lissajane22
New member
Why is this such a big deal? Relax!
O-V-E-R-R-E-A-C-T-I-O-N!!!!!!
O-V-E-R-R-E-A-C-T-I-O-N!!!!!!
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ANOTHER CF CHILD AT MY DAUGHTER'S SCHOOL
- Thread starter lexisangels05
- Start date
lissajane22
New member
Why is this such a big deal? Relax!
<br />
<br />O-V-E-R-R-E-A-C-T-I-O-N!!!!!!
<br />
<br />O-V-E-R-R-E-A-C-T-I-O-N!!!!!!
<div class="FTQUOTE"><begin quote>Another thing I keep thinking about is how this younger child may be treated or perceived by school staff being that he has to follow DS. In kindergarten DS was fairly healthy -- didn't miss school. His teacher dispensed enzymes in the classroom. I feel bad that they may have a perception that CF is no big deal and may make comparisons to DS. Especially being that the younger child has had soooo many health issues early on.</end quote></div>
I had to do some educating where this was concerned. The other child with CF was known to have it all along and Emily wasn't dx'ed until 2nd grade. (We are fortunate that they hadn't ever been in the same class- though with 9 classes in each grade, that wasn't too surprising.) I had to hear from the school nurse all the time how healthy this other child was and how she 'never missed a day of school' blah blah blah. It was SO FRUSTRATING. I was happy for this other child- really, I was, but she was all that Emily was not and it was difficult to hear. So education on how different all kids with cf can be is paramount. We had a very helpful letter from clinic covering all aspects of school and cf that was also very good to bring to the Health Plan meeting, and I also printed out the school pamplet on the CFRI website- a great resource for any of us, educators or not.
I had to do some educating where this was concerned. The other child with CF was known to have it all along and Emily wasn't dx'ed until 2nd grade. (We are fortunate that they hadn't ever been in the same class- though with 9 classes in each grade, that wasn't too surprising.) I had to hear from the school nurse all the time how healthy this other child was and how she 'never missed a day of school' blah blah blah. It was SO FRUSTRATING. I was happy for this other child- really, I was, but she was all that Emily was not and it was difficult to hear. So education on how different all kids with cf can be is paramount. We had a very helpful letter from clinic covering all aspects of school and cf that was also very good to bring to the Health Plan meeting, and I also printed out the school pamplet on the CFRI website- a great resource for any of us, educators or not.
<div class="FTQUOTE"><begin quote>Another thing I keep thinking about is how this younger child may be treated or perceived by school staff being that he has to follow DS. In kindergarten DS was fairly healthy -- didn't miss school. His teacher dispensed enzymes in the classroom. I feel bad that they may have a perception that CF is no big deal and may make comparisons to DS. Especially being that the younger child has had soooo many health issues early on.</end quote>
I had to do some educating where this was concerned. The other child with CF was known to have it all along and Emily wasn't dx'ed until 2nd grade. (We are fortunate that they hadn't ever been in the same class- though with 9 classes in each grade, that wasn't too surprising.) I had to hear from the school nurse all the time how healthy this other child was and how she 'never missed a day of school' blah blah blah. It was SO FRUSTRATING. I was happy for this other child- really, I was, but she was all that Emily was not and it was difficult to hear. So education on how different all kids with cf can be is paramount. We had a very helpful letter from clinic covering all aspects of school and cf that was also very good to bring to the Health Plan meeting, and I also printed out the school pamplet on the CFRI website- a great resource for any of us, educators or not.
I had to do some educating where this was concerned. The other child with CF was known to have it all along and Emily wasn't dx'ed until 2nd grade. (We are fortunate that they hadn't ever been in the same class- though with 9 classes in each grade, that wasn't too surprising.) I had to hear from the school nurse all the time how healthy this other child was and how she 'never missed a day of school' blah blah blah. It was SO FRUSTRATING. I was happy for this other child- really, I was, but she was all that Emily was not and it was difficult to hear. So education on how different all kids with cf can be is paramount. We had a very helpful letter from clinic covering all aspects of school and cf that was also very good to bring to the Health Plan meeting, and I also printed out the school pamplet on the CFRI website- a great resource for any of us, educators or not.
<div class="FTQUOTE"><begin quote>Another thing I keep thinking about is how this younger child may be treated or perceived by school staff being that he has to follow DS. In kindergarten DS was fairly healthy -- didn't miss school. His teacher dispensed enzymes in the classroom. I feel bad that they may have a perception that CF is no big deal and may make comparisons to DS. Especially being that the younger child has had soooo many health issues early on.</end quote>
<br />I had to do some educating where this was concerned. The other child with CF was known to have it all along and Emily wasn't dx'ed until 2nd grade. (We are fortunate that they hadn't ever been in the same class- though with 9 classes in each grade, that wasn't too surprising.) I had to hear from the school nurse all the time how healthy this other child was and how she 'never missed a day of school' blah blah blah. It was SO FRUSTRATING. I was happy for this other child- really, I was, but she was all that Emily was not and it was difficult to hear. So education on how different all kids with cf can be is paramount. We had a very helpful letter from clinic covering all aspects of school and cf that was also very good to bring to the Health Plan meeting, and I also printed out the school pamplet on the CFRI website- a great resource for any of us, educators or not.
<br />I had to do some educating where this was concerned. The other child with CF was known to have it all along and Emily wasn't dx'ed until 2nd grade. (We are fortunate that they hadn't ever been in the same class- though with 9 classes in each grade, that wasn't too surprising.) I had to hear from the school nurse all the time how healthy this other child was and how she 'never missed a day of school' blah blah blah. It was SO FRUSTRATING. I was happy for this other child- really, I was, but she was all that Emily was not and it was difficult to hear. So education on how different all kids with cf can be is paramount. We had a very helpful letter from clinic covering all aspects of school and cf that was also very good to bring to the Health Plan meeting, and I also printed out the school pamplet on the CFRI website- a great resource for any of us, educators or not.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lissajane22</b></i>
Why is this such a big deal? Relax!
O-V-E-R-R-E-A-C-T-I-O-N!!!!!!</end quote></div>
There's a reason there are no longer any CF camps anymore. I also seem to recall a parent who was concerned because the other child in the class had cepacia and got a similar response about overreacting.
Lissa, has your doctor or clinic spoken to you about the crosscontamination issue at all?
Why is this such a big deal? Relax!
O-V-E-R-R-E-A-C-T-I-O-N!!!!!!</end quote></div>
There's a reason there are no longer any CF camps anymore. I also seem to recall a parent who was concerned because the other child in the class had cepacia and got a similar response about overreacting.
Lissa, has your doctor or clinic spoken to you about the crosscontamination issue at all?
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lissajane22</b></i>
Why is this such a big deal? Relax!
O-V-E-R-R-E-A-C-T-I-O-N!!!!!!</end quote>
There's a reason there are no longer any CF camps anymore. I also seem to recall a parent who was concerned because the other child in the class had cepacia and got a similar response about overreacting.
Lissa, has your doctor or clinic spoken to you about the crosscontamination issue at all?
Why is this such a big deal? Relax!
O-V-E-R-R-E-A-C-T-I-O-N!!!!!!</end quote>
There's a reason there are no longer any CF camps anymore. I also seem to recall a parent who was concerned because the other child in the class had cepacia and got a similar response about overreacting.
Lissa, has your doctor or clinic spoken to you about the crosscontamination issue at all?
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lissajane22</b></i>
<br />
<br />Why is this such a big deal? Relax!
<br />
<br />
<br />
<br />O-V-E-R-R-E-A-C-T-I-O-N!!!!!!</end quote>
<br />
<br />There's a reason there are no longer any CF camps anymore. I also seem to recall a parent who was concerned because the other child in the class had cepacia and got a similar response about overreacting.
<br />
<br />Lissa, has your doctor or clinic spoken to you about the crosscontamination issue at all?
<br />
<br />Why is this such a big deal? Relax!
<br />
<br />
<br />
<br />O-V-E-R-R-E-A-C-T-I-O-N!!!!!!</end quote>
<br />
<br />There's a reason there are no longer any CF camps anymore. I also seem to recall a parent who was concerned because the other child in the class had cepacia and got a similar response about overreacting.
<br />
<br />Lissa, has your doctor or clinic spoken to you about the crosscontamination issue at all?
Why is this such a big deal????
It's called cepatia and it killed my sister!!
We are her for support and ideas not your bull sh&* reply!
If there is a chance to prolong my daughters life I am going to do it!
I am here looking for advice not your obviously careless uneducated opion!
It's called cepatia and it killed my sister!!
We are her for support and ideas not your bull sh&* reply!
If there is a chance to prolong my daughters life I am going to do it!
I am here looking for advice not your obviously careless uneducated opion!
Why is this such a big deal????
It's called cepatia and it killed my sister!!
We are her for support and ideas not your bull sh&* reply!
If there is a chance to prolong my daughters life I am going to do it!
I am here looking for advice not your obviously careless uneducated opion!
It's called cepatia and it killed my sister!!
We are her for support and ideas not your bull sh&* reply!
If there is a chance to prolong my daughters life I am going to do it!
I am here looking for advice not your obviously careless uneducated opion!
Why is this such a big deal????
<br />
<br />It's called cepatia and it killed my sister!!
<br />
<br />We are her for support and ideas not your bull sh&* reply!
<br />
<br />If there is a chance to prolong my daughters life I am going to do it!
<br />
<br />I am here looking for advice not your obviously careless uneducated opion!
<br />
<br />It's called cepatia and it killed my sister!!
<br />
<br />We are her for support and ideas not your bull sh&* reply!
<br />
<br />If there is a chance to prolong my daughters life I am going to do it!
<br />
<br />I am here looking for advice not your obviously careless uneducated opion!
I see the concerns about the health and contamination... however how lucky for the kid to know somebody else at that school that is like them? One of my daughters biggest complaint is that she is the only one. She doesn't want to swap spit or share and apple with anybody - but just not being the only person with the cough, the pills, the vest, the appts... somebody else that has to deal with it would be pretty cool in her eyes. She wouldn't be alone.
I have dreamed about adopting a CFer once my daughter is an adult - I think that my family and especially my daughter have a lot to offer to a child with the disease. Then they could have what she didn't - somebody like her in the family.
That said I would sure as heck make sure they santized and monitored contact. And I wouldn't have them sleeping over or anything - but I am just thinking of the hallway and passing by with a little wave of their mutually clubbed fingers. They would be special and it would be like a secret club. Two kids encouraged to gain weight and eat fat and carbs...
I have dreamed about adopting a CFer once my daughter is an adult - I think that my family and especially my daughter have a lot to offer to a child with the disease. Then they could have what she didn't - somebody like her in the family.
That said I would sure as heck make sure they santized and monitored contact. And I wouldn't have them sleeping over or anything - but I am just thinking of the hallway and passing by with a little wave of their mutually clubbed fingers. They would be special and it would be like a secret club. Two kids encouraged to gain weight and eat fat and carbs...
I see the concerns about the health and contamination... however how lucky for the kid to know somebody else at that school that is like them? One of my daughters biggest complaint is that she is the only one. She doesn't want to swap spit or share and apple with anybody - but just not being the only person with the cough, the pills, the vest, the appts... somebody else that has to deal with it would be pretty cool in her eyes. She wouldn't be alone.
I have dreamed about adopting a CFer once my daughter is an adult - I think that my family and especially my daughter have a lot to offer to a child with the disease. Then they could have what she didn't - somebody like her in the family.
That said I would sure as heck make sure they santized and monitored contact. And I wouldn't have them sleeping over or anything - but I am just thinking of the hallway and passing by with a little wave of their mutually clubbed fingers. They would be special and it would be like a secret club. Two kids encouraged to gain weight and eat fat and carbs...
I have dreamed about adopting a CFer once my daughter is an adult - I think that my family and especially my daughter have a lot to offer to a child with the disease. Then they could have what she didn't - somebody like her in the family.
That said I would sure as heck make sure they santized and monitored contact. And I wouldn't have them sleeping over or anything - but I am just thinking of the hallway and passing by with a little wave of their mutually clubbed fingers. They would be special and it would be like a secret club. Two kids encouraged to gain weight and eat fat and carbs...
I see the concerns about the health and contamination... however how lucky for the kid to know somebody else at that school that is like them? One of my daughters biggest complaint is that she is the only one. She doesn't want to swap spit or share and apple with anybody - but just not being the only person with the cough, the pills, the vest, the appts... somebody else that has to deal with it would be pretty cool in her eyes. She wouldn't be alone.
<br />
<br />I have dreamed about adopting a CFer once my daughter is an adult - I think that my family and especially my daughter have a lot to offer to a child with the disease. Then they could have what she didn't - somebody like her in the family.
<br />
<br />That said I would sure as heck make sure they santized and monitored contact. And I wouldn't have them sleeping over or anything - but I am just thinking of the hallway and passing by with a little wave of their mutually clubbed fingers. They would be special and it would be like a secret club. Two kids encouraged to gain weight and eat fat and carbs...
<br />
<br />I have dreamed about adopting a CFer once my daughter is an adult - I think that my family and especially my daughter have a lot to offer to a child with the disease. Then they could have what she didn't - somebody like her in the family.
<br />
<br />That said I would sure as heck make sure they santized and monitored contact. And I wouldn't have them sleeping over or anything - but I am just thinking of the hallway and passing by with a little wave of their mutually clubbed fingers. They would be special and it would be like a secret club. Two kids encouraged to gain weight and eat fat and carbs...
I agree lempi, we need to post with respect and decency. There is NO reason for rudeness when people are here looking for support.
eta> Treewife, my dd knows there is another child at her school w/cf. She doesn't talk about it much, but I do think she likes knowing she's not the only one, even though she never sees her. <img src="i/expressions/face-icon-small-smile.gif" border="0">
eta> Treewife, my dd knows there is another child at her school w/cf. She doesn't talk about it much, but I do think she likes knowing she's not the only one, even though she never sees her. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I agree lempi, we need to post with respect and decency. There is NO reason for rudeness when people are here looking for support.
eta> Treewife, my dd knows there is another child at her school w/cf. She doesn't talk about it much, but I do think she likes knowing she's not the only one, even though she never sees her. <img src="i/expressions/face-icon-small-smile.gif" border="0">
eta> Treewife, my dd knows there is another child at her school w/cf. She doesn't talk about it much, but I do think she likes knowing she's not the only one, even though she never sees her. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I agree lempi, we need to post with respect and decency. There is NO reason for rudeness when people are here looking for support.
<br />
<br />eta> Treewife, my dd knows there is another child at her school w/cf. She doesn't talk about it much, but I do think she likes knowing she's not the only one, even though she never sees her. <img src="i/expressions/face-icon-small-smile.gif" border="0">
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<br />eta> Treewife, my dd knows there is another child at her school w/cf. She doesn't talk about it much, but I do think she likes knowing she's not the only one, even though she never sees her. <img src="i/expressions/face-icon-small-smile.gif" border="0">
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