Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hi Dawn! Jordan did not have a tube. Feeding was a nightmare!!! She was not diagnosed with RSS until right before her cleft surgery. Once her cleft was repaired feeding got alot easier....she actually started carrying a bottle around after that!! We would literally squeeze her formula into her mouth, slowly, so that it wouldn't come back up through her nose!! If you would like to talk off-line my telephone number is . We live in California. Where do you live? Jordan's picture is not posted. Have you contacted the MAGIC foundation? They are a wonderful resource. Take Care - Passaglia In a message dated 1/3/03 9:20:39 AM Pacific Standard Time, cdgrover@... writes: > Hi - > Thanks for responding. Emilia will be about 15 or 16 months also when > her palate will be repaired. I never realized that the palate surgery can > be > more then one repair. How did your daughter do with eating (when she was a > infant before her repair)? Or did she have a tube? I haven't checked the > pictures. Is your daughter on there? > Dawn Grover > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hi - Thanks for responding. Emilia will be about 15 or 16 months also when her palate will be repaired. I never realized that the palate surgery can be more then one repair. How did your daughter do with eating (when she was a infant before her repair)? Or did she have a tube? I haven't checked the pictures. Is your daughter on there? Dawn Grover Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hi - Jordan sounds like Emilia to the tee! We had to literally squeeze the formula into her mouth as well. Now she drinks from a sippy cup (well we pour it in) and when she doesn't want it out the mouth it comes. She isn't interested in baby food. We just started giving her pedisure. So hopefully that will help a little. I have checked the magic foundation. We're still not sure Emilia has RSS. Rss was just brought to our attention from a kidney doctor in October. Every other doctor was stumped and blamed part of it on her cleft. Now we're at the point were we want to find out. We're trying to push for her surgery to be sooner in hope that she will then gain. I guess only time will tell. Thanks for your #. I will use it.We live in NY. Dawn Grover Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Dawn, If you live in NY, why don't you go to see Dr. Harbison? She is in NYC at Cornell, on East 68th Street. She can tell you if your daughter has RSS or not - and she can still help her even if she does not. She treats all sorts of growth disorders. I don't remember....was she born SGA or IUGR? There are many similarities between RSS and those two conditions. The treatment is basically the same. If you would like her phone number, let me know. Or I can give it to you now....it's . I know she is going away between February 18 and March something. She always takes a three week trip to Hawaii. But she stays in touch via email, so she is never that far away. Just a thought. It might help you get a better handle on things. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Jodi, Thanks for the info. I live in the buffalo so it's about a 7 or 8 hour drive. I will see what happens Monday with the genetic doctor and decide if it's worth the trip. Do you know any closer? Like in the western new york area? Do you live in NY? Have you seen Dr. Habson? Emilia was IUGR. What does SGA stand for? Dawn Grover Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hi Dawn, With Jodi not feeling good, I don't know that she'll be able to answer right away, and for once, this is something I know! My name is Pat and I am grandma to . SGA stands for Small for Gestational Age, and as far as I know, all RSS kids are. Hope that helps! Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Hi Pat- Thanks for answering. Emilia is SGA then. I have been following your posts about . My prayers are with you. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 Hi Dawn, Thanks. This weekend will tell the tale. If they can lower the PEEP, and he tolerates it, then we are on the way to bringing him home! It's exciting, tense, and worrisome, all it one! Pat (g-ma to Quote Link to comment Share on other sites More sharing options...
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