Guest guest Posted May 12, 2005 Report Share Posted May 12, 2005 Hey It is just too weird how and Tori are alike. has the same problem but I just always thought it was her norm. Hmm maybe I should be brining this up to Dr. H on Monday at her visit. B 5 and Kelli 2 3/4 --- jamie xxxx wrote: > So where are you from? It's nice to here from > someone who has experience with RSS, but I have not > heard of any of the problems you are having to deal > with. My daughter is 5 she weighs 30 lbs. she has a > hard time keeping in nutrients, it seems that when > she eats it just runs right through her. There are > times when she has to go to the bathroom even before > she done with dinner. Any nice to here from you. > /mom of Tori 5 RSS and 2 nonrss NY > > > hello > > > Hi, I just happened to stumble across this group> my > name is Leah, I > am 22 and I was born with silver russel syndrome. > I've had a few > questions that no one seems able to answer. I have a > few things that > are odd about me and i'm not sure if they're related > to the SRS > because there is so little knowledge of the > disorder. I was born > without a uterus, ribs over my heart and without one > of my kidneys. > the other thing is i used to have chronic ear > infections and i have > bell's palsey. If anyone knows anything about any of > these things > please write back and well...even if you don't : ) > have a good day > > *leah* > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2005 Report Share Posted May 12, 2005 I know I can not get over that, what about sweating tori does especially under her hair and her feet. How long will you be in NY, I live north of the city. hello > > > Hi, I just happened to stumble across this group> my > name is Leah, I > am 22 and I was born with silver russel syndrome. > I've had a few > questions that no one seems able to answer. I have a > few things that > are odd about me and i'm not sure if they're related > to the SRS > because there is so little knowledge of the > disorder. I was born > without a uterus, ribs over my heart and without one > of my kidneys. > the other thing is i used to have chronic ear > infections and i have > bell's palsey. If anyone knows anything about any of > these things > please write back and well...even if you don't : ) > have a good day > > *leah* > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2005 Report Share Posted May 15, 2005 Too funny . is like a wet washcloth under her hair. Especially, she want her hair down more often now; and yes her feet sweat. We live in NJ so we are just going in to the city for the appointment. We need to make plans to get together. I think it's only a 2 hour drive to you. I work with a girl who lived about 15 minutes north of Monticello and she said that is a 2 hour drive. How far north are you of Monticello? Once 's dance recital is done (June 18) my Saturdays are free. Me and the girls can make the trip. My husband works Saturdays so most Saturdays, its me and the girls. By the way, when is your cardio visit? Isn't it coming up in June? B 5 and Kelli 2 3/4 jamie xxxx wrote: I know I can not get over that, what about sweating tori does especially under her hair and her feet. How long will you be in NY, I live north of the city. hello > > > Hi, I just happened to stumble across this group> my > name is Leah, I > am 22 and I was born with silver russel syndrome. > I've had a few > questions that no one seems able to answer. I have a > few things that > are odd about me and i'm not sure if they're related > to the SRS > because there is so little knowledge of the > disorder. I was born > without a uterus, ribs over my heart and without one > of my kidneys. > the other thing is i used to have chronic ear > infections and i have > bell's palsey. If anyone knows anything about any of > these things > please write back and well...even if you don't : ) > have a good day > > *leah* > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 I think we are only 30 min from monticello. We should make plans to meet in the summer. How far are you from the city. I would like to go to the Bronx zoo or the aquarium. hello > > > Hi, I just happened to stumble across this group> my > name is Leah, I > am 22 and I was born with silver russel syndrome. > I've had a few > questions that no one seems able to answer. I have a > few things that > are odd about me and i'm not sure if they're related > to the SRS > because there is so little knowledge of the > disorder. I was born > without a uterus, ribs over my heart and without one > of my kidneys. > the other thing is i used to have chronic ear > infections and i have > bell's palsey. If anyone knows anything about any of > these things > please write back and well...even if you don't : ) > have a good day > > *leah* > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 If you are going to the bronx zoo, let me know. We are only about 20 minutes from there and have a membership. Judith, Steve, (RSS) and (non RSS) 5 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 Hi We are only 45 minutes from the city. That sounds great. I checked out your photos - how beautiful!!! B --- jamie xxxx wrote: > I think we are only 30 min from monticello. We > should make plans to meet in the summer. How far are > you from the city. I would like to go to the Bronx > zoo or the aquarium. > > > > hello > > > > > > Hi, I just happened to stumble across this group> > my > > name is Leah, I > > am 22 and I was born with silver russel syndrome. > > I've had a few > > questions that no one seems able to answer. I have > a > > few things that > > are odd about me and i'm not sure if they're > related > > to the SRS > > because there is so little knowledge of the > > disorder. I was born > > without a uterus, ribs over my heart and without > one > > of my kidneys. > > the other thing is i used to have chronic ear > > infections and i have > > bell's palsey. If anyone knows anything about any > of > > these things > > please write back and well...even if you don't : ) > > have a good day > > > > *leah* > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 well let me ck the calender and try to plan a date. jamie hello > > > > > > Hi, I just happened to stumble across this group> > my > > name is Leah, I > > am 22 and I was born with silver russel syndrome. > > I've had a few > > questions that no one seems able to answer. I have > a > > few things that > > are odd about me and i'm not sure if they're > related > > to the SRS > > because there is so little knowledge of the > > disorder. I was born > > without a uterus, ribs over my heart and without > one > > of my kidneys. > > the other thing is i used to have chronic ear > > infections and i have > > bell's palsey. If anyone knows anything about any > of > > these things > > please write back and well...even if you don't : ) > > have a good day > > > > *leah* > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 ok great we all should plan the trip to the zoo that would be good. Re: hello - If you are going to the Bronx zoo, let me know. We are only about 20 minutes from there and have a membership. Judith, Steve, (RSS) and (non RSS) 5 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 hey i want to go to the zoo too!!! jodie c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 well lets pick a date and see who all can go maybe towards the end of june or in august after the convention. Re: hello - hey i want to go to the zoo too!!! jodie c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 after convention would probably work better for me, i have 2 big fundraisers coming up in june!!! the breakfast and the dinner, so i will be going nuts doing everything for both of them!! LOL!!! jodie c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 sounds good for me too life seems to be so busy lately jamie Re: hello - after convention would probably work better for me, i have 2 big fundraisers coming up in june!!! the breakfast and the dinner, so i will be going nuts doing everything for both of them!! LOL!!! jodie c Quote Link to comment Share on other sites More sharing options...
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