New to CF

[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!!!

 

[Jane]

Julie, I just sent you a Private Message about g-tubes so I won't take up so much room on this thread. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jane]

Julie, I just sent you a Private Message about g-tubes so I won't take up so much room on this thread. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jane]

Julie, I just sent you a Private Message about g-tubes so I won't take up so much room on this thread. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JazzysMom]

I dont have a lot of personal knowledge on the g tube, but we have tons of people on here that do including Jane who offered to PM. I am sure others will give their input also. There isnt too much you can ask about that SOMEONE cant answer. Happy New Year to you also!

 

[JazzysMom]

I dont have a lot of personal knowledge on the g tube, but we have tons of people on here that do including Jane who offered to PM. I am sure others will give their input also. There isnt too much you can ask about that SOMEONE cant answer. Happy New Year to you also!

 

[JazzysMom]

I dont have a lot of personal knowledge on the g tube, but we have tons of people on here that do including Jane who offered to PM. I am sure others will give their input also. There isnt too much you can ask about that SOMEONE cant answer. Happy New Year to you also!

 

[ddawes27]

1stladyb,
I have the Orenstein book as well, but mine says complements of AXCAN PHARMA
Their website is <a target=_blank class=ftalternatingbarlinklarge href="http://www.axcanscandipharm.com/,">http://www.axcanscandipharm.com/,</a> maybe you could ask them. Also you could ask your daughter/son to ask for an extra copy from the doctor (thats where I got mine). This book really is the best resource for C.F. It is written so that anybody can understand it.
Doreen

 

[ddawes27]

1stladyb,
I have the Orenstein book as well, but mine says complements of AXCAN PHARMA
Their website is <a target=_blank class=ftalternatingbarlinklarge href="http://www.axcanscandipharm.com/,">http://www.axcanscandipharm.com/,</a> maybe you could ask them. Also you could ask your daughter/son to ask for an extra copy from the doctor (thats where I got mine). This book really is the best resource for C.F. It is written so that anybody can understand it.
Doreen

 

[ddawes27]

1stladyb,
I have the Orenstein book as well, but mine says complements of AXCAN PHARMA
Their website is <a target=_blank class=ftalternatingbarlinklarge href="http://www.axcanscandipharm.com/,">http://www.axcanscandipharm.com/,</a> maybe you could ask them. Also you could ask your daughter/son to ask for an extra copy from the doctor (thats where I got mine). This book really is the best resource for C.F. It is written so that anybody can understand it.
Doreen

 

[1stladyb]

Thank you so much for the info Doreen. I will check this out and also have my son check with Reese's doctor and she if he has a copy. The kids just called me to wish me a Happy New Year's. They kept Reese in the hospital for another week. They have to get her well before the can put the "g" tube in. Please say a prayer for my baby girl. 2007 is going to be a better year for them!!! Thanks for responding on New Years Eve.

HAPPY NEW YEAR!!!!!
Julie

 

[1stladyb]

Thank you so much for the info Doreen. I will check this out and also have my son check with Reese's doctor and she if he has a copy. The kids just called me to wish me a Happy New Year's. They kept Reese in the hospital for another week. They have to get her well before the can put the "g" tube in. Please say a prayer for my baby girl. 2007 is going to be a better year for them!!! Thanks for responding on New Years Eve.

HAPPY NEW YEAR!!!!!
Julie

 

[1stladyb]

Thank you so much for the info Doreen. I will check this out and also have my son check with Reese's doctor and she if he has a copy. The kids just called me to wish me a Happy New Year's. They kept Reese in the hospital for another week. They have to get her well before the can put the "g" tube in. Please say a prayer for my baby girl. 2007 is going to be a better year for them!!! Thanks for responding on New Years Eve.

HAPPY NEW YEAR!!!!!
Julie

 

[Augustmom0003]

Julie...

Not much to say except my thoughts and prayers are with you, your granddaughter and family. I will say, the first year is very, very hard...not just for the patient...but for the parents. Emotionally, physically...just about in every way....

It's so wonderful that you care enough to get on here and ask questions...a lot of family members just go into denial and the parents are left pretty much alone. It's very hard to feel isolated like that. So...you coming here is a big step in helping them!!!

Like Melissa said...ask away. No question is a bad question!!!!

Thoughts and prayers,

 

[Augustmom0003]

Julie...

Not much to say except my thoughts and prayers are with you, your granddaughter and family. I will say, the first year is very, very hard...not just for the patient...but for the parents. Emotionally, physically...just about in every way....

It's so wonderful that you care enough to get on here and ask questions...a lot of family members just go into denial and the parents are left pretty much alone. It's very hard to feel isolated like that. So...you coming here is a big step in helping them!!!

Like Melissa said...ask away. No question is a bad question!!!!

Thoughts and prayers,

 

[Augustmom0003]

Julie...

Not much to say except my thoughts and prayers are with you, your granddaughter and family. I will say, the first year is very, very hard...not just for the patient...but for the parents. Emotionally, physically...just about in every way....

It's so wonderful that you care enough to get on here and ask questions...a lot of family members just go into denial and the parents are left pretty much alone. It's very hard to feel isolated like that. So...you coming here is a big step in helping them!!!

Like Melissa said...ask away. No question is a bad question!!!!

Thoughts and prayers,

 

[1stladyb]

Thank you so much Amanda for your support! It means alot to me. Your sweetface Ethan is adorable. Hope he is doing great. Happy New Year to you and your family. Thanks Amanda!!

Julie<img src="i/expressions/rose.gif" border="0">

 

[1stladyb]

Thank you so much Amanda for your support! It means alot to me. Your sweetface Ethan is adorable. Hope he is doing great. Happy New Year to you and your family. Thanks Amanda!!

Julie<img src="i/expressions/rose.gif" border="0">

 

[1stladyb]

Thank you so much Amanda for your support! It means alot to me. Your sweetface Ethan is adorable. Hope he is doing great. Happy New Year to you and your family. Thanks Amanda!!

Julie<img src="i/expressions/rose.gif" border="0">

 

[Mommafirst]

Julie,

I don't have much to offer, the others have covered some of the best resources, but I wanted to say how incredibly wonderful it is to see a grandmother seeking out this information. We have several wonderful grandparents on this site doing the same as you. I only wish my ILs were as interested in understanding all that is going on.

Best of luck to you and your little Reese (I have a Reese too!!!)