Jump to content
RemedySpot.com

Re: Chat-Eileen

Rate this topic


Guest guest

Recommended Posts

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

---------------------------------

Link to comment
Share on other sites

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 :o), 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

>

>

>

> ---------------------------------

>

Link to comment
Share on other sites

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 :o), 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

>

>

>

> ---------------------------------

>

Link to comment
Share on other sites

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! :o) 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. :o) 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

> >

> >

> >

> > ---------------------------------

> >

Link to comment
Share on other sites

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! :o) 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. :o) 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

> >

> >

> >

> > ---------------------------------

> >

Link to comment
Share on other sites

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! :o) 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. :o) 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! " :o) 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! :o)

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. :o)

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

> > >

> > >

> > >

> > > ---------------------------------

> > >

Link to comment
Share on other sites

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! :o) 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. :o) 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! " :o) 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! :o)

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. :o)

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

> > >

> > >

> > >

> > > ---------------------------------

> > >

Link to comment
Share on other sites

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

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > >

Link to comment
Share on other sites

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

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > >

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...