New to CF

M

Mommafirst

Guest
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!!!)
 
M

Mommafirst

Guest
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!!!)
 
1

1stladyb

New member
Heather, your comments are so sweet!! People like you keep others uplifted. I am sure your IL's care more than you know. Like Amanda said before,
some people are in denial. But Heather, keep them informed as much as possible, to make them feel involved. This might help them come around. I hope so anyway.

Good news. I went to the website that Doreen gave me and they are going to send me a cd for an introduction to cystic fibrosis for patients and familes (second edition). I can't wait to receive it. This is also an fyi to all that have responded to my 1st e-mail.

Also info on my Reese. I spoke to her Dad, my son Jason, last night and the surgery for the "G" tube Dec. 29th did not happen. Reese was to sick to put her under. They are running tests and giving her alot of antibiotics to get her healthier. They called me last night at 12:00 to wish me Happy New Years and I heard her in the back ground just a fussing big time. She is tired of them sticking her. They are trying to talk them into putting in a port. My son said, Mom they have stuck her 38 times in her legs and she is so bruised.( I am sure it seems that many) I know they are hurting seeing her go thru this, but I know with all of your prayers and mine she is going to get better and get that "g" tube put in and she is going to gain weight and be a healthier little girl in 2007.

Heather, Happy New year to you and your family. Give your little Alyssa and big hug from me. I am praying for her. Hi, to your Reese and Richie and a hug. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
1

1stladyb

New member
Heather, your comments are so sweet!! People like you keep others uplifted. I am sure your IL's care more than you know. Like Amanda said before,
some people are in denial. But Heather, keep them informed as much as possible, to make them feel involved. This might help them come around. I hope so anyway.

Good news. I went to the website that Doreen gave me and they are going to send me a cd for an introduction to cystic fibrosis for patients and familes (second edition). I can't wait to receive it. This is also an fyi to all that have responded to my 1st e-mail.

Also info on my Reese. I spoke to her Dad, my son Jason, last night and the surgery for the "G" tube Dec. 29th did not happen. Reese was to sick to put her under. They are running tests and giving her alot of antibiotics to get her healthier. They called me last night at 12:00 to wish me Happy New Years and I heard her in the back ground just a fussing big time. She is tired of them sticking her. They are trying to talk them into putting in a port. My son said, Mom they have stuck her 38 times in her legs and she is so bruised.( I am sure it seems that many) I know they are hurting seeing her go thru this, but I know with all of your prayers and mine she is going to get better and get that "g" tube put in and she is going to gain weight and be a healthier little girl in 2007.

Heather, Happy New year to you and your family. Give your little Alyssa and big hug from me. I am praying for her. Hi, to your Reese and Richie and a hug. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
1

1stladyb

New member
Heather, your comments are so sweet!! People like you keep others uplifted. I am sure your IL's care more than you know. Like Amanda said before,
some people are in denial. But Heather, keep them informed as much as possible, to make them feel involved. This might help them come around. I hope so anyway.

Good news. I went to the website that Doreen gave me and they are going to send me a cd for an introduction to cystic fibrosis for patients and familes (second edition). I can't wait to receive it. This is also an fyi to all that have responded to my 1st e-mail.

Also info on my Reese. I spoke to her Dad, my son Jason, last night and the surgery for the "G" tube Dec. 29th did not happen. Reese was to sick to put her under. They are running tests and giving her alot of antibiotics to get her healthier. They called me last night at 12:00 to wish me Happy New Years and I heard her in the back ground just a fussing big time. She is tired of them sticking her. They are trying to talk them into putting in a port. My son said, Mom they have stuck her 38 times in her legs and she is so bruised.( I am sure it seems that many) I know they are hurting seeing her go thru this, but I know with all of your prayers and mine she is going to get better and get that "g" tube put in and she is going to gain weight and be a healthier little girl in 2007.

Heather, Happy New year to you and your family. Give your little Alyssa and big hug from me. I am praying for her. Hi, to your Reese and Richie and a hug. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
C

CowTown

New member
Hi Julie,

Here are some links to more CF info.

A quarterly newsletter:
CF Roundtable
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfroundtable.com/
">http://www.cfroundtable.com/
</a>

Here is a list of CF drugs in the pipeline:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/treatments/Pipeline/#PROTEIN_ASSIST/REPAIR
">http://www.cff.org/treatments/...PROTEIN_ASSIST/REPAIR
</a>
Here is a link to a wealth of CF info:
<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/CF.htm
">http://www3.nbnet.nb.ca/normap/CF.htm
</a>
And of course - you've already found this one! Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

CowTown

New member
Hi Julie,

Here are some links to more CF info.

A quarterly newsletter:
CF Roundtable
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfroundtable.com/
">http://www.cfroundtable.com/
</a>

Here is a list of CF drugs in the pipeline:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/treatments/Pipeline/#PROTEIN_ASSIST/REPAIR
">http://www.cff.org/treatments/...PROTEIN_ASSIST/REPAIR
</a>
Here is a link to a wealth of CF info:
<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/CF.htm
">http://www3.nbnet.nb.ca/normap/CF.htm
</a>
And of course - you've already found this one! Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

CowTown

New member
Hi Julie,

Here are some links to more CF info.

A quarterly newsletter:
CF Roundtable
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfroundtable.com/
">http://www.cfroundtable.com/
</a>

Here is a list of CF drugs in the pipeline:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/treatments/Pipeline/#PROTEIN_ASSIST/REPAIR
">http://www.cff.org/treatments/...PROTEIN_ASSIST/REPAIR
</a>
Here is a link to a wealth of CF info:
<a target=_blank class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/CF.htm
">http://www3.nbnet.nb.ca/normap/CF.htm
</a>
And of course - you've already found this one! Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
1

1stladyb

New member
Oh Thank you so much Kelly,

This is great!! I will certainly pass this on to the kids. They may or may not know about these, but I will pass on. And for myself and daughter, we will check them out. It has been so great finding this forum. Everyone has been so helpful and sweet. It does certainly help to know others are behind you and want to help each other. Thank you everyone. And Kelly that you so much!! Have a great evening. I will, checking out these sites!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
1

1stladyb

New member
Oh Thank you so much Kelly,

This is great!! I will certainly pass this on to the kids. They may or may not know about these, but I will pass on. And for myself and daughter, we will check them out. It has been so great finding this forum. Everyone has been so helpful and sweet. It does certainly help to know others are behind you and want to help each other. Thank you everyone. And Kelly that you so much!! Have a great evening. I will, checking out these sites!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
1

1stladyb

New member
Oh Thank you so much Kelly,

This is great!! I will certainly pass this on to the kids. They may or may not know about these, but I will pass on. And for myself and daughter, we will check them out. It has been so great finding this forum. Everyone has been so helpful and sweet. It does certainly help to know others are behind you and want to help each other. Thank you everyone. And Kelly that you so much!! Have a great evening. I will, checking out these sites!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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