Our Daughter

[lflatford]

With Avery we have held nothing back, although she is 4 years old she is well beyond her years. She started swallowing enzymes whole when she was two, and she has been a trooper about CF. She ask questions we give her the answer. It grips at your heart, but we want her to know she has CF but CF does not define who she is or who she will become. I take her out for daddy/daughter time to talk. We talk aboutlife, butterflies, CF, her treatments etc, I let her vent to me and I tell her how mommy and daddy feel. We always stress how proud we are of her.


She understands she has CF, and as she gets older our talks will get more indepth. But we won't hold anything back the good and the bad. The main thing is she knows mommy and daddy are very active in the community and that this will translate into her being pro-active as she gets older. She has a great support group as do her mother and I. But Avery is the type of person that is headstrong and stubborn that will look CF in the face and challenge it and be an advocate.

Chuck father to Avery 4 years old with CF DDF508 and Rhett 3 carrier.

 

[lflatford]

With Avery we have held nothing back, although she is 4 years old she is well beyond her years. She started swallowing enzymes whole when she was two, and she has been a trooper about CF. She ask questions we give her the answer. It grips at your heart, but we want her to know she has CF but CF does not define who she is or who she will become. I take her out for daddy/daughter time to talk. We talk aboutlife, butterflies, CF, her treatments etc, I let her vent to me and I tell her how mommy and daddy feel. We always stress how proud we are of her.


She understands she has CF, and as she gets older our talks will get more indepth. But we won't hold anything back the good and the bad. The main thing is she knows mommy and daddy are very active in the community and that this will translate into her being pro-active as she gets older. She has a great support group as do her mother and I. But Avery is the type of person that is headstrong and stubborn that will look CF in the face and challenge it and be an advocate.

Chuck father to Avery 4 years old with CF DDF508 and Rhett 3 carrier.

 

[lflatford]

With Avery we have held nothing back, although she is 4 years old she is well beyond her years. She started swallowing enzymes whole when she was two, and she has been a trooper about CF. She ask questions we give her the answer. It grips at your heart, but we want her to know she has CF but CF does not define who she is or who she will become. I take her out for daddy/daughter time to talk. We talk aboutlife, butterflies, CF, her treatments etc, I let her vent to me and I tell her how mommy and daddy feel. We always stress how proud we are of her.


She understands she has CF, and as she gets older our talks will get more indepth. But we won't hold anything back the good and the bad. The main thing is she knows mommy and daddy are very active in the community and that this will translate into her being pro-active as she gets older. She has a great support group as do her mother and I. But Avery is the type of person that is headstrong and stubborn that will look CF in the face and challenge it and be an advocate.

Chuck father to Avery 4 years old with CF DDF508 and Rhett 3 carrier.

 

[lflatford]

With Avery we have held nothing back, although she is 4 years old she is well beyond her years. She started swallowing enzymes whole when she was two, and she has been a trooper about CF. She ask questions we give her the answer. It grips at your heart, but we want her to know she has CF but CF does not define who she is or who she will become. I take her out for daddy/daughter time to talk. We talk aboutlife, butterflies, CF, her treatments etc, I let her vent to me and I tell her how mommy and daddy feel. We always stress how proud we are of her.


She understands she has CF, and as she gets older our talks will get more indepth. But we won't hold anything back the good and the bad. The main thing is she knows mommy and daddy are very active in the community and that this will translate into her being pro-active as she gets older. She has a great support group as do her mother and I. But Avery is the type of person that is headstrong and stubborn that will look CF in the face and challenge it and be an advocate.

Chuck father to Avery 4 years old with CF DDF508 and Rhett 3 carrier.

 

[lflatford]

With Avery we have held nothing back, although she is 4 years old she is well beyond her years. She started swallowing enzymes whole when she was two, and she has been a trooper about CF. She ask questions we give her the answer. It grips at your heart, but we want her to know she has CF but CF does not define who she is or who she will become. I take her out for daddy/daughter time to talk. We talk aboutlife, butterflies, CF, her treatments etc, I let her vent to me and I tell her how mommy and daddy feel. We always stress how proud we are of her.
<br />
<br />
<br />She understands she has CF, and as she gets older our talks will get more indepth. But we won't hold anything back the good and the bad. The main thing is she knows mommy and daddy are very active in the community and that this will translate into her being pro-active as she gets older. She has a great support group as do her mother and I. But Avery is the type of person that is headstrong and stubborn that will look CF in the face and challenge it and be an advocate.
<br />
<br />Chuck father to Avery 4 years old with CF DDF508 and Rhett 3 carrier.

 

[rubyroselee]

I remember when I started Tobi back when it first came out, and I realized that I'd be taking this medication probably for the rest of my life. Up until then I was only doing nebbed antibiotics when sick, but now I had this month on/month off routine to get used to. Now I love it because I feel so much better when I'm on it!

As with most kids, I also thought everyone in the world had CF like me. My best friend was sitting next to me watching TV one day (not sure how old we were, probably about 5). I asked him something like, "When you get therapy in the morning, don't you hate it too?" ...and he just sort of looked at me funny and said, "I don't get therapy like you." I said, "Don't you go see a CF doctor every once in awhile?" He said, "No." That was the first time I realized I was different. It was a lot to take in as I recall.

It's always hard when you realize that you're different or that you figure out this is your routine for life. It has to be hard as a parent of a CF child to have to explain all the CF stuff as the questions arise, but I think most parents are able to find the right words at the right time. Good luck. I think all kids go through this stage at some point.

 

[rubyroselee]

I remember when I started Tobi back when it first came out, and I realized that I'd be taking this medication probably for the rest of my life. Up until then I was only doing nebbed antibiotics when sick, but now I had this month on/month off routine to get used to. Now I love it because I feel so much better when I'm on it!

As with most kids, I also thought everyone in the world had CF like me. My best friend was sitting next to me watching TV one day (not sure how old we were, probably about 5). I asked him something like, "When you get therapy in the morning, don't you hate it too?" ...and he just sort of looked at me funny and said, "I don't get therapy like you." I said, "Don't you go see a CF doctor every once in awhile?" He said, "No." That was the first time I realized I was different. It was a lot to take in as I recall.

It's always hard when you realize that you're different or that you figure out this is your routine for life. It has to be hard as a parent of a CF child to have to explain all the CF stuff as the questions arise, but I think most parents are able to find the right words at the right time. Good luck. I think all kids go through this stage at some point.

 

[rubyroselee]

I remember when I started Tobi back when it first came out, and I realized that I'd be taking this medication probably for the rest of my life. Up until then I was only doing nebbed antibiotics when sick, but now I had this month on/month off routine to get used to. Now I love it because I feel so much better when I'm on it!

As with most kids, I also thought everyone in the world had CF like me. My best friend was sitting next to me watching TV one day (not sure how old we were, probably about 5). I asked him something like, "When you get therapy in the morning, don't you hate it too?" ...and he just sort of looked at me funny and said, "I don't get therapy like you." I said, "Don't you go see a CF doctor every once in awhile?" He said, "No." That was the first time I realized I was different. It was a lot to take in as I recall.

It's always hard when you realize that you're different or that you figure out this is your routine for life. It has to be hard as a parent of a CF child to have to explain all the CF stuff as the questions arise, but I think most parents are able to find the right words at the right time. Good luck. I think all kids go through this stage at some point.

 

[rubyroselee]

I remember when I started Tobi back when it first came out, and I realized that I'd be taking this medication probably for the rest of my life. Up until then I was only doing nebbed antibiotics when sick, but now I had this month on/month off routine to get used to. Now I love it because I feel so much better when I'm on it!

As with most kids, I also thought everyone in the world had CF like me. My best friend was sitting next to me watching TV one day (not sure how old we were, probably about 5). I asked him something like, "When you get therapy in the morning, don't you hate it too?" ...and he just sort of looked at me funny and said, "I don't get therapy like you." I said, "Don't you go see a CF doctor every once in awhile?" He said, "No." That was the first time I realized I was different. It was a lot to take in as I recall.

It's always hard when you realize that you're different or that you figure out this is your routine for life. It has to be hard as a parent of a CF child to have to explain all the CF stuff as the questions arise, but I think most parents are able to find the right words at the right time. Good luck. I think all kids go through this stage at some point.

 

[rubyroselee]

I remember when I started Tobi back when it first came out, and I realized that I'd be taking this medication probably for the rest of my life. Up until then I was only doing nebbed antibiotics when sick, but now I had this month on/month off routine to get used to. Now I love it because I feel so much better when I'm on it!
<br />
<br />As with most kids, I also thought everyone in the world had CF like me. My best friend was sitting next to me watching TV one day (not sure how old we were, probably about 5). I asked him something like, "When you get therapy in the morning, don't you hate it too?" ...and he just sort of looked at me funny and said, "I don't get therapy like you." I said, "Don't you go see a CF doctor every once in awhile?" He said, "No." That was the first time I realized I was different. It was a lot to take in as I recall.
<br />
<br />It's always hard when you realize that you're different or that you figure out this is your routine for life. It has to be hard as a parent of a CF child to have to explain all the CF stuff as the questions arise, but I think most parents are able to find the right words at the right time. Good luck. I think all kids go through this stage at some point.