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I received my book yesterday. I haven't gotten to read it yet as I got home late...but the quality of the book itself is amazing. Good heavy duty book made for kids!!! Can't wait to get home and read it tonight!! Thank you Jerry!!

I fight this battle every time we get admitted! I now take all of her meds from home except the IV meds of course. I have to sign a waiver and they count and label my daughters meds and then return them to me where I have to keep them locked in the little vault they give you in the room. I...

I am so sorry you are going through this!! While I love and cannot live without the sinus rinse....I want to caution you as to how often you use it. Since you are putting saline (salt) up your nose it can become irritated and dry your sinus' too much causing bleeding. I know because when Abby...

I don't think that it's ready yet

It is totally possible just like triples15 said....it is just very expensive and takes a lot to do. But it is a wonderful option. :)

I just ordered!! I can't wait for Abby to see it!! Thanks Jerry and you really are an inspiration to us all!!

Bill I'm not for sure on this but pretty sure IVF is to ensure that they get a healthy baby with no CF.

Jerry could you tell us a little about the book....like what age range this book would be good for and how many pages? My daughter loves reading books about CF! It appears to be a very upbeat book which I love. Does it maybe have a blurb or something about the book? Sorry for all the...

Well Sarah...we got some bad news yesterday...Abby's last clinic cultures showed that she is now growing MRSA and H-flu again :( We have had so many clean cultures that it is just a small punch in the gut to have that nasty monster back. I know that she will be fine and many have it for years...

I hope that you are worrying for nothing also. But I totally understand about your hubby. While mine is supportive of whatever I do with Abby he doesn't take the initiative and often feels like I worry too much when she gets sick....or get too excited about all the new meds but I honestly...

Oh I totally agree with Aboveallislove! I meant non CF people...but with everything you just said I would for sure get him checked. I am so sorry that you are in limbo and now are having to worry about both kiddos :( Abby's were very pale in color also.

Roy!! That is amazing!! I can't wait to buy my copy!!! Thank you for everything that you and your wife are doing!!! God bless!!

I don't have any information..I just wanted to say good luck!! And many prayers for you!!! Nothing like having a sibling, my kids support and love each other so much! We were lucky that we had Clayton (non cf) before Abby came along...so we didn't have the hard decisions to make as God had...

Abby's team always told us that it was ok if they floated... as most peoples do float, but we needed to pay attention to color and texture....they said as long as they were darker and solid that everything was fine.

That's wonderful!! Love hearing proud grandma's :) Boy I bet mom had her hands busy with Cf twins...but how fun. I always thought it would be fun to have twins as they run in my family...and my Abby actually was a twin but I lost the other one early in the pregnancy. But I asure you God...

I am so glad that you have God in your life! I am just a mom of a CFer, my little one is 7, but I am a wife as well. And I wouldn't care if my husband was the sickest man on the planet I will always be so thankful that he is mine and that I am lucky enough to have his love....sick or not! You...

If you were talking to me... I did not receive one. :)

So you can't tell a difference in cough or sniffles? May I ask how old she is? I'm so sorry.

Yeah she is a double off label being that little...but at least you know that there is Hope for later on!! :) That is terrific about your family! I didn't realize that all of your kiddos were small, I was just thinking if Abby had that low of weight percentile my CF team would of probably...

http://ptct.client.shareholder.com/releasedetail.cfm?ReleaseID=746125 Just so happens that I got this email today and well I'm not sure it really says all that much but you can read it. It acts like they are continuing.