debcroghan
New member
It great to hear about other kids dealing with cf. Does he have any problem,s with illness attending public school?
My son wants to talk about CF at school tomorrow! :)
- Thread starter hmw
- Start date
debcroghan
New member
It great to hear about other kids dealing with cf. Does he have any problem,s with illness attending public school?
debcroghan
New member
It great to hear about other kids dealing with cf. Does he have any problem,s with illness attending public school?
debcroghan
New member
It great to hear about other kids dealing with cf. Does he have any problem,s with illness attending public school?
debcroghan
New member
It great to hear about other kids dealing with cf. Does he have any problem,s with illness attending public school?
It is still a bit hard to tell how their pattern of illness has potentially been affected, since Emily was only dx'ed last November (she is in 3rd grade) and we still do not know for sure Shawn's status. As preventative treatment is so crucial for those with CF I really hope we can make some kind of determination with him sometime soon. Emily has always gotten sick quite frequently (she's missed about of 35 days of school the last couple yrs), but as she never had her illnesses managed properly prior to dx it's hard to give her long term hx a fair assessment. She has definitely been ill more often than either of her brothers. Shawn has chronic sinusitis-type symptoms that go on year round whether or not school is in session. I am nervous with how much flu will likely be going around this year, although there was an outbreak of h1n1 at the middle school last spring and Shawn came out completely unscathed.
Shawn's teacher encouraged him to share more about CF when they learn about genetics in a couple weeks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll make sure to find him a good article & chart showing how CF is inherited in an autosomal recessive manner.
Karla, how heartbreaking! I wonder if there are some articles or printouts that Makailyn can bring to school to share with her teachers, nurse and to leave at the desk for the sub folder that might educate about CF so she wouldn't feel so 'lonely' about this. It's so sad when our kids are so little and feel so alone in their struggles. Maybe she could even make a card for them to go with the articles (i.e. 'Here is what I would like you to know about my 65 roses...' and a picture) if she feels like she WANTS to speak up for herself but doesn't know how; otherwise of course you could just provide the information. Unless of course that has already been done, in which case it's really sad if they are still so uninformed about her basic needs!
Shawn's teacher encouraged him to share more about CF when they learn about genetics in a couple weeks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll make sure to find him a good article & chart showing how CF is inherited in an autosomal recessive manner.
Karla, how heartbreaking! I wonder if there are some articles or printouts that Makailyn can bring to school to share with her teachers, nurse and to leave at the desk for the sub folder that might educate about CF so she wouldn't feel so 'lonely' about this. It's so sad when our kids are so little and feel so alone in their struggles. Maybe she could even make a card for them to go with the articles (i.e. 'Here is what I would like you to know about my 65 roses...' and a picture) if she feels like she WANTS to speak up for herself but doesn't know how; otherwise of course you could just provide the information. Unless of course that has already been done, in which case it's really sad if they are still so uninformed about her basic needs!
It is still a bit hard to tell how their pattern of illness has potentially been affected, since Emily was only dx'ed last November (she is in 3rd grade) and we still do not know for sure Shawn's status. As preventative treatment is so crucial for those with CF I really hope we can make some kind of determination with him sometime soon. Emily has always gotten sick quite frequently (she's missed about of 35 days of school the last couple yrs), but as she never had her illnesses managed properly prior to dx it's hard to give her long term hx a fair assessment. She has definitely been ill more often than either of her brothers. Shawn has chronic sinusitis-type symptoms that go on year round whether or not school is in session. I am nervous with how much flu will likely be going around this year, although there was an outbreak of h1n1 at the middle school last spring and Shawn came out completely unscathed.
Shawn's teacher encouraged him to share more about CF when they learn about genetics in a couple weeks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll make sure to find him a good article & chart showing how CF is inherited in an autosomal recessive manner.
Karla, how heartbreaking! I wonder if there are some articles or printouts that Makailyn can bring to school to share with her teachers, nurse and to leave at the desk for the sub folder that might educate about CF so she wouldn't feel so 'lonely' about this. It's so sad when our kids are so little and feel so alone in their struggles. Maybe she could even make a card for them to go with the articles (i.e. 'Here is what I would like you to know about my 65 roses...' and a picture) if she feels like she WANTS to speak up for herself but doesn't know how; otherwise of course you could just provide the information. Unless of course that has already been done, in which case it's really sad if they are still so uninformed about her basic needs!
Shawn's teacher encouraged him to share more about CF when they learn about genetics in a couple weeks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll make sure to find him a good article & chart showing how CF is inherited in an autosomal recessive manner.
Karla, how heartbreaking! I wonder if there are some articles or printouts that Makailyn can bring to school to share with her teachers, nurse and to leave at the desk for the sub folder that might educate about CF so she wouldn't feel so 'lonely' about this. It's so sad when our kids are so little and feel so alone in their struggles. Maybe she could even make a card for them to go with the articles (i.e. 'Here is what I would like you to know about my 65 roses...' and a picture) if she feels like she WANTS to speak up for herself but doesn't know how; otherwise of course you could just provide the information. Unless of course that has already been done, in which case it's really sad if they are still so uninformed about her basic needs!
It is still a bit hard to tell how their pattern of illness has potentially been affected, since Emily was only dx'ed last November (she is in 3rd grade) and we still do not know for sure Shawn's status. As preventative treatment is so crucial for those with CF I really hope we can make some kind of determination with him sometime soon. Emily has always gotten sick quite frequently (she's missed about of 35 days of school the last couple yrs), but as she never had her illnesses managed properly prior to dx it's hard to give her long term hx a fair assessment. She has definitely been ill more often than either of her brothers. Shawn has chronic sinusitis-type symptoms that go on year round whether or not school is in session. I am nervous with how much flu will likely be going around this year, although there was an outbreak of h1n1 at the middle school last spring and Shawn came out completely unscathed.
Shawn's teacher encouraged him to share more about CF when they learn about genetics in a couple weeks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll make sure to find him a good article & chart showing how CF is inherited in an autosomal recessive manner.
Karla, how heartbreaking! I wonder if there are some articles or printouts that Makailyn can bring to school to share with her teachers, nurse and to leave at the desk for the sub folder that might educate about CF so she wouldn't feel so 'lonely' about this. It's so sad when our kids are so little and feel so alone in their struggles. Maybe she could even make a card for them to go with the articles (i.e. 'Here is what I would like you to know about my 65 roses...' and a picture) if she feels like she WANTS to speak up for herself but doesn't know how; otherwise of course you could just provide the information. Unless of course that has already been done, in which case it's really sad if they are still so uninformed about her basic needs!
Shawn's teacher encouraged him to share more about CF when they learn about genetics in a couple weeks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll make sure to find him a good article & chart showing how CF is inherited in an autosomal recessive manner.
Karla, how heartbreaking! I wonder if there are some articles or printouts that Makailyn can bring to school to share with her teachers, nurse and to leave at the desk for the sub folder that might educate about CF so she wouldn't feel so 'lonely' about this. It's so sad when our kids are so little and feel so alone in their struggles. Maybe she could even make a card for them to go with the articles (i.e. 'Here is what I would like you to know about my 65 roses...' and a picture) if she feels like she WANTS to speak up for herself but doesn't know how; otherwise of course you could just provide the information. Unless of course that has already been done, in which case it's really sad if they are still so uninformed about her basic needs!
It is still a bit hard to tell how their pattern of illness has potentially been affected, since Emily was only dx'ed last November (she is in 3rd grade) and we still do not know for sure Shawn's status. As preventative treatment is so crucial for those with CF I really hope we can make some kind of determination with him sometime soon. Emily has always gotten sick quite frequently (she's missed about of 35 days of school the last couple yrs), but as she never had her illnesses managed properly prior to dx it's hard to give her long term hx a fair assessment. She has definitely been ill more often than either of her brothers. Shawn has chronic sinusitis-type symptoms that go on year round whether or not school is in session. I am nervous with how much flu will likely be going around this year, although there was an outbreak of h1n1 at the middle school last spring and Shawn came out completely unscathed.
Shawn's teacher encouraged him to share more about CF when they learn about genetics in a couple weeks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll make sure to find him a good article & chart showing how CF is inherited in an autosomal recessive manner.
Karla, how heartbreaking! I wonder if there are some articles or printouts that Makailyn can bring to school to share with her teachers, nurse and to leave at the desk for the sub folder that might educate about CF so she wouldn't feel so 'lonely' about this. It's so sad when our kids are so little and feel so alone in their struggles. Maybe she could even make a card for them to go with the articles (i.e. 'Here is what I would like you to know about my 65 roses...' and a picture) if she feels like she WANTS to speak up for herself but doesn't know how; otherwise of course you could just provide the information. Unless of course that has already been done, in which case it's really sad if they are still so uninformed about her basic needs!
Shawn's teacher encouraged him to share more about CF when they learn about genetics in a couple weeks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll make sure to find him a good article & chart showing how CF is inherited in an autosomal recessive manner.
Karla, how heartbreaking! I wonder if there are some articles or printouts that Makailyn can bring to school to share with her teachers, nurse and to leave at the desk for the sub folder that might educate about CF so she wouldn't feel so 'lonely' about this. It's so sad when our kids are so little and feel so alone in their struggles. Maybe she could even make a card for them to go with the articles (i.e. 'Here is what I would like you to know about my 65 roses...' and a picture) if she feels like she WANTS to speak up for herself but doesn't know how; otherwise of course you could just provide the information. Unless of course that has already been done, in which case it's really sad if they are still so uninformed about her basic needs!
It is still a bit hard to tell how their pattern of illness has potentially been affected, since Emily was only dx'ed last November (she is in 3rd grade) and we still do not know for sure Shawn's status. As preventative treatment is so crucial for those with CF I really hope we can make some kind of determination with him sometime soon. Emily has always gotten sick quite frequently (she's missed about of 35 days of school the last couple yrs), but as she never had her illnesses managed properly prior to dx it's hard to give her long term hx a fair assessment. She has definitely been ill more often than either of her brothers. Shawn has chronic sinusitis-type symptoms that go on year round whether or not school is in session. I am nervous with how much flu will likely be going around this year, although there was an outbreak of h1n1 at the middle school last spring and Shawn came out completely unscathed.
<br />
<br />Shawn's teacher encouraged him to share more about CF when they learn about genetics in a couple weeks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll make sure to find him a good article & chart showing how CF is inherited in an autosomal recessive manner.
<br />
<br />Karla, how heartbreaking! I wonder if there are some articles or printouts that Makailyn can bring to school to share with her teachers, nurse and to leave at the desk for the sub folder that might educate about CF so she wouldn't feel so 'lonely' about this. It's so sad when our kids are so little and feel so alone in their struggles. Maybe she could even make a card for them to go with the articles (i.e. 'Here is what I would like you to know about my 65 roses...' and a picture) if she feels like she WANTS to speak up for herself but doesn't know how; otherwise of course you could just provide the information. Unless of course that has already been done, in which case it's really sad if they are still so uninformed about her basic needs!
<br />
<br />Shawn's teacher encouraged him to share more about CF when they learn about genetics in a couple weeks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll make sure to find him a good article & chart showing how CF is inherited in an autosomal recessive manner.
<br />
<br />Karla, how heartbreaking! I wonder if there are some articles or printouts that Makailyn can bring to school to share with her teachers, nurse and to leave at the desk for the sub folder that might educate about CF so she wouldn't feel so 'lonely' about this. It's so sad when our kids are so little and feel so alone in their struggles. Maybe she could even make a card for them to go with the articles (i.e. 'Here is what I would like you to know about my 65 roses...' and a picture) if she feels like she WANTS to speak up for herself but doesn't know how; otherwise of course you could just provide the information. Unless of course that has already been done, in which case it's really sad if they are still so uninformed about her basic needs!
LisaGreene
New member
This is SO awesome! I am happy for him (and you). You have a very special young man there to take the risk and initiative. The genetics of CF can be pretty complicated so he must be really smart, too. 
Let us know how it goes.
Karla- how sad for Makailyn- sorry she had to go through that. It can be so hard.... There is a letter on my website that you can use to help educate teachers and subs. Maybe you could have Makailyn keep a copy of it in her desk so that if it comes up again, she just hands it to the sub to read. That has helped us....
Go to www.TipsForCFParents.com and click on "school issues". There are several good resources there including teacher letters and a brochure. I hope this helps!
Let us know how it goes. Karla- how sad for Makailyn- sorry she had to go through that. It can be so hard.... There is a letter on my website that you can use to help educate teachers and subs. Maybe you could have Makailyn keep a copy of it in her desk so that if it comes up again, she just hands it to the sub to read. That has helped us....
Go to www.TipsForCFParents.com and click on "school issues". There are several good resources there including teacher letters and a brochure. I hope this helps!
LisaGreene
New member
This is SO awesome! I am happy for him (and you). You have a very special young man there to take the risk and initiative. The genetics of CF can be pretty complicated so he must be really smart, too. Let us know how it goes.
Karla- how sad for Makailyn- sorry she had to go through that. It can be so hard.... There is a letter on my website that you can use to help educate teachers and subs. Maybe you could have Makailyn keep a copy of it in her desk so that if it comes up again, she just hands it to the sub to read. That has helped us....
Go to www.TipsForCFParents.com and click on "school issues". There are several good resources there including teacher letters and a brochure. I hope this helps!
Let us know how it goes. Karla- how sad for Makailyn- sorry she had to go through that. It can be so hard.... There is a letter on my website that you can use to help educate teachers and subs. Maybe you could have Makailyn keep a copy of it in her desk so that if it comes up again, she just hands it to the sub to read. That has helped us....
Go to www.TipsForCFParents.com and click on "school issues". There are several good resources there including teacher letters and a brochure. I hope this helps!
LisaGreene
New member
This is SO awesome! I am happy for him (and you). You have a very special young man there to take the risk and initiative. The genetics of CF can be pretty complicated so he must be really smart, too. Let us know how it goes.
Karla- how sad for Makailyn- sorry she had to go through that. It can be so hard.... There is a letter on my website that you can use to help educate teachers and subs. Maybe you could have Makailyn keep a copy of it in her desk so that if it comes up again, she just hands it to the sub to read. That has helped us....
Go to www.TipsForCFParents.com and click on "school issues". There are several good resources there including teacher letters and a brochure. I hope this helps!
Let us know how it goes. Karla- how sad for Makailyn- sorry she had to go through that. It can be so hard.... There is a letter on my website that you can use to help educate teachers and subs. Maybe you could have Makailyn keep a copy of it in her desk so that if it comes up again, she just hands it to the sub to read. That has helped us....
Go to www.TipsForCFParents.com and click on "school issues". There are several good resources there including teacher letters and a brochure. I hope this helps!
LisaGreene
New member
This is SO awesome! I am happy for him (and you). You have a very special young man there to take the risk and initiative. The genetics of CF can be pretty complicated so he must be really smart, too. Let us know how it goes.
Karla- how sad for Makailyn- sorry she had to go through that. It can be so hard.... There is a letter on my website that you can use to help educate teachers and subs. Maybe you could have Makailyn keep a copy of it in her desk so that if it comes up again, she just hands it to the sub to read. That has helped us....
Go to www.TipsForCFParents.com and click on "school issues". There are several good resources there including teacher letters and a brochure. I hope this helps!
Let us know how it goes. Karla- how sad for Makailyn- sorry she had to go through that. It can be so hard.... There is a letter on my website that you can use to help educate teachers and subs. Maybe you could have Makailyn keep a copy of it in her desk so that if it comes up again, she just hands it to the sub to read. That has helped us....
Go to www.TipsForCFParents.com and click on "school issues". There are several good resources there including teacher letters and a brochure. I hope this helps!
LisaGreene
New member
This is SO awesome! I am happy for him (and you). You have a very special young man there to take the risk and initiative. The genetics of CF can be pretty complicated so he must be really smart, too. Let us know how it goes.
<br />
<br />Karla- how sad for Makailyn- sorry she had to go through that. It can be so hard.... There is a letter on my website that you can use to help educate teachers and subs. Maybe you could have Makailyn keep a copy of it in her desk so that if it comes up again, she just hands it to the sub to read. That has helped us....
<br />
<br />Go to www.TipsForCFParents.com and click on "school issues". There are several good resources there including teacher letters and a brochure. I hope this helps!
Let us know how it goes. <br />
<br />Karla- how sad for Makailyn- sorry she had to go through that. It can be so hard.... There is a letter on my website that you can use to help educate teachers and subs. Maybe you could have Makailyn keep a copy of it in her desk so that if it comes up again, she just hands it to the sub to read. That has helped us....
<br />
<br />Go to www.TipsForCFParents.com and click on "school issues". There are several good resources there including teacher letters and a brochure. I hope this helps!