Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 My son was the same weight at his age, even though he was ng-tube fed for almost his first 2 years and got a lot of calories. I don't remember your history - have you been able to try growth hormone since the FDA approved it for catch-up growth in IUGR children last year? We just started it and a g-tube with fundo in January, so it could be various factors, but Tim gained 11 pounds since January. He's still tiny - was 21 pounds just before his 7th birthsday and now is 32 pounds (and 3 inches taller). Things are definitely looking up. Inga At 06:33 PM 9/10/2002 -0700, you wrote: > > Hi everyone- > My name is Susie. I have a 2 1/2 > yr. old son, 12 lbs, with RSS, . I do not own a > computer so I am unable to go on-line very often. > Today, I have 356 E-mails. I don't know how I will > get through them all.First off, I would like to thank > all of you from the bottom of my heart, for your > support and for the very kind gifts some of you sent > my family. Secondly, I'd like to apoligize for not > thanking some of you individually and in a more timely > fashion. I tried to organize everyone on a list to > send thank-yous to later, but unfortunately, it has > gotten lost in the shuffle. My son and daughter and I > really enjoyed every gift. > Now let me fill you all in on > 's progress, or should I say, LACK OF IT! > is still fluctuating between 11 1/2 and 12 > lbs, as he has this last whole year. He did have a > big setback in Feb. where he got down to 9+lbs. But > it seems after an illness he will regain the weight > lost steadily and quickly, but will then come to a > complete stop when he reaches his prior to illness > weight. Does anyone else have this happen? Phoenix > reluctantly admitted to their hospital and, I > feel, hurried us away without accomplishing a thing. > So here we sit again with a malnourished baby and > nobody in Arizona willing to help us. Now, I'm > looking for other options. I've been trying to get > 's medical records from his last stays at > Sunrise and Phoenix Children's Hospitals for about a > month now. I don't understand what takes so long. I > thought that's what fax machines were for. Anyways, > I plan on making some big changes in Willy's care. > (New specialists, new primary care dr., even maybe a > new residence.) Just need those last two sets of > records. > Again, thanks to everyone who made our hospital > stay more pleasant. > Sincerely, Susie > > __________________________________________________ > Yahoo! - We Remember > 9-11: A tribute to the more than 3,000 lives lost > http://dir.remember.yahoo.com/tributehttp://dir.remember.yahoo.com/tribute > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 My son was the same weight at his age, even though he was ng-tube fed for almost his first 2 years and got a lot of calories. I don't remember your history - have you been able to try growth hormone since the FDA approved it for catch-up growth in IUGR children last year? We just started it and a g-tube with fundo in January, so it could be various factors, but Tim gained 11 pounds since January. He's still tiny - was 21 pounds just before his 7th birthsday and now is 32 pounds (and 3 inches taller). Things are definitely looking up. Inga At 06:33 PM 9/10/2002 -0700, you wrote: > > Hi everyone- > My name is Susie. I have a 2 1/2 > yr. old son, 12 lbs, with RSS, . I do not own a > computer so I am unable to go on-line very often. > Today, I have 356 E-mails. I don't know how I will > get through them all.First off, I would like to thank > all of you from the bottom of my heart, for your > support and for the very kind gifts some of you sent > my family. Secondly, I'd like to apoligize for not > thanking some of you individually and in a more timely > fashion. I tried to organize everyone on a list to > send thank-yous to later, but unfortunately, it has > gotten lost in the shuffle. My son and daughter and I > really enjoyed every gift. > Now let me fill you all in on > 's progress, or should I say, LACK OF IT! > is still fluctuating between 11 1/2 and 12 > lbs, as he has this last whole year. He did have a > big setback in Feb. where he got down to 9+lbs. But > it seems after an illness he will regain the weight > lost steadily and quickly, but will then come to a > complete stop when he reaches his prior to illness > weight. Does anyone else have this happen? Phoenix > reluctantly admitted to their hospital and, I > feel, hurried us away without accomplishing a thing. > So here we sit again with a malnourished baby and > nobody in Arizona willing to help us. Now, I'm > looking for other options. I've been trying to get > 's medical records from his last stays at > Sunrise and Phoenix Children's Hospitals for about a > month now. I don't understand what takes so long. I > thought that's what fax machines were for. Anyways, > I plan on making some big changes in Willy's care. > (New specialists, new primary care dr., even maybe a > new residence.) Just need those last two sets of > records. > Again, thanks to everyone who made our hospital > stay more pleasant. > Sincerely, Susie > > __________________________________________________ > Yahoo! - We Remember > 9-11: A tribute to the more than 3,000 lives lost > http://dir.remember.yahoo.com/tributehttp://dir.remember.yahoo.com/tribute > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 My son was the same weight at his age, even though he was ng-tube fed for almost his first 2 years and got a lot of calories. I don't remember your history - have you been able to try growth hormone since the FDA approved it for catch-up growth in IUGR children last year? We just started it and a g-tube with fundo in January, so it could be various factors, but Tim gained 11 pounds since January. He's still tiny - was 21 pounds just before his 7th birthsday and now is 32 pounds (and 3 inches taller). Things are definitely looking up. Inga At 06:33 PM 9/10/2002 -0700, you wrote: > > Hi everyone- > My name is Susie. I have a 2 1/2 > yr. old son, 12 lbs, with RSS, . I do not own a > computer so I am unable to go on-line very often. > Today, I have 356 E-mails. I don't know how I will > get through them all.First off, I would like to thank > all of you from the bottom of my heart, for your > support and for the very kind gifts some of you sent > my family. Secondly, I'd like to apoligize for not > thanking some of you individually and in a more timely > fashion. I tried to organize everyone on a list to > send thank-yous to later, but unfortunately, it has > gotten lost in the shuffle. My son and daughter and I > really enjoyed every gift. > Now let me fill you all in on > 's progress, or should I say, LACK OF IT! > is still fluctuating between 11 1/2 and 12 > lbs, as he has this last whole year. He did have a > big setback in Feb. where he got down to 9+lbs. But > it seems after an illness he will regain the weight > lost steadily and quickly, but will then come to a > complete stop when he reaches his prior to illness > weight. Does anyone else have this happen? Phoenix > reluctantly admitted to their hospital and, I > feel, hurried us away without accomplishing a thing. > So here we sit again with a malnourished baby and > nobody in Arizona willing to help us. Now, I'm > looking for other options. I've been trying to get > 's medical records from his last stays at > Sunrise and Phoenix Children's Hospitals for about a > month now. I don't understand what takes so long. I > thought that's what fax machines were for. Anyways, > I plan on making some big changes in Willy's care. > (New specialists, new primary care dr., even maybe a > new residence.) Just need those last two sets of > records. > Again, thanks to everyone who made our hospital > stay more pleasant. > Sincerely, Susie > > __________________________________________________ > Yahoo! - We Remember > 9-11: A tribute to the more than 3,000 lives lost > http://dir.remember.yahoo.com/tributehttp://dir.remember.yahoo.com/tribute > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2002 Report Share Posted September 16, 2002 Hi Suzie, Glad to hear the update on . I only wish that the news was a little better. Good luck with your decision to move. It sounds like that may be a good choice. As for the computer. I may be able to help with that. Will you email me directly. Mom to - 4 /12, RSS Quote Link to comment Share on other sites More sharing options...
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