New to CF

[1stladyb]

My granddaughter, Reese, was diagnosed at birth with cf. Could someone please advise what books or any information that can help me with this disease.

Reese is now 7 months old and I haven't seen much improvement or any relief of her breathing or any weight gain. She did gain a little weight, but she is still only 13 lbs. She has learning to pull her feeding tube out so now tests are being run on her this week to see about putting in a "g" tube.

They live many hours away from me and I only hear what is going on via phone. I need more understanding of everything, but can only get a little out of parents over phone.

Like before someone please advise of a book or somewhere to get tons of info. Thanks so much. And please say a prayer for my sweet baby Reese.

A very concerned grandmother who loves her baby girl very much!!!

 

[1stladyb]

My granddaughter, Reese, was diagnosed at birth with cf. Could someone please advise what books or any information that can help me with this disease.

Reese is now 7 months old and I haven't seen much improvement or any relief of her breathing or any weight gain. She did gain a little weight, but she is still only 13 lbs. She has learning to pull her feeding tube out so now tests are being run on her this week to see about putting in a "g" tube.

They live many hours away from me and I only hear what is going on via phone. I need more understanding of everything, but can only get a little out of parents over phone.

Like before someone please advise of a book or somewhere to get tons of info. Thanks so much. And please say a prayer for my sweet baby Reese.

A very concerned grandmother who loves her baby girl very much!!!

 

[1stladyb]

My granddaughter, Reese, was diagnosed at birth with cf. Could someone please advise what books or any information that can help me with this disease.

Reese is now 7 months old and I haven't seen much improvement or any relief of her breathing or any weight gain. She did gain a little weight, but she is still only 13 lbs. She has learning to pull her feeding tube out so now tests are being run on her this week to see about putting in a "g" tube.

They live many hours away from me and I only hear what is going on via phone. I need more understanding of everything, but can only get a little out of parents over phone.

Like before someone please advise of a book or somewhere to get tons of info. Thanks so much. And please say a prayer for my sweet baby Reese.

A very concerned grandmother who loves her baby girl very much!!!

 

[Jane]

Welcome Julie, this site is a wonderful start for information and support. There are lots of others in your place who can give you good advice.

On the main page of this site they have a library with books about cf. There are also sites that will help. The Cystic Fibrosis Foundation site is very good (www.cff.org).

If you have questions, ask us anything!!! Usually someone here will have the answer.

Best wishes to baby Reece!

 

[Jane]

Welcome Julie, this site is a wonderful start for information and support. There are lots of others in your place who can give you good advice.

On the main page of this site they have a library with books about cf. There are also sites that will help. The Cystic Fibrosis Foundation site is very good (www.cff.org).

If you have questions, ask us anything!!! Usually someone here will have the answer.

Best wishes to baby Reece!

 

[Jane]

Welcome Julie, this site is a wonderful start for information and support. There are lots of others in your place who can give you good advice.

On the main page of this site they have a library with books about cf. There are also sites that will help. The Cystic Fibrosis Foundation site is very good (www.cff.org).

If you have questions, ask us anything!!! Usually someone here will have the answer.

Best wishes to baby Reece!

 

[ktsmom]

I was given a book that I've found incredibly informative - "Cystic Fibrosis Third Edition, A Guide for Patient and Family" by David M. Orenstein, M.D." It was published by Lippincott Williams & Wilkins.

I'm sorry I don't know how to go about getting it on your own, as our speciality CF pharmacy (CF Solutions) here in Oklahoma gave it to me.

Also I have learned and continue to learn every day from the people on this forum. They will hold you up when you feel down.

Your grandbaby is lucky to have you - that you are so concerned and want to be well-informed. I will keep Reese and you and your family in my prayers.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

I was given a book that I've found incredibly informative - "Cystic Fibrosis Third Edition, A Guide for Patient and Family" by David M. Orenstein, M.D." It was published by Lippincott Williams & Wilkins.

I'm sorry I don't know how to go about getting it on your own, as our speciality CF pharmacy (CF Solutions) here in Oklahoma gave it to me.

Also I have learned and continue to learn every day from the people on this forum. They will hold you up when you feel down.

Your grandbaby is lucky to have you - that you are so concerned and want to be well-informed. I will keep Reese and you and your family in my prayers.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

I was given a book that I've found incredibly informative - "Cystic Fibrosis Third Edition, A Guide for Patient and Family" by David M. Orenstein, M.D." It was published by Lippincott Williams & Wilkins.

I'm sorry I don't know how to go about getting it on your own, as our speciality CF pharmacy (CF Solutions) here in Oklahoma gave it to me.

Also I have learned and continue to learn every day from the people on this forum. They will hold you up when you feel down.

Your grandbaby is lucky to have you - that you are so concerned and want to be well-informed. I will keep Reese and you and your family in my prayers.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[1stladyb]

Thank you Jane! I will certainly check all the sites out. I appreciate you responding. I want and need all the advise and help I can get. I feel so helpless with them in Virginia and me here in Tennessee. I want to learn as much as I can to pass along things to them to give Reese all the best. Thanks again Jane. Good luck to you and your children. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[1stladyb]

Thank you Jane! I will certainly check all the sites out. I appreciate you responding. I want and need all the advise and help I can get. I feel so helpless with them in Virginia and me here in Tennessee. I want to learn as much as I can to pass along things to them to give Reese all the best. Thanks again Jane. Good luck to you and your children. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[1stladyb]

Thank you Jane! I will certainly check all the sites out. I appreciate you responding. I want and need all the advise and help I can get. I feel so helpless with them in Virginia and me here in Tennessee. I want to learn as much as I can to pass along things to them to give Reese all the best. Thanks again Jane. Good luck to you and your children. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JazzysMom]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/books.cfm
">http://www.cysticfibrosis.com/books.cfm
</a>
This is the link to the page on this forum with different books. Many of them are probably available at your local library if you dont wish to purchase them. I know David Orensteins books are available at mine. Good Luck & PLEASE ask any ??? you have. No matter how small they seem~!

 

[JazzysMom]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/books.cfm
">http://www.cysticfibrosis.com/books.cfm
</a>
This is the link to the page on this forum with different books. Many of them are probably available at your local library if you dont wish to purchase them. I know David Orensteins books are available at mine. Good Luck & PLEASE ask any ??? you have. No matter how small they seem~!

 

[JazzysMom]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/books.cfm
">http://www.cysticfibrosis.com/books.cfm
</a>
This is the link to the page on this forum with different books. Many of them are probably available at your local library if you dont wish to purchase them. I know David Orensteins books are available at mine. Good Luck & PLEASE ask any ??? you have. No matter how small they seem~!

 

[1stladyb]

Thank you Dana!! I will try the bookstores to find this book. I thank you for your sweet comment. I do want so much to be informed about this so I can pass on anything and everything I learn on to my son and daughter in law, so Reese can have the best she can. I am in Tennessee and they are in Virginia and I feel helpless. I want so much to help with her treatments and hold my precious granddaughter. It is rough. Anyway, Thanks again Dana and your sweet Katy is in my prayers as well as her big sister. Happy New Year!!

 

[1stladyb]

Thank you Dana!! I will try the bookstores to find this book. I thank you for your sweet comment. I do want so much to be informed about this so I can pass on anything and everything I learn on to my son and daughter in law, so Reese can have the best she can. I am in Tennessee and they are in Virginia and I feel helpless. I want so much to help with her treatments and hold my precious granddaughter. It is rough. Anyway, Thanks again Dana and your sweet Katy is in my prayers as well as her big sister. Happy New Year!!

 

[1stladyb]

Thank you Dana!! I will try the bookstores to find this book. I thank you for your sweet comment. I do want so much to be informed about this so I can pass on anything and everything I learn on to my son and daughter in law, so Reese can have the best she can. I am in Tennessee and they are in Virginia and I feel helpless. I want so much to help with her treatments and hold my precious granddaughter. It is rough. Anyway, Thanks again Dana and your sweet Katy is in my prayers as well as her big sister. Happy New Year!!

 

[1stladyb]

Melissa,

Thanks so much for the invitation to ask ??? no matter how small they seem. I have many questions. And thanks so much for the link. I will find much material here to help my Reese. Can you give me any information about this "G" tube they are wanting to put in her stomach? The feeding tube thru her nose hasn't helped. To me it sounds like it would help her more and not be so painful for her. Also since October she has really coughed so much more and can't get rid of it. I know she will cough alot but is like she has rsv along with it or something. I say rsv because Christmas they were here and my 8 month grandson that lives here in town (no cf) developed rsv 2 days after she left. The kids tell me she has gotten the rsv shots. Hopefully this week while she is in the hospital they will find something in the tests. Honey, I could go on and on but I will just hit you with a couple questions at a time.<img src="i/expressions/face-icon-small-smile.gif" border="0">LOL. Happy New Year to you and your family!!!

 

[1stladyb]

Melissa,

Thanks so much for the invitation to ask ??? no matter how small they seem. I have many questions. And thanks so much for the link. I will find much material here to help my Reese. Can you give me any information about this "G" tube they are wanting to put in her stomach? The feeding tube thru her nose hasn't helped. To me it sounds like it would help her more and not be so painful for her. Also since October she has really coughed so much more and can't get rid of it. I know she will cough alot but is like she has rsv along with it or something. I say rsv because Christmas they were here and my 8 month grandson that lives here in town (no cf) developed rsv 2 days after she left. The kids tell me she has gotten the rsv shots. Hopefully this week while she is in the hospital they will find something in the tests. Honey, I could go on and on but I will just hit you with a couple questions at a time.<img src="i/expressions/face-icon-small-smile.gif" border="0">LOL. Happy New Year to you and your family!!!