daughter with newly diagnosed CF

[anonymous]

Hi Misty,
Im mom to a 3 yr old daughter with CF, and a boy on the way (we dont know if he has cf or not). I woke up this morning with a head full of questions and a heavy heart.. I found this site, and within minutes someone replied to me, and I felt so much better. Im a stay at home mom, with 1 friend that I can call a friend. As much as it is essential for us to take care of our children with and without CF, I think it's equally important to take care of ourselves. Ive found hope and encouragement all in one day on this site and I wish that for you too. In our family when we tell someone that Madison has Cystic Fibrosis, we say " Madison has CF, CF dosent have her." And I guess saying it so many times to so many different peeople has really made us believe it in our hearts. There will be tough times, and there will be times where you think it couldnt get any better. The thing you have to remember through ALL the times is to approach all situations with knowledge and heart. Knowledge so you will KNOW what is happening, and Heart to be able to deal with the ups and downs! I truly feel like you can get both of those things from the people on this site as well as from your friends and family. Good Luck with all that lies ahead!! Baby Steps!
Angela

 

[anonymous]

Hi Misty,
Im mom to a 3 yr old daughter with CF, and a boy on the way (we dont know if he has cf or not). I woke up this morning with a head full of questions and a heavy heart.. I found this site, and within minutes someone replied to me, and I felt so much better. Im a stay at home mom, with 1 friend that I can call a friend. As much as it is essential for us to take care of our children with and without CF, I think it's equally important to take care of ourselves. Ive found hope and encouragement all in one day on this site and I wish that for you too. In our family when we tell someone that Madison has Cystic Fibrosis, we say " Madison has CF, CF dosent have her." And I guess saying it so many times to so many different peeople has really made us believe it in our hearts. There will be tough times, and there will be times where you think it couldnt get any better. The thing you have to remember through ALL the times is to approach all situations with knowledge and heart. Knowledge so you will KNOW what is happening, and Heart to be able to deal with the ups and downs! I truly feel like you can get both of those things from the people on this site as well as from your friends and family. Good Luck with all that lies ahead!! Baby Steps!
Angela

 

[anonymous]

Hi Misty!
Welcome. Hopefully you will learn a great deal about cf on this site, I know I have. I have a four-year old daughter and a two-year old son. They both have cf and are doing great. I am not fond of fast foods. What nutritional value to they have? Do they help the body to function better? Hopefully your doctors point like others have said, is kids with cf do not digest/absorb all of their foods so they need more calories and fat. You can get plenty of calories/fat down without junk food. The nutritionist has told me to feed my kids candy, McDonald's, and cheetos. After reading up on nutrition and disease, that advice is ridiculous.

How is your daughter's weight? That is what you need to pay attention to. If she is doing well, keep feeding her the same way. If she needs more calories, add butter, carnation instant breakfast, and push the foods with fat/proteins (it doesn't have to be junk food). Of course vegetables and fruits are essential and are, in my opinion, just as important as foods with lots of calories/fat. My son's weight is 80% for height and 80% for weight. I am thrilled. Yes, he needs enzymes, but doesn't seem to need as many calories/fat as my daughter to gain weight.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

Hi Misty!
Welcome. Hopefully you will learn a great deal about cf on this site, I know I have. I have a four-year old daughter and a two-year old son. They both have cf and are doing great. I am not fond of fast foods. What nutritional value to they have? Do they help the body to function better? Hopefully your doctors point like others have said, is kids with cf do not digest/absorb all of their foods so they need more calories and fat. You can get plenty of calories/fat down without junk food. The nutritionist has told me to feed my kids candy, McDonald's, and cheetos. After reading up on nutrition and disease, that advice is ridiculous.

How is your daughter's weight? That is what you need to pay attention to. If she is doing well, keep feeding her the same way. If she needs more calories, add butter, carnation instant breakfast, and push the foods with fat/proteins (it doesn't have to be junk food). Of course vegetables and fruits are essential and are, in my opinion, just as important as foods with lots of calories/fat. My son's weight is 80% for height and 80% for weight. I am thrilled. Yes, he needs enzymes, but doesn't seem to need as many calories/fat as my daughter to gain weight.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

Hi Misty,
I don't have a lot to add to what everyone else has already said. I just wanted to welcome you and tell you about our situation. I have two kids; a 7 year old daughter and a 4 year old son. My son was diagnosed at 18 months, he was small, and presented with all of the G.I. problems. I remember driving home from that appointment feeling like my world had completely collapsed. Fast forward to today, and my life is so much better than I thought it would be. My son is doing great, he is in preschool 3 days a week and loves it. It gives him the opportunity to make friends and get ready for kindergarten (which he starts in Aug. 07). He is a normal kid in every respect. He has tons of energy, loves to eat, play, annoy his sister, ride his bike, sing, dance, yell, swim, scooter, run. Yeah, we worry more, spend a lot more money on meds, drs and food, but life is good. I no longer break down in front of people when I tell them he has CF. It may seem hard to believe, but you are going to be okay. You will learn to live with a new normal.

There are several things we have done to created a positive from a negative. My husband and I have gotten involved with a CF golf tournament which is run by a friend that I met through a mutual friend (we netted $64,000 last year). The support for this event from our family and friends is incredible and it helps. Working on the tournament gives us a sense of control over CF and what it brings to our lives. And this year, we are going to do Great Strides for the first time with a team from my son's preschool, so he can feel like he is doing something. We also have become a member of our CF community. Through our center we have made some really great friends who understand our struggles. We also attend as many education events as we can. I am not sure where you live, but Standford is having an education day on March 11. We have gone to this a few times and always leave with great information and lots of hope.

Please feel free to e-mail me KellyBrancoli@sbcglobal.net

Hugs,
Kelly

 

[anonymous]

Hi Misty,
I don't have a lot to add to what everyone else has already said. I just wanted to welcome you and tell you about our situation. I have two kids; a 7 year old daughter and a 4 year old son. My son was diagnosed at 18 months, he was small, and presented with all of the G.I. problems. I remember driving home from that appointment feeling like my world had completely collapsed. Fast forward to today, and my life is so much better than I thought it would be. My son is doing great, he is in preschool 3 days a week and loves it. It gives him the opportunity to make friends and get ready for kindergarten (which he starts in Aug. 07). He is a normal kid in every respect. He has tons of energy, loves to eat, play, annoy his sister, ride his bike, sing, dance, yell, swim, scooter, run. Yeah, we worry more, spend a lot more money on meds, drs and food, but life is good. I no longer break down in front of people when I tell them he has CF. It may seem hard to believe, but you are going to be okay. You will learn to live with a new normal.

There are several things we have done to created a positive from a negative. My husband and I have gotten involved with a CF golf tournament which is run by a friend that I met through a mutual friend (we netted $64,000 last year). The support for this event from our family and friends is incredible and it helps. Working on the tournament gives us a sense of control over CF and what it brings to our lives. And this year, we are going to do Great Strides for the first time with a team from my son's preschool, so he can feel like he is doing something. We also have become a member of our CF community. Through our center we have made some really great friends who understand our struggles. We also attend as many education events as we can. I am not sure where you live, but Standford is having an education day on March 11. We have gone to this a few times and always leave with great information and lots of hope.

Please feel free to e-mail me KellyBrancoli@sbcglobal.net

Hugs,
Kelly

 

[anonymous]

Hi Misty
I know that when my son was diagonosed i thought my life had come to an end as well only to find out 2 weeks later that his big brother also had CF, i can remmber sitting in the doctors office thinking what is happening to my family and how will i get through this raising 2 sick children.. but i did and i became very invovled in fundraising because it gave me purpose and hope, i didn't have to sit and wait for this dieses to attack my children i could fight back for my children! i just want you to know things do get easer as the years pass but we will always have some fear and sadness along the way, these our are children and we love them... I wish you and your family the best and i will pray for comfort and rest.. just remmber to take care of yourself take breaks and relax and it is ok to feel the way you do and don't let anyone ever tell you, you do not have the right to do so,,,,

 

[anonymous]

Hi Misty
I know that when my son was diagonosed i thought my life had come to an end as well only to find out 2 weeks later that his big brother also had CF, i can remmber sitting in the doctors office thinking what is happening to my family and how will i get through this raising 2 sick children.. but i did and i became very invovled in fundraising because it gave me purpose and hope, i didn't have to sit and wait for this dieses to attack my children i could fight back for my children! i just want you to know things do get easer as the years pass but we will always have some fear and sadness along the way, these our are children and we love them... I wish you and your family the best and i will pray for comfort and rest.. just remmber to take care of yourself take breaks and relax and it is ok to feel the way you do and don't let anyone ever tell you, you do not have the right to do so,,,,

 

[mistylavon]

I really appreciate everyone here. I've been given some wonderful, helpful information. Each day is getting better already. We also have a 3 yr. old and we have to get her tested too. She has no signs of any problems, she's at the 95% and has never had any kind of sickness. But I'm still worried, it seems like several on this board have 2 children w/ CF. Did all of your children have signs of CF or did some of them seem completely healthy?

 

[mistylavon]

I really appreciate everyone here. I've been given some wonderful, helpful information. Each day is getting better already. We also have a 3 yr. old and we have to get her tested too. She has no signs of any problems, she's at the 95% and has never had any kind of sickness. But I'm still worried, it seems like several on this board have 2 children w/ CF. Did all of your children have signs of CF or did some of them seem completely healthy?

 

[anonymous]

hi Misty,

It's good you're getting your 3 year old tested but try to hang in there til ya get the results. My son who is 7 does NOT have CF but my daughter who is 3 does have CF. I found out my daughter had CF when i was pregnant through genetic testing(this was a shock and surprise to us). I had to have my son sweat tested(he was about 3 or so at the time). He had no symptoms of CF but i was still wracked with worry. He was also always 100% for weight and overall very healthy but the CF clinic wanted him tested just to be cautious. Either way I have 2 amazing children who have fun , happy lives. Today we all went ice-skating after a busy day of new sneaker shopping and Burger King. My daughter has lots of treatments she does every day but it becomes a part of your "normal" routine. Just remember it's more likely your 3 year old does not have CF than does. 75% chance she does NOT have CF , 25% chance that she does.

Rebecca(mom to sammy7 no CF and Maggie 3 with CF)

come check out our webpage at <a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/Great_Strides/RebeccaMurray">http://www.cff.org/Great_Strides/RebeccaMurray</a>

 

[anonymous]

hi Misty,

It's good you're getting your 3 year old tested but try to hang in there til ya get the results. My son who is 7 does NOT have CF but my daughter who is 3 does have CF. I found out my daughter had CF when i was pregnant through genetic testing(this was a shock and surprise to us). I had to have my son sweat tested(he was about 3 or so at the time). He had no symptoms of CF but i was still wracked with worry. He was also always 100% for weight and overall very healthy but the CF clinic wanted him tested just to be cautious. Either way I have 2 amazing children who have fun , happy lives. Today we all went ice-skating after a busy day of new sneaker shopping and Burger King. My daughter has lots of treatments she does every day but it becomes a part of your "normal" routine. Just remember it's more likely your 3 year old does not have CF than does. 75% chance she does NOT have CF , 25% chance that she does.

Rebecca(mom to sammy7 no CF and Maggie 3 with CF)

come check out our webpage at <a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/Great_Strides/RebeccaMurray">http://www.cff.org/Great_Strides/RebeccaMurray</a>

 

[anonymous]

Hi Rebecca,
I just wanted to tell you I clicked on your link and you have two of the most beautiful children I have ever seen. Kids (and grownups) with CF really do have a special quality. I think you can see it in the eyes.
Good luck with the walk. We are doing it for the first time this year.
Take care,
Kelly

 

[anonymous]

Hi Rebecca,
I just wanted to tell you I clicked on your link and you have two of the most beautiful children I have ever seen. Kids (and grownups) with CF really do have a special quality. I think you can see it in the eyes.
Good luck with the walk. We are doing it for the first time this year.
Take care,
Kelly

 

[Alyssa]

Misty,

Rebecca's post is exactly right -- only 25% chance that your other child will have CF too. Each pregnancy has the same 1 in 4 chances.

Hang in there and try not to worry too much -- I know it's hard. I had several years in between diagnosis for each of my kids -- so I didn't have to "process" them both at the same time in my head.

 

[Alyssa]

Misty,

Rebecca's post is exactly right -- only 25% chance that your other child will have CF too. Each pregnancy has the same 1 in 4 chances.

Hang in there and try not to worry too much -- I know it's hard. I had several years in between diagnosis for each of my kids -- so I didn't have to "process" them both at the same time in my head.

 

[anonymous]

Jane-
I am a teacher too! I agree with you that being a teacher is a great job if you have a child with CF!! My children aren't school age yet, but I am excited about the future with them and having the same days off!! Also I plan to have them in the same school system as me so I can be close to them if needed!! I can't believe I have never seen you before on the forum, well, it is nice to meet you!!

Lynsey-
Mom to Avery 2yrs. w/CF and Rhett 1yr. no CF

 

[anonymous]

Jane-
I am a teacher too! I agree with you that being a teacher is a great job if you have a child with CF!! My children aren't school age yet, but I am excited about the future with them and having the same days off!! Also I plan to have them in the same school system as me so I can be close to them if needed!! I can't believe I have never seen you before on the forum, well, it is nice to meet you!!

Lynsey-
Mom to Avery 2yrs. w/CF and Rhett 1yr. no CF

 

[anonymous]

MY OLDEST SON DID NOT SHOW ANY SIGNS OF CF AND WAS ALSO IN THE 95% HE WAS TESTED AFTER MY 2ND CHILD WAS DIAGNOSISED... BUT IT DOESN'T MEAN YOUR CHID WILL HAVE CF....

 

[anonymous]

MY OLDEST SON DID NOT SHOW ANY SIGNS OF CF AND WAS ALSO IN THE 95% HE WAS TESTED AFTER MY 2ND CHILD WAS DIAGNOSISED... BUT IT DOESN'T MEAN YOUR CHID WILL HAVE CF....