Re: THANK YOU!!!!---&Jerry

[Guest guest]

,

I didn't know Bri had the g/j tube. MacKenzie Colp (Jeanie's girl) also had this done and it was unsuccessful for her. They told Jeanie they didn't do fundo's here (untrue. they did Kennedy a couple months before - this was before Jeanie & I really knew each other) and she HAD to have the j tube. They also told me this as well, but I fought for the fundo so she wouldn't have to be on a pump all the time and could have bolus feeds. Anyway, they told Jeanie this was the only thing that would STOP the reflux and it didn't. After the tube went in, she started refluxing up her stomach secretions and it's awful - she gags on them through the night and really struggles with them. (they just were here for a visit a couple weeks ago and I was in tears at night time listening to her struggle) I hope things continue to work out for na and her tube, I think this was the first g/j tube they did here - Jeanie had to call away to the States to get one sent up here so they could do it. So, maybe the placement isn't the greatest or something. Who knows...

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

THANK YOU!!!!

I wanted to say thank you to everyone with their warm and gracious welcome! It is nice to know that there are people out there to talk to and who knows where I have been and where I am headed. Reading everyones e-mails has given me so much hope and assurance for the future. Just knowing that I am not alone is such a blessing, although I wish no one ever had to go through this. My daughter Eileen will probably have her surgery for he g-tube and nissen fundoplication wrap with a week. I thought I was scared about the surgery for the choanal atresia, this is about to scare the pants off me!! I know that this is what she needs but I hate to see her go through it. I can say that my heart and my world has opened up so much since she has been born and I do not think I would know what to do with out her. She has taught me so much about unconditional love and that miracle really do happen! Again I just want to say thank you to everyone and I am so happy that I found this new family out there. , Jerry, Marissa 9, Christian 3, Eileen 47 days CHArgEKnoxville, TNFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org