Two Diagnosed

[juls]

We have been lucky so far with the girls' health. They are hardly ever sick and we have had no hospitalizations.

The girls play together just like any other siblings. The only thing the CF diagnosis really changed was our plans for who would share a room. We only have 3 bedrooms so our son and older daughter share a room instead of the 2 girls. It works for now, but we will probably have to convert our den into a bedroom when Trevor gets older and doesn't want to share a room with his sister anymore!

Another interesting thing is that the girls don't culture the same bugs. They both had pseudomonas when first diagnosed. Now Taylor has been infection free for about a year and Isabella has continued to culture the PA off and on. Our doctor changed her from TOBI to Colistin in March and she too was infection free at our last clinic visit in June.

 

[juls]

We have been lucky so far with the girls' health. They are hardly ever sick and we have had no hospitalizations.

The girls play together just like any other siblings. The only thing the CF diagnosis really changed was our plans for who would share a room. We only have 3 bedrooms so our son and older daughter share a room instead of the 2 girls. It works for now, but we will probably have to convert our den into a bedroom when Trevor gets older and doesn't want to share a room with his sister anymore!

Another interesting thing is that the girls don't culture the same bugs. They both had pseudomonas when first diagnosed. Now Taylor has been infection free for about a year and Isabella has continued to culture the PA off and on. Our doctor changed her from TOBI to Colistin in March and she too was infection free at our last clinic visit in June.

 

[juls]

We have been lucky so far with the girls' health. They are hardly ever sick and we have had no hospitalizations.

The girls play together just like any other siblings. The only thing the CF diagnosis really changed was our plans for who would share a room. We only have 3 bedrooms so our son and older daughter share a room instead of the 2 girls. It works for now, but we will probably have to convert our den into a bedroom when Trevor gets older and doesn't want to share a room with his sister anymore!

Another interesting thing is that the girls don't culture the same bugs. They both had pseudomonas when first diagnosed. Now Taylor has been infection free for about a year and Isabella has continued to culture the PA off and on. Our doctor changed her from TOBI to Colistin in March and she too was infection free at our last clinic visit in June.

 

[juls]

We have been lucky so far with the girls' health. They are hardly ever sick and we have had no hospitalizations.

The girls play together just like any other siblings. The only thing the CF diagnosis really changed was our plans for who would share a room. We only have 3 bedrooms so our son and older daughter share a room instead of the 2 girls. It works for now, but we will probably have to convert our den into a bedroom when Trevor gets older and doesn't want to share a room with his sister anymore!

Another interesting thing is that the girls don't culture the same bugs. They both had pseudomonas when first diagnosed. Now Taylor has been infection free for about a year and Isabella has continued to culture the PA off and on. Our doctor changed her from TOBI to Colistin in March and she too was infection free at our last clinic visit in June.

 

[juls]

We have been lucky so far with the girls' health. They are hardly ever sick and we have had no hospitalizations.
<br />
<br />The girls play together just like any other siblings. The only thing the CF diagnosis really changed was our plans for who would share a room. We only have 3 bedrooms so our son and older daughter share a room instead of the 2 girls. It works for now, but we will probably have to convert our den into a bedroom when Trevor gets older and doesn't want to share a room with his sister anymore!
<br />
<br />Another interesting thing is that the girls don't culture the same bugs. They both had pseudomonas when first diagnosed. Now Taylor has been infection free for about a year and Isabella has continued to culture the PA off and on. Our doctor changed her from TOBI to Colistin in March and she too was infection free at our last clinic visit in June.

 

[sdelorenzo]

My kids play together like any other siblings as well. I don't know how it could be any different. My son has cultured pseudomonas about once a year since he was one years old. My daughter has only cultured one bacteria - staph. Although I know it is not the best thing to do - they often do their treatments in the same room watching the same tv show. I really didn't wash toys any more than I would if they didn't have cf. I have been amazed that my kids don't get as sick as often as their friends. One of the cf drs we took them to (Dr. Warwick) said cf kids have higher immunities and I believe it. I don't let them share cups, forks, toothpaste, etc. I also make sure their nebulizer equipment stays apart.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 5 months no cf

 

[sdelorenzo]

My kids play together like any other siblings as well. I don't know how it could be any different. My son has cultured pseudomonas about once a year since he was one years old. My daughter has only cultured one bacteria - staph. Although I know it is not the best thing to do - they often do their treatments in the same room watching the same tv show. I really didn't wash toys any more than I would if they didn't have cf. I have been amazed that my kids don't get as sick as often as their friends. One of the cf drs we took them to (Dr. Warwick) said cf kids have higher immunities and I believe it. I don't let them share cups, forks, toothpaste, etc. I also make sure their nebulizer equipment stays apart.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 5 months no cf

 

[sdelorenzo]

My kids play together like any other siblings as well. I don't know how it could be any different. My son has cultured pseudomonas about once a year since he was one years old. My daughter has only cultured one bacteria - staph. Although I know it is not the best thing to do - they often do their treatments in the same room watching the same tv show. I really didn't wash toys any more than I would if they didn't have cf. I have been amazed that my kids don't get as sick as often as their friends. One of the cf drs we took them to (Dr. Warwick) said cf kids have higher immunities and I believe it. I don't let them share cups, forks, toothpaste, etc. I also make sure their nebulizer equipment stays apart.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 5 months no cf

 

[sdelorenzo]

My kids play together like any other siblings as well. I don't know how it could be any different. My son has cultured pseudomonas about once a year since he was one years old. My daughter has only cultured one bacteria - staph. Although I know it is not the best thing to do - they often do their treatments in the same room watching the same tv show. I really didn't wash toys any more than I would if they didn't have cf. I have been amazed that my kids don't get as sick as often as their friends. One of the cf drs we took them to (Dr. Warwick) said cf kids have higher immunities and I believe it. I don't let them share cups, forks, toothpaste, etc. I also make sure their nebulizer equipment stays apart.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 5 months no cf

 

[sdelorenzo]

My kids play together like any other siblings as well. I don't know how it could be any different. My son has cultured pseudomonas about once a year since he was one years old. My daughter has only cultured one bacteria - staph. Although I know it is not the best thing to do - they often do their treatments in the same room watching the same tv show. I really didn't wash toys any more than I would if they didn't have cf. I have been amazed that my kids don't get as sick as often as their friends. One of the cf drs we took them to (Dr. Warwick) said cf kids have higher immunities and I believe it. I don't let them share cups, forks, toothpaste, etc. I also make sure their nebulizer equipment stays apart.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 5 months no cf

 

[rpcvchina]

We just had the first "negative" culture for the 3 year old. Now he will start a nebulizer with Tobi. He's very scared since he had an operation in June for a swollen lymph node. It just seems to keep coming and coming. Our newborn (born in April) is still in the NICU. Is this our new life? Forever? I'll have to quit work...

 

[rpcvchina]

We just had the first "negative" culture for the 3 year old. Now he will start a nebulizer with Tobi. He's very scared since he had an operation in June for a swollen lymph node. It just seems to keep coming and coming. Our newborn (born in April) is still in the NICU. Is this our new life? Forever? I'll have to quit work...

 

[rpcvchina]

We just had the first "negative" culture for the 3 year old. Now he will start a nebulizer with Tobi. He's very scared since he had an operation in June for a swollen lymph node. It just seems to keep coming and coming. Our newborn (born in April) is still in the NICU. Is this our new life? Forever? I'll have to quit work...

 

[rpcvchina]

We just had the first "negative" culture for the 3 year old. Now he will start a nebulizer with Tobi. He's very scared since he had an operation in June for a swollen lymph node. It just seems to keep coming and coming. Our newborn (born in April) is still in the NICU. Is this our new life? Forever? I'll have to quit work...

 

[rpcvchina]

We just had the first "negative" culture for the 3 year old. Now he will start a nebulizer with Tobi. He's very scared since he had an operation in June for a swollen lymph node. It just seems to keep coming and coming. Our newborn (born in April) is still in the NICU. Is this our new life? Forever? I'll have to quit work...

 

[mariahsmommy]

First of all I just wanted to welcome you to this forum and tell you how glad I am that you are reaching out for support. I wish I had of sooner, especially while we were in the NICU with my daughter. This will not be your life forever. There is a break from the hospital scene. I can't promise that it is forever but you will get to go home and stay for a while. My daughter is eight months old and we were in the NICU for six weeks and during that time she had two bowel surgeries and a gtube placed. We went home and were there for six weeks, but had to go back because she got an adhesion. It took two weeks to get her all better. We are back at home and have been since March. So far no respiratory infections (knock on wood). Life does get better and easier as they get older. Its just a routine that takes some getting used to. I don't have two to take care of but I am sure you are a great mom and can handle it. Take care and try to get some rest. My thoughts and prayers are with you.
Felicia

 

[mariahsmommy]

First of all I just wanted to welcome you to this forum and tell you how glad I am that you are reaching out for support. I wish I had of sooner, especially while we were in the NICU with my daughter. This will not be your life forever. There is a break from the hospital scene. I can't promise that it is forever but you will get to go home and stay for a while. My daughter is eight months old and we were in the NICU for six weeks and during that time she had two bowel surgeries and a gtube placed. We went home and were there for six weeks, but had to go back because she got an adhesion. It took two weeks to get her all better. We are back at home and have been since March. So far no respiratory infections (knock on wood). Life does get better and easier as they get older. Its just a routine that takes some getting used to. I don't have two to take care of but I am sure you are a great mom and can handle it. Take care and try to get some rest. My thoughts and prayers are with you.
Felicia

 

[mariahsmommy]

First of all I just wanted to welcome you to this forum and tell you how glad I am that you are reaching out for support. I wish I had of sooner, especially while we were in the NICU with my daughter. This will not be your life forever. There is a break from the hospital scene. I can't promise that it is forever but you will get to go home and stay for a while. My daughter is eight months old and we were in the NICU for six weeks and during that time she had two bowel surgeries and a gtube placed. We went home and were there for six weeks, but had to go back because she got an adhesion. It took two weeks to get her all better. We are back at home and have been since March. So far no respiratory infections (knock on wood). Life does get better and easier as they get older. Its just a routine that takes some getting used to. I don't have two to take care of but I am sure you are a great mom and can handle it. Take care and try to get some rest. My thoughts and prayers are with you.
Felicia

 

[mariahsmommy]

First of all I just wanted to welcome you to this forum and tell you how glad I am that you are reaching out for support. I wish I had of sooner, especially while we were in the NICU with my daughter. This will not be your life forever. There is a break from the hospital scene. I can't promise that it is forever but you will get to go home and stay for a while. My daughter is eight months old and we were in the NICU for six weeks and during that time she had two bowel surgeries and a gtube placed. We went home and were there for six weeks, but had to go back because she got an adhesion. It took two weeks to get her all better. We are back at home and have been since March. So far no respiratory infections (knock on wood). Life does get better and easier as they get older. Its just a routine that takes some getting used to. I don't have two to take care of but I am sure you are a great mom and can handle it. Take care and try to get some rest. My thoughts and prayers are with you.
Felicia

 

[mariahsmommy]

First of all I just wanted to welcome you to this forum and tell you how glad I am that you are reaching out for support. I wish I had of sooner, especially while we were in the NICU with my daughter. This will not be your life forever. There is a break from the hospital scene. I can't promise that it is forever but you will get to go home and stay for a while. My daughter is eight months old and we were in the NICU for six weeks and during that time she had two bowel surgeries and a gtube placed. We went home and were there for six weeks, but had to go back because she got an adhesion. It took two weeks to get her all better. We are back at home and have been since March. So far no respiratory infections (knock on wood). Life does get better and easier as they get older. Its just a routine that takes some getting used to. I don't have two to take care of but I am sure you are a great mom and can handle it. Take care and try to get some rest. My thoughts and prayers are with you.
<br />Felicia