Clinic Visit Yesterday

[Chilemom]

Tina: great visit, that is a check in your list, at least thats what i do: weight gain a: check, a month without even a cold: check, etc.
at least for me now i have little goals, so I live my life trying to achieve this little goals, that in the long term is a big goal: have my little beautiful daughter healthy.
What about your big son? i remember his sweat test was border line, how he fill right now?.
keep us inform, what about your daughter´s, i always think what would i do when mine will realize she has cf. I read in your post that one of your daughters fill different because she has cf, I am wondering if its ok to describe cf as something that make you different?, i mean, dose CF makes you different from the rest? I don´t have it so I don´t know, but from my point of view my daughter is not different from any other child, except for the fact that she is so cute.
what people think about that? maybe say cf makes me different is a good thing: i am speciall in the good sense.... i don´tknow, is just a thought.

 

[Chilemom]

Tina: great visit, that is a check in your list, at least thats what i do: weight gain a: check, a month without even a cold: check, etc.
at least for me now i have little goals, so I live my life trying to achieve this little goals, that in the long term is a big goal: have my little beautiful daughter healthy.
What about your big son? i remember his sweat test was border line, how he fill right now?.
keep us inform, what about your daughter´s, i always think what would i do when mine will realize she has cf. I read in your post that one of your daughters fill different because she has cf, I am wondering if its ok to describe cf as something that make you different?, i mean, dose CF makes you different from the rest? I don´t have it so I don´t know, but from my point of view my daughter is not different from any other child, except for the fact that she is so cute.
what people think about that? maybe say cf makes me different is a good thing: i am speciall in the good sense.... i don´tknow, is just a thought.

 

[Chilemom]

Tina: great visit, that is a check in your list, at least thats what i do: weight gain a: check, a month without even a cold: check, etc.
at least for me now i have little goals, so I live my life trying to achieve this little goals, that in the long term is a big goal: have my little beautiful daughter healthy.
What about your big son? i remember his sweat test was border line, how he fill right now?.
keep us inform, what about your daughter´s, i always think what would i do when mine will realize she has cf. I read in your post that one of your daughters fill different because she has cf, I am wondering if its ok to describe cf as something that make you different?, i mean, dose CF makes you different from the rest? I don´t have it so I don´t know, but from my point of view my daughter is not different from any other child, except for the fact that she is so cute.
what people think about that? maybe say cf makes me different is a good thing: i am speciall in the good sense.... i don´tknow, is just a thought.

 

[Chilemom]

Tina: great visit, that is a check in your list, at least thats what i do: weight gain a: check, a month without even a cold: check, etc.
at least for me now i have little goals, so I live my life trying to achieve this little goals, that in the long term is a big goal: have my little beautiful daughter healthy.
What about your big son? i remember his sweat test was border line, how he fill right now?.
keep us inform, what about your daughter´s, i always think what would i do when mine will realize she has cf. I read in your post that one of your daughters fill different because she has cf, I am wondering if its ok to describe cf as something that make you different?, i mean, dose CF makes you different from the rest? I don´t have it so I don´t know, but from my point of view my daughter is not different from any other child, except for the fact that she is so cute.
what people think about that? maybe say cf makes me different is a good thing: i am speciall in the good sense.... i don´tknow, is just a thought.

 

[Chilemom]

Tina: great visit, that is a check in your list, at least thats what i do: weight gain a: check, a month without even a cold: check, etc.
<br />at least for me now i have little goals, so I live my life trying to achieve this little goals, that in the long term is a big goal: have my little beautiful daughter healthy.
<br />What about your big son? i remember his sweat test was border line, how he fill right now?.
<br />keep us inform, what about your daughter´s, i always think what would i do when mine will realize she has cf. I read in your post that one of your daughters fill different because she has cf, I am wondering if its ok to describe cf as something that make you different?, i mean, dose CF makes you different from the rest? I don´t have it so I don´t know, but from my point of view my daughter is not different from any other child, except for the fact that she is so cute.
<br />what people think about that? maybe say cf makes me different is a good thing: i am speciall in the good sense.... i don´tknow, is just a thought.

 

[holmfamily1992]

Getting through the little things definatetly helps. My daughters dont feel different like they have an extremely large birth defect or something like that, they just know that they have a very bad disease and dont want to be shown pitty. They want to be treated like everone else. Which I guess is a good thing. They are strong girls, they get that from their mamma...<img src="i/expressions/face-icon-small-smile.gif" border="0">

I met yesterday with the Middle school to go over the 504 plan with them. I was happy to see that all the teachers were there and honestly were caring and understanding to her needs should anything ever arise.

Our local News paper came out again and did a recap on the recent news was received. They also talked about the lack of involvment from our community. Maybe just maybe that will get people on board the fight.

Our Doctor called yesterday and went over the chest x-rays and found that all three did have lung thickening. He told us once they got their pulmozyme it should start to thin. My 12 year old used her rescue meds before volleyball yesterday and it did a world of good. She said she didnt have any problems running and keeping up with everyone. That was a huge relief.

Dylan was extremely mad at us last night. My 16 year old had his first night of football and we were all at the game. Dylan was running around playing and having a blast when it just started down pouring then it got cold. There was only 2 min. left in the game so we decided to go before anyone got sick. Anyone not just him. We got back to the car soaking wet and cold and he sat with his arms crossed with a very stern look on his face. I asked him what was wrong and just said "nothing". I explained that we didnt come back to the car just because he could get sick but everyone. It was raining hard and the game was almost over. He just saw it as we took all his fun away. Of course we were looking out for him and all the kids. Plus, the last thing I wanted to do was sit in the rain soaking wet! I guess there will be many more times like this and we just have to tip toe very slowely through them.

Tina

 

[holmfamily1992]

Getting through the little things definatetly helps. My daughters dont feel different like they have an extremely large birth defect or something like that, they just know that they have a very bad disease and dont want to be shown pitty. They want to be treated like everone else. Which I guess is a good thing. They are strong girls, they get that from their mamma...<img src="i/expressions/face-icon-small-smile.gif" border="0">

I met yesterday with the Middle school to go over the 504 plan with them. I was happy to see that all the teachers were there and honestly were caring and understanding to her needs should anything ever arise.

Our local News paper came out again and did a recap on the recent news was received. They also talked about the lack of involvment from our community. Maybe just maybe that will get people on board the fight.

Our Doctor called yesterday and went over the chest x-rays and found that all three did have lung thickening. He told us once they got their pulmozyme it should start to thin. My 12 year old used her rescue meds before volleyball yesterday and it did a world of good. She said she didnt have any problems running and keeping up with everyone. That was a huge relief.

Dylan was extremely mad at us last night. My 16 year old had his first night of football and we were all at the game. Dylan was running around playing and having a blast when it just started down pouring then it got cold. There was only 2 min. left in the game so we decided to go before anyone got sick. Anyone not just him. We got back to the car soaking wet and cold and he sat with his arms crossed with a very stern look on his face. I asked him what was wrong and just said "nothing". I explained that we didnt come back to the car just because he could get sick but everyone. It was raining hard and the game was almost over. He just saw it as we took all his fun away. Of course we were looking out for him and all the kids. Plus, the last thing I wanted to do was sit in the rain soaking wet! I guess there will be many more times like this and we just have to tip toe very slowely through them.

Tina

 

[holmfamily1992]

Getting through the little things definatetly helps. My daughters dont feel different like they have an extremely large birth defect or something like that, they just know that they have a very bad disease and dont want to be shown pitty. They want to be treated like everone else. Which I guess is a good thing. They are strong girls, they get that from their mamma...<img src="i/expressions/face-icon-small-smile.gif" border="0">

I met yesterday with the Middle school to go over the 504 plan with them. I was happy to see that all the teachers were there and honestly were caring and understanding to her needs should anything ever arise.

Our local News paper came out again and did a recap on the recent news was received. They also talked about the lack of involvment from our community. Maybe just maybe that will get people on board the fight.

Our Doctor called yesterday and went over the chest x-rays and found that all three did have lung thickening. He told us once they got their pulmozyme it should start to thin. My 12 year old used her rescue meds before volleyball yesterday and it did a world of good. She said she didnt have any problems running and keeping up with everyone. That was a huge relief.

Dylan was extremely mad at us last night. My 16 year old had his first night of football and we were all at the game. Dylan was running around playing and having a blast when it just started down pouring then it got cold. There was only 2 min. left in the game so we decided to go before anyone got sick. Anyone not just him. We got back to the car soaking wet and cold and he sat with his arms crossed with a very stern look on his face. I asked him what was wrong and just said "nothing". I explained that we didnt come back to the car just because he could get sick but everyone. It was raining hard and the game was almost over. He just saw it as we took all his fun away. Of course we were looking out for him and all the kids. Plus, the last thing I wanted to do was sit in the rain soaking wet! I guess there will be many more times like this and we just have to tip toe very slowely through them.

Tina

 

[holmfamily1992]

Getting through the little things definatetly helps. My daughters dont feel different like they have an extremely large birth defect or something like that, they just know that they have a very bad disease and dont want to be shown pitty. They want to be treated like everone else. Which I guess is a good thing. They are strong girls, they get that from their mamma...<img src="i/expressions/face-icon-small-smile.gif" border="0">

I met yesterday with the Middle school to go over the 504 plan with them. I was happy to see that all the teachers were there and honestly were caring and understanding to her needs should anything ever arise.

Our local News paper came out again and did a recap on the recent news was received. They also talked about the lack of involvment from our community. Maybe just maybe that will get people on board the fight.

Our Doctor called yesterday and went over the chest x-rays and found that all three did have lung thickening. He told us once they got their pulmozyme it should start to thin. My 12 year old used her rescue meds before volleyball yesterday and it did a world of good. She said she didnt have any problems running and keeping up with everyone. That was a huge relief.

Dylan was extremely mad at us last night. My 16 year old had his first night of football and we were all at the game. Dylan was running around playing and having a blast when it just started down pouring then it got cold. There was only 2 min. left in the game so we decided to go before anyone got sick. Anyone not just him. We got back to the car soaking wet and cold and he sat with his arms crossed with a very stern look on his face. I asked him what was wrong and just said "nothing". I explained that we didnt come back to the car just because he could get sick but everyone. It was raining hard and the game was almost over. He just saw it as we took all his fun away. Of course we were looking out for him and all the kids. Plus, the last thing I wanted to do was sit in the rain soaking wet! I guess there will be many more times like this and we just have to tip toe very slowely through them.

Tina

 

[holmfamily1992]

Getting through the little things definatetly helps. My daughters dont feel different like they have an extremely large birth defect or something like that, they just know that they have a very bad disease and dont want to be shown pitty. They want to be treated like everone else. Which I guess is a good thing. They are strong girls, they get that from their mamma...<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I met yesterday with the Middle school to go over the 504 plan with them. I was happy to see that all the teachers were there and honestly were caring and understanding to her needs should anything ever arise.
<br />
<br />Our local News paper came out again and did a recap on the recent news was received. They also talked about the lack of involvment from our community. Maybe just maybe that will get people on board the fight.
<br />
<br />Our Doctor called yesterday and went over the chest x-rays and found that all three did have lung thickening. He told us once they got their pulmozyme it should start to thin. My 12 year old used her rescue meds before volleyball yesterday and it did a world of good. She said she didnt have any problems running and keeping up with everyone. That was a huge relief.
<br />
<br />Dylan was extremely mad at us last night. My 16 year old had his first night of football and we were all at the game. Dylan was running around playing and having a blast when it just started down pouring then it got cold. There was only 2 min. left in the game so we decided to go before anyone got sick. Anyone not just him. We got back to the car soaking wet and cold and he sat with his arms crossed with a very stern look on his face. I asked him what was wrong and just said "nothing". I explained that we didnt come back to the car just because he could get sick but everyone. It was raining hard and the game was almost over. He just saw it as we took all his fun away. Of course we were looking out for him and all the kids. Plus, the last thing I wanted to do was sit in the rain soaking wet! I guess there will be many more times like this and we just have to tip toe very slowely through them.
<br />
<br />Tina

 

[tammykrumrey]

Tina,
I am glad to hear that the other kids are looking good<img src="i/expressions/face-icon-small-smile.gif" border="0"> and having a good attitude (although concerned, of course) about their new dx. I cannot imagine how hard it was for all of them, especially the girls who are older, to find out they have CF.

And congrats on the Vest for each one! Even with two, I would get extremely exhausted doing CPT by hand, especially when sick and if they needed and increase over the usual treatments. My girls still like CPT (love pats, as we call them) done by hand about once a week instead of the vest, but the Vest sure does make it easier on my arms!

Thanks for the update!

 

[tammykrumrey]

Tina,
I am glad to hear that the other kids are looking good<img src="i/expressions/face-icon-small-smile.gif" border="0"> and having a good attitude (although concerned, of course) about their new dx. I cannot imagine how hard it was for all of them, especially the girls who are older, to find out they have CF.

And congrats on the Vest for each one! Even with two, I would get extremely exhausted doing CPT by hand, especially when sick and if they needed and increase over the usual treatments. My girls still like CPT (love pats, as we call them) done by hand about once a week instead of the vest, but the Vest sure does make it easier on my arms!

Thanks for the update!

 

[tammykrumrey]

Tina,
I am glad to hear that the other kids are looking good<img src="i/expressions/face-icon-small-smile.gif" border="0"> and having a good attitude (although concerned, of course) about their new dx. I cannot imagine how hard it was for all of them, especially the girls who are older, to find out they have CF.

And congrats on the Vest for each one! Even with two, I would get extremely exhausted doing CPT by hand, especially when sick and if they needed and increase over the usual treatments. My girls still like CPT (love pats, as we call them) done by hand about once a week instead of the vest, but the Vest sure does make it easier on my arms!

Thanks for the update!

 

[tammykrumrey]

Tina,
I am glad to hear that the other kids are looking good<img src="i/expressions/face-icon-small-smile.gif" border="0"> and having a good attitude (although concerned, of course) about their new dx. I cannot imagine how hard it was for all of them, especially the girls who are older, to find out they have CF.

And congrats on the Vest for each one! Even with two, I would get extremely exhausted doing CPT by hand, especially when sick and if they needed and increase over the usual treatments. My girls still like CPT (love pats, as we call them) done by hand about once a week instead of the vest, but the Vest sure does make it easier on my arms!

Thanks for the update!

 

[tammykrumrey]

Tina,
<br />I am glad to hear that the other kids are looking good<img src="i/expressions/face-icon-small-smile.gif" border="0"> and having a good attitude (although concerned, of course) about their new dx. I cannot imagine how hard it was for all of them, especially the girls who are older, to find out they have CF.
<br />
<br />And congrats on the Vest for each one! Even with two, I would get extremely exhausted doing CPT by hand, especially when sick and if they needed and increase over the usual treatments. My girls still like CPT (love pats, as we call them) done by hand about once a week instead of the vest, but the Vest sure does make it easier on my arms!
<br />
<br />Thanks for the update!