weight gain, and are easily absorbed here is their site : www.scandishake.com. Ask at your clinic they should have samples they can let you try they come in Strawberry (Vivian's fave), chocolate ands vanilla. Another good thing with these are you can add them to most anything like pudding.
Vivian says thank you.

How did your horse do in the Derby, I didn't get to really pick one we was to wrapped up in going to see Spiderman 3, Vivian absolutely love Spiderman, I was the first in line for three hours just to get her advanced tickets. My brother said what's the hurry but momma doesn't make a promise she don't keep.

We have spent our days in the hospital Vivian started having symptoms right off and for the first 3 years we wasn't sure where we lived, my son was sure he was an orphan. We have had 2 collapsed lungs and ever type lung infection that a infant can get. I remember one time her respiration was 122 I thought I had did them wrong but the doctor confirmed it and rushed her to U. K's children hospital, its about a 3 hour drive for us . I was a nerves wreck by the time we got there. But Vivian has never had to go in for a tune up she had a scrap onece 2 years ago, she hasn't been in the hospital other than for the education on CFRD in almost 5 years (knock wood). Vivian also took seizures for about 3 years , she would be just fine them spike a fever and go in to a seizure that some times last 30 minute with just posturing. I do agree that CF seems to be it own little individual disease everyone seems to have different results and problems, There are a set of triplet that goes to my son's school 2 have CF one doesn't. One of the brothers are on a lung/ liver transplant list, the other as never been sick even though they carry the same genes there is that big of a differences.

I think the hardest thing for me has been dealing with the CFRD. Some days things are fine and others she is running high for what seems no reason. She also complains more with stomach pains.
Take Care
Carol
 

purplemartin

New member
WOW! My Briceton sounds a LOT like your Vivian when she was younger, we live in the hospital more than home. Even the younger sibiling felling like an orphan, thats what I picture my older daughter felling like.
 

purplemartin

New member
WOW! My Briceton sounds a LOT like your Vivian when she was younger, we live in the hospital more than home. Even the younger sibiling felling like an orphan, thats what I picture my older daughter felling like.
 

purplemartin

New member
WOW! My Briceton sounds a LOT like your Vivian when she was younger, we live in the hospital more than home. Even the younger sibiling felling like an orphan, thats what I picture my older daughter felling like.
 
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