Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Hi jodi.....I'm so sorry you are having such a bad time. Yes Imogen is at the severe end of the spectrum.....she has the same cute little features as andrew and the same shaped head ...someone mentioned the word light bulb! which i hadn't thought of before...but it is apt! I know...I have the odd chat with Pat....I think is on a 'diet' now! That's how well he is doing! I can't ever imagine Immi ever having to diet....a breath of wind would blow her away....but she's full of energy for all that. Somehow these kids just survive! I'm sure I've spoken to you before about Immi#s vomiting when she was little....it does make you despair doesn't it! You feel so sorry for them....cos it distresses them But it will improve and dissappear within a year or two. We could never go anywhere with Immi without taking a huge bag of stuff.....even just to visit a friends house...we would have, milk feed, stand, bottle, tiube, syringes, muslin squarea to help mop up the vomit! change of clothes...2 or 3 changes!! It's odd for me to remember all that now cos it seems so far away and we lived through it and now she's off the tube...eating and never vomits. I know what you mean about wishing things were different........but as gets older and things get easier you will find that you don't think those'if only' thoughts any more. I told you how I didn't love Immi in her first few weeks,,,,,and I found the fact that she was different very hard to come to terms with at first...I just thought it was the end of the world....I felt everywhere we went with her we were stared at because of the tube business...and I thought we would always be stared at and the thought deppressed me. But we don't even notice it anynore. If she does get a comment it's ussually a pleasant one because she does look cute. And I think a lot of people just think she's much younger than she is.We don't correct them unless they ask...and when they ask I always begin by saying'prepare yourself for a shock' then 'tell them Imogen' 'I'm thix' imogen then lisps proudly...!! I'm sure is going to be just fine...and as an adult he won't even look like he has a 'syndrome' Have you looked at the RSS adults who have pics on the site? They just look ordinary....a bit on the small side granted. But will be a lovely looking blonder haired (diminutive!) Adonis! And there's nothing wrong with short men! My first love was 5'5 and I worshipped the ground he walked on. I always fancied J Fox 5'4...and of course little Dudley ...think he was just 5'2.....didn't do him any harm with the women did it! Oh and I married a 5'6 guy! It would be so nice if we could get some adult RSS guys on the site talking about how life is for them. It's helped me so much to talk to the RSS women. But us girls like to chat don't we....the RSS guys are all out there enjoying themselves! Yep, Immi had awful trouble with constipation...I know exactly what you mean....she would be in the middle of a poo and it would just get stuck...and she would scream in pain and cry...and I would cry...and I'd phone my husband at work and I'd say it's like she's in childbirth! It was dreadful. What I would do to help her is (this is a bit icky but it helps) when the poo is tuck get a generous wadge of vaseline on your fingers andput it on her bottom where the poo is coming out and it helps. (told you it was icky...!) Then we'd dose her up on a harmless constipation cure called Lactolose...don't know if you have that in the states.....but there's nothing harmful in it...it's a sugary substance.....pregnant women can have it.Then we would try and get her to eat (ha!) fibre rich foods(baked beans, weetabix) but of course A is tube fed. Does he eat anything at all yet? So yeah, Immi has had all these problems.....but it's ages since she's had constipation problems...so maybe this is another of those RSS things that disappear with time..... Take care Jodi...chin up Eileenxx Jodi Rollison rssboy2002@...> wrote: Hi Eileen, I was just catching up on the posts here. I have read a couple of different times about how Imogen is a severe RSS. You went over some of the characteristics she has, things that make her a little more severe. sounds so much like her. has been labeled as being on the severe side of RSS. He has a lot of the classic characteristics. Dr. Harbison says that he is as classic a Silver baby that you'll ever see. She says he is one of the most calorie defficient ones, likes . Pat and I have talked a good deal back and forth on this very topic. She is very encouraging to me because had a lot of the same troubles that has, and now is " heavy " for his height, and has come so far. Well, I just had to attend to . He threw up again. First time today though, so that's a plus. He gets weighed tomorrow nad I am anticipating a good gain for him, since we have upped him on his pump a little. I will be dissapointed if he doesn't have a good gain. Not in him of course, but in this whole process. Sometimes I get really down about all of this, and I wonder what he would be like without RSS. I mean, don't get me worng. I wouldn't trade him for ANYTHING. I just wonder what it would be like if he was without the RSS. Is that wrong? I feel guilty about that sometimes. I love him dearly, but I wish he didn't have to deal with being crammed and stuffed full all the time and then throwing up. Okay, I guess I am gettting a little carried away, but it is just one of those days. Does Imogen have problems with constipation? just can't seem to poop. Since we went to New York and he saw Dr. Harbison, she put the tube in his belly (he used to have a j tube) and ever since then he doesn't poop well. It scares me and I have given him some Milk of Magnesia to help him poop, but it seems to hurt him. He gets histerical and cries huge tears until he can release the poop out. So, I am not liking that. He had me in tears last night about 11:30 doing this. I can just telll he is in pain. I was just wondering if Immi has these problems, too. Well, Eileen. Take care and I hope to hear from you soon. Jodi R. 's momma IUGR/RSS --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Hi Eileen, Thank you for your support. Isn't it strange how similar things are with us? Anyway, No, doesn't eat anything by mouth. Shoot, he has given up his pacifier since having the tube placed into his stomach because it would gag him. He was and is so full that to take his binky in his mouth would literally make him gag. So, he got rid of it real quick! Poor little guy. He can't even enjoy his binky! I am hoping that Dr. Harbison will call me back today. She is supposed to, and I hope she will. I have heard several suggestions on here and from Pat via email. Some have brought up changing his formula, giving him more water (which I never have and didn't realize I should have), and prune juice, and Dayna suggested flaxseed oil amoung other things. So, I don't know what to do. I hate that he is all backed up. He didn't poop at all yesterday, and none today, so far. I guess I'll have to be giving him the Milk of Magnesia today. It's just when he gets that, his poop is like water. I hate him losing that. Bye bye electrolytes! You know, I do wonder what would be like if he didn't have RSS, but I love him dearly. I think the reason why I wonder that sometimes is because I get so tired of seeing him go through all this crap and hospitals and Dr.s and nurses, etc., that I lobg for him to know what life is without all that. I mean, my heart hurts for him. I know, I know, people are always saying, " but he doesn't know anything different.....he thinks this is normal. " Is that supposed to be comforting to me. No, HE doesn't know any different, but I do, and I know that life could be so much better for him. I mean, I love him that much. Do you know waht I mean? I guess that's part of every parent wants the best for their child. I don't know. I guess I just want better for him. And, it's not a selffish thing. Actually, it's the opposite. I just want him to have no worries, no problems, no pain, no more overstuffing. Sometimes I feel that overstuffing is cruel. It's like me eating too much all the time. I hat that feeling of overstuffed. So, I struggle with this, and I hope I don't come across as a whiner or a selffish person, because that I am not. Okay, I may whine a little ), but I am not selffish. Well, I have rattled on long enough and it sounds as though is getting ready to spit up, so I better go. Talk to you soon, Jodi > Hi Eileen, > I was just catching up on the posts here. I have read a couple of > different times about how Imogen is a severe RSS. You went over some > of the characteristics she has, things that make her a little more > severe. sounds so much like her. has been labeled as > being on the severe side of RSS. He has a lot of the classic > characteristics. Dr. Harbison says that he is as classic a > Silver baby that you'll ever see. She says he is one of the most > calorie defficient ones, likes . Pat and I have talked a good > deal back and forth on this very topic. She is very encouraging to > me because had a lot of the same troubles that has, > and now is " heavy " for his height, and has come so far. > > Well, I just had to attend to . He threw up again. First time > today though, so that's a plus. He gets weighed tomorrow nad I am > anticipating a good gain for him, since we have upped him on his pump > a little. I will be dissapointed if he doesn't have a good gain. > Not in him of course, but in this whole process. Sometimes I get > really down about all of this, and I wonder what he would be like > without RSS. I mean, don't get me worng. I wouldn't trade him for > ANYTHING. I just wonder what it would be like if he was > without the RSS. Is that wrong? I feel guilty about that > sometimes. I love him dearly, but I wish he didn't have to deal with > being crammed and stuffed full all the time and then throwing up. > Okay, I guess I am gettting a little carried away, but it is just one > of those days. > > Does Imogen have problems with constipation? just can't seem > to poop. Since we went to New York and he saw Dr. Harbison, she put > the tube in his belly (he used to have a j tube) and ever since then > he doesn't poop well. It scares me and I have given him some Milk of > Magnesia to help him poop, but it seems to hurt him. He gets > histerical and cries huge tears until he can release the poop out. > So, I am not liking that. He had me in tears last night about 11:30 > doing this. I can just telll he is in pain. I was just wondering if > Immi has these problems, too. > > Well, Eileen. Take care and I hope to hear from you soon. > > Jodi R. > 's momma > IUGR/RSS > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Hi Jodi, yes...s early years sound very similar to Imogens.....I hated all the stuff I had to do to her...all the stuff docs had to do to her...I even hated my husband for a while cos he was the cause of her being there and suffering in the first place! But she's now had over 3 years where she has been able and allowed to live a normal life and to just be 'Little Imogen' at school who everybody loves. I was worried too about possible teasing...so far there has been zero.She is just accepted and she makes them laugh with her funny ways and her renditions of the latest pop song. You can imagine this little angelic toddler sized child singing 'dirty' by Aguillara at the top of her voice...and perfectly I might add! All my other children had dummies.....but Imogen wouldn't take one.....the nurses in special care wanted her to cos they thought it might improve her sucking and she might take a bottle(some hopes..) but we would bung it in and immediately it would come flying out across the room! But she took to the muslin squares that we were always tucking in to the tops of her stretch suits after her tube feed to attempt to catch some sick! She still sucks on her 'muzzy' at night.....says she'll give it up when she's 7....yeah right. Honestly Jodi.....once you get over these early years you will find things are so much easier and you'll find he'll be such a little character and you'll enjoy him as he is ...and he won't remember all the horrid hospital stuff.....and if you opt for gh...I'm sure he'll get used to it. I've heard older children even inject themselves. As for the feeding......why not ask your nutritionist if you can reduce his feed to a more comfortable level? We did that...with advise we watered it down and that helped a bit. I promise you he will start eating tho' and these days will be behind you. Imogen ate zilch at s age.Today she had half a hamburger and a decent portion of chips for tea. If someone had said she would be eating like that at 6 when she was 2 I wouldn't have believed them! Don't know why you are talking about being selfish you nana...you just love the bones of your child that's all. Am I right that you have never been to a convention?? Oh...Jodi.....you must go!!! I will never forget the first time...Immi was 14months......I had felt so alone in the world.....cos i was going through all the stuff you are now and no-one else could understand it.......and I walked into this big room full of all kinds of people...there were achons,turners, Sotos.....but way over in the corner I saw a guy lift his baby up into the air....and I could see he was just the same as Immi....same shaped head and little body and everything........ended up talking to the parents of course and got aquainted with some others....it was just wonderful. I felt so happy driving home...I couldn't stop talking! It'll be fab when you go. Thanks for your lovely comments about Imogen...I will pass them on...tho' she's big headed enough already...the little minx! I do hope you find something that will help s constipation soon. As I said Lactulose really helped...and we just syringed it into her tube....then rinsed the tube cos it's a bit gloopy. Take care....sorry about my usual wafflings! Eileen x Jodi Rollison rssboy2002@...> wrote: Hi Eileen, Thank you for your support. Isn't it strange how similar things are with us? Anyway, No, doesn't eat anything by mouth. Shoot, he has given up his pacifier since having the tube placed into his stomach because it would gag him. He was and is so full that to take his binky in his mouth would literally make him gag. So, he got rid of it real quick! Poor little guy. He can't even enjoy his binky! I am hoping that Dr. Harbison will call me back today. She is supposed to, and I hope she will. I have heard several suggestions on here and from Pat via email. Some have brought up changing his formula, giving him more water (which I never have and didn't realize I should have), and prune juice, and Dayna suggested flaxseed oil amoung other things. So, I don't know what to do. I hate that he is all backed up. He didn't poop at all yesterday, and none today, so far. I guess I'll have to be giving him the Milk of Magnesia today. It's just when he gets that, his poop is like water. I hate him losing that. Bye bye electrolytes! You know, I do wonder what would be like if he didn't have RSS, but I love him dearly. I think the reason why I wonder that sometimes is because I get so tired of seeing him go through all this crap and hospitals and Dr.s and nurses, etc., that I lobg for him to know what life is without all that. I mean, my heart hurts for him. I know, I know, people are always saying, " but he doesn't know anything different.....he thinks this is normal. " Is that supposed to be comforting to me. No, HE doesn't know any different, but I do, and I know that life could be so much better for him. I mean, I love him that much. Do you know waht I mean? I guess that's part of every parent wants the best for their child. I don't know. I guess I just want better for him. And, it's not a selffish thing. Actually, it's the opposite. I just want him to have no worries, no problems, no pain, no more overstuffing. Sometimes I feel that overstuffing is cruel. It's like me eating too much all the time. I hat that feeling of overstuffed. So, I struggle with this, and I hope I don't come across as a whiner or a selffish person, because that I am not. Okay, I may whine a little ), but I am not selffish. Well, I have rattled on long enough and it sounds as though is getting ready to spit up, so I better go. Talk to you soon, Jodi > Hi Eileen, > I was just catching up on the posts here. I have read a couple of > different times about how Imogen is a severe RSS. You went over some > of the characteristics she has, things that make her a little more > severe. sounds so much like her. has been labeled as > being on the severe side of RSS. He has a lot of the classic > characteristics. Dr. Harbison says that he is as classic a > Silver baby that you'll ever see. She says he is one of the most > calorie defficient ones, likes . Pat and I have talked a good > deal back and forth on this very topic. She is very encouraging to > me because had a lot of the same troubles that has, > and now is " heavy " for his height, and has come so far. > > Well, I just had to attend to . He threw up again. First time > today though, so that's a plus. He gets weighed tomorrow nad I am > anticipating a good gain for him, since we have upped him on his pump > a little. I will be dissapointed if he doesn't have a good gain. > Not in him of course, but in this whole process. Sometimes I get > really down about all of this, and I wonder what he would be like > without RSS. I mean, don't get me worng. I wouldn't trade him for > ANYTHING. I just wonder what it would be like if he was > without the RSS. Is that wrong? I feel guilty about that > sometimes. I love him dearly, but I wish he didn't have to deal with > being crammed and stuffed full all the time and then throwing up. > Okay, I guess I am gettting a little carried away, but it is just one > of those days. > > Does Imogen have problems with constipation? just can't seem > to poop. Since we went to New York and he saw Dr. Harbison, she put > the tube in his belly (he used to have a j tube) and ever since then > he doesn't poop well. It scares me and I have given him some Milk of > Magnesia to help him poop, but it seems to hurt him. He gets > histerical and cries huge tears until he can release the poop out. > So, I am not liking that. He had me in tears last night about 11:30 > doing this. I can just telll he is in pain. I was just wondering if > Immi has these problems, too. > > Well, Eileen. Take care and I hope to hear from you soon. > > Jodi R. > 's momma > IUGR/RSS > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 Eileen, Hi, and thank you for your encouraging words. You are not the first person that has told me that the early years are the hardest. You know, it is not all the stuff I have to do for him or anything like that. It is just like you said, I love him dearly and want him to be happy. I think the biggest thing is the throwing up and stuffing him. I wish he didn't need twice as many calories as the " normal " 19 month old. I long for the days that he eats by himself and that ube is history. I do enjoy him now, so much. But, I can't help thinking, man, could be up walking and running and playing with his big brother. But, I know that day will come. I am just so tickled that he is gaining weight so well now, and I should shut up and just be happy about that. If it wasn't for going to NY and seeing Dr. H, would still be fed on the j tube and gaining one to three ounces a week. But, he has come so far since then. He got head control suddenly, sitting up, and now he is on his feet cruising the couch! ) So, don't get me wrong. I enjoy him and all he has accomplished, but I just get down at times when he throws up and screams " momma " . It makes me have mixed feelings. Good, because he knows who is there for him, and bad, becasue I feel like he wants me to fix him. But, I am his mommy and I guess I feel in a way like I should do more. I do pray that I will be able to go to the convention in Chicago this year. I am going to try my hardest. I would love to meet others and be around people that deal with the same things I deal with. As far as the feedings go, I cannot reduce 's feeds. He was on the same formula before we went to Ny but at a reduced caloric strength. And, he wasn't getting as much. Therefore, he didn't gain any weight. Basically, this is what needs to gain weight. We have tried to ease up, but to no avail. Well, as far as constipation. has pooped twice today, so I think he is doing better. We are giving him water and prune juice through his tube now, thanks to Pat. ) I am hoping that will help anyway. Well I better go for now. And by the way, you don't waffle at all. I enjoy reading your posts! Take care, Jodi R. > > Hi Eileen, > > I was just catching up on the posts here. I have read a couple of > > different times about how Imogen is a severe RSS. You went over > some > > of the characteristics she has, things that make her a little more > > severe. sounds so much like her. has been labeled > as > > being on the severe side of RSS. He has a lot of the classic > > characteristics. Dr. Harbison says that he is as classic a > > Silver baby that you'll ever see. She says he is one of the most > > calorie defficient ones, likes . Pat and I have talked a > good > > deal back and forth on this very topic. She is very encouraging to > > me because had a lot of the same troubles that has, > > and now is " heavy " for his height, and has come so far. > > > > Well, I just had to attend to . He threw up again. First > time > > today though, so that's a plus. He gets weighed tomorrow nad I am > > anticipating a good gain for him, since we have upped him on his > pump > > a little. I will be dissapointed if he doesn't have a good gain. > > Not in him of course, but in this whole process. Sometimes I get > > really down about all of this, and I wonder what he would be like > > without RSS. I mean, don't get me worng. I wouldn't trade him for > > ANYTHING. I just wonder what it would be like if he was > > without the RSS. Is that wrong? I feel guilty about that > > sometimes. I love him dearly, but I wish he didn't have to deal > with > > being crammed and stuffed full all the time and then throwing up. > > Okay, I guess I am gettting a little carried away, but it is just > one > > of those days. > > > > Does Imogen have problems with constipation? just can't > seem > > to poop. Since we went to New York and he saw Dr. Harbison, she > put > > the tube in his belly (he used to have a j tube) and ever since > then > > he doesn't poop well. It scares me and I have given him some Milk > of > > Magnesia to help him poop, but it seems to hurt him. He gets > > histerical and cries huge tears until he can release the poop out. > > So, I am not liking that. He had me in tears last night about > 11:30 > > doing this. I can just telll he is in pain. I was just wondering > if > > Immi has these problems, too. > > > > Well, Eileen. Take care and I hope to hear from you soon. > > > > Jodi R. > > 's momma > > IUGR/RSS > > > > > > > > --------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 hello jodi......first of all I'm so glad has pooped!!! Good old pat eh??!! Honey...I'm not the first to tell you that the first years are the hardest cos it's so true!! It's easy for me to say that I know cos I'm in the comfort zone now....Immi is asleep upstairs...tubeless etc...and all I have to contend with is my husbands snores in the background as I type.....he should go to bed but....it' s new years blahdiblah....but I'm still sober enough to type...just.... We went up to London today...took them to Madame Tuasauds and the planatarium...i did notice a few stares...but i looked at them as if to say' yes, she is beautiful isn't she>>'! She was ok looking at the waxworks...but the planatarium was a trila for her cos it's loud. She hates loud! Dunno if this is an Imogenism or other RSS kids have this....she has always hated loud noises....if we go to the cinema we have to wait with her in the foyer til the ads are over...cos they are the loudest! Jodi, I know you love and enjoy andrew as he is...sorry if I implied otherwise.Please trust me in that you will get through this phase......I did....we just have a perfectly ordinary mini! 6 year old daughter now. And she is perfect...she's a perfect RSS child!! Jodi... will be walking soon....I can remember so clearly when Immi stood on her on for the first time.....she was about 2 and a half....all my other kids applauded her and said well done and from then it was no stopping her! She loves to walk and run now but she is still little enough to use that cute arms outstretch manouvre to make us sweep her up into our arms for a carry when she's tired! As for the playing with older siblings......it's turned out better than I could have ever imagined...she has 2 big sisters aged 9 and 13 and a big brother aged 9 ...and they include her in everything......all the imaginary games that they play...Immi has a part.....and they are now initiating her in the art of the playstation game......cos I heard this coming from one of the kids bedrooms the other day owen(my 9yr old son) : that's it Imogen...go on...that's it....well done imogen! YOU KILLED SOMEONE!!!' My poor innocent baby...her first murder victim! I really hope you can get to the convention. Trouble is us Brits have trouble grasping how big the us is...our whole country could fit into california (I think that's right) so the distances must be vast for you. Where are you in the us?? It was bad enough for us travelling from london to birmingham....which must be a stones throw to you! But try and make it ...it'll make all the difference..... It will be ok in the end......hold on to that thought! Happy New Year Eileen x Jodi Rollison rssboy2002@...> wrote: Eileen, Hi, and thank you for your encouraging words. You are not the first person that has told me that the early years are the hardest. You know, it is not all the stuff I have to do for him or anything like that. It is just like you said, I love him dearly and want him to be happy. I think the biggest thing is the throwing up and stuffing him. I wish he didn't need twice as many calories as the " normal " 19 month old. I long for the days that he eats by himself and that ube is history. I do enjoy him now, so much. But, I can't help thinking, man, could be up walking and running and playing with his big brother. But, I know that day will come. I am just so tickled that he is gaining weight so well now, and I should shut up and just be happy about that. If it wasn't for going to NY and seeing Dr. H, would still be fed on the j tube and gaining one to three ounces a week. But, he has come so far since then. He got head control suddenly, sitting up, and now he is on his feet cruising the couch! ) So, don't get me wrong. I enjoy him and all he has accomplished, but I just get down at times when he throws up and screams " momma " . It makes me have mixed feelings. Good, because he knows who is there for him, and bad, becasue I feel like he wants me to fix him. But, I am his mommy and I guess I feel in a way like I should do more. I do pray that I will be able to go to the convention in Chicago this year. I am going to try my hardest. I would love to meet others and be around people that deal with the same things I deal with. As far as the feedings go, I cannot reduce 's feeds. He was on the same formula before we went to Ny but at a reduced caloric strength. And, he wasn't getting as much. Therefore, he didn't gain any weight. Basically, this is what needs to gain weight. We have tried to ease up, but to no avail. Well, as far as constipation. has pooped twice today, so I think he is doing better. We are giving him water and prune juice through his tube now, thanks to Pat. ) I am hoping that will help anyway. Well I better go for now. And by the way, you don't waffle at all. I enjoy reading your posts! Take care, Jodi R. > > Hi Eileen, > > I was just catching up on the posts here. I have read a couple of > > different times about how Imogen is a severe RSS. You went over > some > > of the characteristics she has, things that make her a little more > > severe. sounds so much like her. has been labeled > as > > being on the severe side of RSS. He has a lot of the classic > > characteristics. Dr. Harbison says that he is as classic a > > Silver baby that you'll ever see. She says he is one of the most > > calorie defficient ones, likes . Pat and I have talked a > good > > deal back and forth on this very topic. She is very encouraging to > > me because had a lot of the same troubles that has, > > and now is " heavy " for his height, and has come so far. > > > > Well, I just had to attend to . He threw up again. First > time > > today though, so that's a plus. He gets weighed tomorrow nad I am > > anticipating a good gain for him, since we have upped him on his > pump > > a little. I will be dissapointed if he doesn't have a good gain. > > Not in him of course, but in this whole process. Sometimes I get > > really down about all of this, and I wonder what he would be like > > without RSS. I mean, don't get me worng. I wouldn't trade him for > > ANYTHING. I just wonder what it would be like if he was > > without the RSS. Is that wrong? I feel guilty about that > > sometimes. I love him dearly, but I wish he didn't have to deal > with > > being crammed and stuffed full all the time and then throwing up. > > Okay, I guess I am gettting a little carried away, but it is just > one > > of those days. > > > > Does Imogen have problems with constipation? just can't > seem > > to poop. Since we went to New York and he saw Dr. Harbison, she > put > > the tube in his belly (he used to have a j tube) and ever since > then > > he doesn't poop well. It scares me and I have given him some Milk > of > > Magnesia to help him poop, but it seems to hurt him. He gets > > histerical and cries huge tears until he can release the poop out. > > So, I am not liking that. He had me in tears last night about > 11:30 > > doing this. I can just telll he is in pain. I was just wondering > if > > Immi has these problems, too. > > > > Well, Eileen. Take care and I hope to hear from you soon. > > > > Jodi R. > > 's momma > > IUGR/RSS > > > > > > > > --------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Eileen, As I watch right now holding on to a table standing all by himself, I can tell you, that I know we will get through these rough years. Simply because shows us so much strength and determination it is unbelievable. He has ever since being in the hospital right after birth. He has always had that look in his eyes and fire to get better. I just anticiapte it and I have NO patience! ) I would just love for him to eat and everything on his own, but one day he'll get there. I guess I am just tired emotionally. ) But, I really hold it together real nice. Hee, hee. It sounds like Imogen really is doing so well. Getting along so well with her siblings, too. and fight just like brothers do. I caught myself saying the other day, " I can't believe you guys fight like this! " ) So, in some ways, things are very normal here. I had to laugh at you saying about Imogen playing playstation and just had her first murder victim. That was too funny. Poor little girl, she's corrupted now! ) You know, I have noticed that seems to be bothered slightly by loud noises. has the machine gun thing (that I didn not get him, mind you.....and I don't like the idea at all), and he was using it yesterday in here, and screamed and tried to cover his ear and push it away. So, I think there is a little sensitivity there with him, too. Well, better get going. Time to get in the shower and go on with the day, I suppose. My husband will be watching football all day......YEAH! What a thrill for me. ) Take care and Happy New Year, Jodi R. > > > Hi Eileen, > > > I was just catching up on the posts here. I have read a couple > of > > > different times about how Imogen is a severe RSS. You went over > > some > > > of the characteristics she has, things that make her a little > more > > > severe. sounds so much like her. has been labeled > > as > > > being on the severe side of RSS. He has a lot of the classic > > > characteristics. Dr. Harbison says that he is as classic a > > > > Silver baby that you'll ever see. She says he is one of the most > > > calorie defficient ones, likes . Pat and I have talked a > > good > > > deal back and forth on this very topic. She is very encouraging > to > > > me because had a lot of the same troubles that > has, > > > and now is " heavy " for his height, and has come so far. > > > > > > Well, I just had to attend to . He threw up again. First > > time > > > today though, so that's a plus. He gets weighed tomorrow nad I > am > > > anticipating a good gain for him, since we have upped him on his > > pump > > > a little. I will be dissapointed if he doesn't have a good > gain. > > > Not in him of course, but in this whole process. Sometimes I get > > > really down about all of this, and I wonder what he would be like > > > without RSS. I mean, don't get me worng. I wouldn't trade him > for > > > ANYTHING. I just wonder what it would be like if he was > > > without the RSS. Is that wrong? I feel guilty about that > > > sometimes. I love him dearly, but I wish he didn't have to deal > > with > > > being crammed and stuffed full all the time and then throwing > up. > > > Okay, I guess I am gettting a little carried away, but it is just > > one > > > of those days. > > > > > > Does Imogen have problems with constipation? just can't > > seem > > > to poop. Since we went to New York and he saw Dr. Harbison, she > > put > > > the tube in his belly (he used to have a j tube) and ever since > > then > > > he doesn't poop well. It scares me and I have given him some > Milk > > of > > > Magnesia to help him poop, but it seems to hurt him. He gets > > > histerical and cries huge tears until he can release the poop > out. > > > So, I am not liking that. He had me in tears last night about > > 11:30 > > > doing this. I can just telll he is in pain. I was just > wondering > > if > > > Immi has these problems, too. > > > > > > Well, Eileen. Take care and I hope to hear from you soon. > > > > > > Jodi R. > > > 's momma > > > IUGR/RSS > > > > > > > > > > > > --------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Hi Jodi........just come back from the in-laws.....Imogen was fine....playing with her much bigger cousin who is only 4!!! She came and whispered to me that they are 'in love' !! Better start saving for the wedding...she's got herself a toyboy who is twice the size of her!!! Happy new year!!! Eileen x Jodi Rollison rssboy2002@...> wrote: Eileen, As I watch right now holding on to a table standing all by himself, I can tell you, that I know we will get through these rough years. Simply because shows us so much strength and determination it is unbelievable. He has ever since being in the hospital right after birth. He has always had that look in his eyes and fire to get better. I just anticiapte it and I have NO patience! ) I would just love for him to eat and everything on his own, but one day he'll get there. I guess I am just tired emotionally. ) But, I really hold it together real nice. Hee, hee. It sounds like Imogen really is doing so well. Getting along so well with her siblings, too. and fight just like brothers do. I caught myself saying the other day, " I can't believe you guys fight like this! " ) So, in some ways, things are very normal here. I had to laugh at you saying about Imogen playing playstation and just had her first murder victim. That was too funny. Poor little girl, she's corrupted now! ) You know, I have noticed that seems to be bothered slightly by loud noises. has the machine gun thing (that I didn not get him, mind you.....and I don't like the idea at all), and he was using it yesterday in here, and screamed and tried to cover his ear and push it away. So, I think there is a little sensitivity there with him, too. Well, better get going. Time to get in the shower and go on with the day, I suppose. My husband will be watching football all day......YEAH! What a thrill for me. ) Take care and Happy New Year, Jodi R. > > > Hi Eileen, > > > I was just catching up on the posts here. I have read a couple > of > > > different times about how Imogen is a severe RSS. You went over > > some > > > of the characteristics she has, things that make her a little > more > > > severe. sounds so much like her. has been labeled > > as > > > being on the severe side of RSS. He has a lot of the classic > > > characteristics. Dr. Harbison says that he is as classic a > > > > Silver baby that you'll ever see. She says he is one of the most > > > calorie defficient ones, likes . Pat and I have talked a > > good > > > deal back and forth on this very topic. She is very encouraging > to > > > me because had a lot of the same troubles that > has, > > > and now is " heavy " for his height, and has come so far. > > > > > > Well, I just had to attend to . He threw up again. First > > time > > > today though, so that's a plus. He gets weighed tomorrow nad I > am > > > anticipating a good gain for him, since we have upped him on his > > pump > > > a little. I will be dissapointed if he doesn't have a good > gain. > > > Not in him of course, but in this whole process. Sometimes I get > > > really down about all of this, and I wonder what he would be like > > > without RSS. I mean, don't get me worng. I wouldn't trade him > for > > > ANYTHING. I just wonder what it would be like if he was > > > without the RSS. Is that wrong? I feel guilty about that > > > sometimes. I love him dearly, but I wish he didn't have to deal > > with > > > being crammed and stuffed full all the time and then throwing > up. > > > Okay, I guess I am gettting a little carried away, but it is just > > one > > > of those days. > > > > > > Does Imogen have problems with constipation? just can't > > seem > > > to poop. Since we went to New York and he saw Dr. Harbison, she > > put > > > the tube in his belly (he used to have a j tube) and ever since > > then > > > he doesn't poop well. It scares me and I have given him some > Milk > > of > > > Magnesia to help him poop, but it seems to hurt him. He gets > > > histerical and cries huge tears until he can release the poop > out. > > > So, I am not liking that. He had me in tears last night about > > 11:30 > > > doing this. I can just telll he is in pain. I was just > wondering > > if > > > Immi has these problems, too. > > > > > > Well, Eileen. Take care and I hope to hear from you soon. > > > > > > Jodi R. > > > 's momma > > > IUGR/RSS > > > > > > > > > > > > --------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Ha, ha. That is too funny. I bet you had to just laugh. I am sure that was totally cute. Go Imogen! I told you, look out for those boys. They'll scoop her up....literally! Hee,hee. Jodi R. > > > > Hi Eileen, > > > > I was just catching up on the posts here. I have read a couple > > of > > > > different times about how Imogen is a severe RSS. You went > over > > > some > > > > of the characteristics she has, things that make her a little > > more > > > > severe. sounds so much like her. has been > labeled > > > as > > > > being on the severe side of RSS. He has a lot of the classic > > > > characteristics. Dr. Harbison says that he is as classic a > > > > > > Silver baby that you'll ever see. She says he is one of the > most > > > > calorie defficient ones, likes . Pat and I have talked > a > > > good > > > > deal back and forth on this very topic. She is very > encouraging > > to > > > > me because had a lot of the same troubles that > > has, > > > > and now is " heavy " for his height, and has come so > far. > > > > > > > > Well, I just had to attend to . He threw up again. > First > > > time > > > > today though, so that's a plus. He gets weighed tomorrow nad I > > am > > > > anticipating a good gain for him, since we have upped him on > his > > > pump > > > > a little. I will be dissapointed if he doesn't have a good > > gain. > > > > Not in him of course, but in this whole process. Sometimes I > get > > > > really down about all of this, and I wonder what he would be > like > > > > without RSS. I mean, don't get me worng. I wouldn't trade him > > for > > > > ANYTHING. I just wonder what it would be like if he was > > > > without the RSS. Is that wrong? I feel guilty about that > > > > sometimes. I love him dearly, but I wish he didn't have to > deal > > > with > > > > being crammed and stuffed full all the time and then throwing > > up. > > > > Okay, I guess I am gettting a little carried away, but it is > just > > > one > > > > of those days. > > > > > > > > Does Imogen have problems with constipation? just can't > > > seem > > > > to poop. Since we went to New York and he saw Dr. Harbison, > she > > > put > > > > the tube in his belly (he used to have a j tube) and ever since > > > then > > > > he doesn't poop well. It scares me and I have given him some > > Milk > > > of > > > > Magnesia to help him poop, but it seems to hurt him. He gets > > > > histerical and cries huge tears until he can release the poop > > out. > > > > So, I am not liking that. He had me in tears last night about > > > 11:30 > > > > doing this. I can just telll he is in pain. I was just > > wondering > > > if > > > > Immi has these problems, too. > > > > > > > > Well, Eileen. Take care and I hope to hear from you soon. > > > > > > > > Jodi R. > > > > 's momma > > > > IUGR/RSS > > > > > > > > > > > > > > > > --------------------------------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Hi Jodi, yep...she's a little cutie minx alright...........and she's not backwards in coming forwards....the boys better lookout! eileen x Jodi Rollison rssboy2002@...> wrote: Ha, ha. That is too funny. I bet you had to just laugh. I am sure that was totally cute. Go Imogen! I told you, look out for those boys. They'll scoop her up....literally! Hee,hee. Jodi R. > > > > Hi Eileen, > > > > I was just catching up on the posts here. I have read a couple > > of > > > > different times about how Imogen is a severe RSS. You went > over > > > some > > > > of the characteristics she has, things that make her a little > > more > > > > severe. sounds so much like her. has been > labeled > > > as > > > > being on the severe side of RSS. He has a lot of the classic > > > > characteristics. Dr. Harbison says that he is as classic a > > > > > > Silver baby that you'll ever see. She says he is one of the > most > > > > calorie defficient ones, likes . Pat and I have talked > a > > > good > > > > deal back and forth on this very topic. She is very > encouraging > > to > > > > me because had a lot of the same troubles that > > has, > > > > and now is " heavy " for his height, and has come so > far. > > > > > > > > Well, I just had to attend to . He threw up again. > First > > > time > > > > today though, so that's a plus. He gets weighed tomorrow nad I > > am > > > > anticipating a good gain for him, since we have upped him on > his > > > pump > > > > a little. I will be dissapointed if he doesn't have a good > > gain. > > > > Not in him of course, but in this whole process. Sometimes I > get > > > > really down about all of this, and I wonder what he would be > like > > > > without RSS. I mean, don't get me worng. I wouldn't trade him > > for > > > > ANYTHING. I just wonder what it would be like if he was > > > > without the RSS. Is that wrong? I feel guilty about that > > > > sometimes. I love him dearly, but I wish he didn't have to > deal > > > with > > > > being crammed and stuffed full all the time and then throwing > > up. > > > > Okay, I guess I am gettting a little carried away, but it is > just > > > one > > > > of those days. > > > > > > > > Does Imogen have problems with constipation? just can't > > > seem > > > > to poop. Since we went to New York and he saw Dr. Harbison, > she > > > put > > > > the tube in his belly (he used to have a j tube) and ever since > > > then > > > > he doesn't poop well. It scares me and I have given him some > > Milk > > > of > > > > Magnesia to help him poop, but it seems to hurt him. He gets > > > > histerical and cries huge tears until he can release the poop > > out. > > > > So, I am not liking that. He had me in tears last night about > > > 11:30 > > > > doing this. I can just telll he is in pain. I was just > > wondering > > > if > > > > Immi has these problems, too. > > > > > > > > Well, Eileen. Take care and I hope to hear from you soon. > > > > > > > > Jodi R. > > > > 's momma > > > > IUGR/RSS > > > > > > > > > > > > > > > > --------------------------------- > > > > Quote Link to comment Share on other sites More sharing options...
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