our little marvels

[Guest guest]

Hi, my name is eileen...I have four children, the youngest of which

has RSS.Her name is Imogen and she is 6 and a half.All I can say is

that after the first few years of worry and anxiety...you know the

sort of stuff..reflux...non feeding, tubes etc,,,,she is now a

wonderful little girl that everyone loves. Of course she is

small...I can't give you exact weights and measures because we have

given up worrying about that stuff...suffice to say she fits

comfortably into clothes made for 2 year olds. BUT....she is now

eating so tubes are a distant memory...she goes to the same

mainstream school as her older siblings, she has only slight

learning disabilities...has loads of friends and is full of

charm,confidence and the usual cheekiness of any 6 year old. Forget

the 'dysmorphic features' of the text books...our little girl is

absolutley beautiful and we wouldn't swap her for the world. I hope

this is of help of anyone who has children who have been newly

diagnosed. Trust me...things just get better and better!!

lots of love,

Eileen xx

[Guest guest]

Eileen,

Thanks for your story. It really does make me think that there may

be light at the end of this tunnel. I pray that will end up

as well Imogen has done. I am looking forward to the day when tubes

are only a memory, but I worry with . He is still very small

and I have a feeling that this tube will be a part of his life for a

very long time. But, I have to be thankful because he has made it

through so much so far, and I am sure being as strong a determined as

he is, he will make the best of his life no matter what arises. He

is only 18 months old now, but he does have such a desire, you can

see it. He has accomplished so much on his own, being that we cannot

get therapists to do home visits. I am so proud of him. We just

weighed him and he is finally 13 lbs. 13.2 to be exact. That is a

big accomplishment, too. ) I am so happy!

Take care and that you for your encouraging words,

Jodi R.

IUGR/RSS

13.2 lbs, and 25 1/2 in.

> Hi, my name is eileen...I have four children, the youngest of which

> has RSS.Her name is Imogen and she is 6 and a half.All I can say is

> that after the first few years of worry and anxiety...you know the

> sort of stuff..reflux...non feeding, tubes etc,,,,she is now a

> wonderful little girl that everyone loves. Of course she is

> small...I can't give you exact weights and measures because we have

> given up worrying about that stuff...suffice to say she fits

> comfortably into clothes made for 2 year olds. BUT....she is now

> eating so tubes are a distant memory...she goes to the same

> mainstream school as her older siblings, she has only slight

> learning disabilities...has loads of friends and is full of

> charm,confidence and the usual cheekiness of any 6 year old. Forget

> the 'dysmorphic features' of the text books...our little girl is

> absolutley beautiful and we wouldn't swap her for the world. I hope

> this is of help of anyone who has children who have been newly

> diagnosed. Trust me...things just get better and better!!

> lots of love,

> Eileen xx

[Guest guest]

Hi Jodi, thanks for your email. It did seem to us that Imogen would never be

free of her gastrostomy tube...and the awful vomiting that followed every feed.

Our consultant even said he thought she would always have her tube.At the age of

2 she could not eat so much as a Skip (a crisp...potato chip) without having a

coughing fit and vomiting. Then almost overnight in her third year she just

began eating!! Her weight was monitored for 3 months and her weight remained

constant enough to be rid of the tube! She now has a tiny scar on her tummy that

she is proud to show off to anyone who shows the slightest interest!

So keep positive...best of luck with ...13lbs is absolutley brilliant!

Imogen doesn't weigh much more than that at 6 and a half so you're doing really

well!

take care, Eileen X

rssboy2002@... wrote:

Eileen,

Thanks for your story. It really does make me think that there may

be light at the end of this tunnel. I pray that will end up

as well Imogen has done. I am looking forward to the day when tubes

are only a memory, but I worry with . He is still very small

and I have a feeling that this tube will be a part of his life for a

very long time. But, I have to be thankful because he has made it

through so much so far, and I am sure being as strong a determined as

he is, he will make the best of his life no matter what arises. He

is only 18 months old now, but he does have such a desire, you can

see it. He has accomplished so much on his own, being that we cannot

get therapists to do home visits. I am so proud of him. We just

weighed him and he is finally 13 lbs. 13.2 to be exact. That is a

big accomplishment, too. ) I am so happy!

Take care and that you for your encouraging words,

Jodi R.

IUGR/RSS

13.2 lbs, and 25 1/2 in.

> Hi, my name is eileen...I have four children, the youngest of which

> has RSS.Her name is Imogen and she is 6 and a half.All I can say is

> that after the first few years of worry and anxiety...you know the

> sort of stuff..reflux...non feeding, tubes etc,,,,she is now a

> wonderful little girl that everyone loves. Of course she is

> small...I can't give you exact weights and measures because we have

> given up worrying about that stuff...suffice to say she fits

> comfortably into clothes made for 2 year olds. BUT....she is now

> eating so tubes are a distant memory...she goes to the same

> mainstream school as her older siblings, she has only slight

> learning disabilities...has loads of friends and is full of

> charm,confidence and the usual cheekiness of any 6 year old. Forget

> the 'dysmorphic features' of the text books...our little girl is

> absolutley beautiful and we wouldn't swap her for the world. I hope

> this is of help of anyone who has children who have been newly

> diagnosed. Trust me...things just get better and better!!

> lots of love,

> Eileen xx

[Guest guest]

-- Hello Eileen I just wanted to let you know that these words

touched me you said, and I am going to try to look at it this way and

just ease up and enjoy being with him as a little miracle and enjoy

him even through the rough journey we have ahead but, live life to

the fullist!!! He is only going to be 4 1/2 once I need to look at it

that way and enjoy that age!! They grow up to quick as it is!! Thanks

and hugs to you!! mom to s 4 1/2 26 pounds

33 inches 12 month clothes 6 infant shoe!! Ps... I read also to

where you said Imogen was 6 years and was like only maybe 13 pounds

in weight???? I was just wondering if that is what you meant that is

super tiny?(My 's bone age is at age 1 1/2 to a 2 year old

right now) Is here picture going to be on here? I would love to see

her!! As soon as they fix the photo section!! Merry

Christmas!!!

- In RSS-Support , " eileenreid2003 "

wrote:

> Hi, my name is eileen...I have four children, the youngest of which

> has RSS.Her name is Imogen and she is 6 and a half.All I can say is

> that after the first few years of worry and anxiety...you know the

> sort of stuff..reflux...non feeding, tubes etc,,,,she is now a

> wonderful little girl that everyone loves. Of course she is

> small...I can't give you exact weights and measures because we have

> given up worrying about that stuff...suffice to say she fits

> comfortably into clothes made for 2 year olds. BUT....she is now

> eating so tubes are a distant memory...she goes to the same

> mainstream school as her older siblings, she has only slight

> learning disabilities...has loads of friends and is full of

> charm,confidence and the usual cheekiness of any 6 year old. Forget

> the 'dysmorphic features' of the text books...our little girl is

> absolutley beautiful and we wouldn't swap her for the world. I hope

> this is of help of anyone who has children who have been newly

> diagnosed. Trust me...things just get better and better!!

> lots of love,

> Eileen xx

[Guest guest]

hello christine yes Imogen is severe Rss...so she is about 16lbs....don't know

her exact height...but she is the height of the average 2 year old at a guess.

The clothes that fit are 12-24 months. She is thin...but RSS kids tend to be

naturally thin.Her shoe size is 5.She was born full term weighing just 2lbs and

13oz and has all the characteristics of RSS...including the incurved little

finger.She is cute as a button tho with blue eyes and blonde hair and if I had a

pound for everyone who has said she looks just like a little doll I'd be very

rich by now!

Yes, I think you have to try and relax about everything and enjoy your child as

he is and as he is meant to be. No amount of pumping liquid foods and injecting

hormones is going to make too much difference at the end of the day and just

causes heartache for us and our children. Sorry if I'm being controversial!

We've just bought a digital camera and a scanner so hopefully we'll figure out

how to use them soon and I'll be able to put some pictures of her on the site

for you....when it's working!!

Best of luck to you and and have a lovely christmas

Eileenxxx

little1tobein2003@... wrote:

-- Hello Eileen I just wanted to let you know that these words

touched me you said, and I am going to try to look at it this way and

just ease up and enjoy being with him as a little miracle and enjoy

him even through the rough journey we have ahead but, live life to

the fullist!!! He is only going to be 4 1/2 once I need to look at it

that way and enjoy that age!! They grow up to quick as it is!! Thanks

and hugs to you!! mom to s 4 1/2 26 pounds

33 inches 12 month clothes 6 infant shoe!! Ps... I read also to

where you said Imogen was 6 years and was like only maybe 13 pounds

in weight???? I was just wondering if that is what you meant that is

super tiny?(My 's bone age is at age 1 1/2 to a 2 year old

right now) Is here picture going to be on here? I would love to see

her!! As soon as they fix the photo section!! Merry

Christmas!!!

- In RSS-Support , " eileenreid2003 "

wrote:

> Hi, my name is eileen...I have four children, the youngest of which

> has RSS.Her name is Imogen and she is 6 and a half.All I can say is

> that after the first few years of worry and anxiety...you know the

> sort of stuff..reflux...non feeding, tubes etc,,,,she is now a

> wonderful little girl that everyone loves. Of course she is

> small...I can't give you exact weights and measures because we have

> given up worrying about that stuff...suffice to say she fits

> comfortably into clothes made for 2 year olds. BUT....she is now

> eating so tubes are a distant memory...she goes to the same

> mainstream school as her older siblings, she has only slight

> learning disabilities...has loads of friends and is full of

> charm,confidence and the usual cheekiness of any 6 year old. Forget

> the 'dysmorphic features' of the text books...our little girl is

> absolutley beautiful and we wouldn't swap her for the world. I hope

> this is of help of anyone who has children who have been newly

> diagnosed. Trust me...things just get better and better!!

> lots of love,

> Eileen xx

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

[Guest guest]

Eileen,

Thank you for your words. We feel the same way about Alyssa. Everyone

comments on her size and appearance and she is our angel. My daughter

(Alyssa's mother) has been very cautious in her considerations for treatment

and I appreciate that in her. Thank you again.

Donna, mother to Dayna and grandmother of Alyssa Lynn Faith Carney

Re: Re: our little marvels

hello christine yes Imogen is severe Rss...so she is about 16lbs....don't

know her exact height...but she is the height of the average 2 year old at a

guess. The clothes that fit are 12-24 months. She is thin...but RSS kids

tend to be naturally thin.Her shoe size is 5.She was born full term weighing

just 2lbs and 13oz and has all the characteristics of RSS...including the

incurved little finger.She is cute as a button tho with blue eyes and blonde

hair and if I had a pound for everyone who has said she looks just like a

little doll I'd be very rich by now!

Yes, I think you have to try and relax about everything and enjoy your child

as he is and as he is meant to be. No amount of pumping liquid foods and

injecting hormones is going to make too much difference at the end of the

day and just causes heartache for us and our children. Sorry if I'm being

controversial!

We've just bought a digital camera and a scanner so hopefully we'll figure

out how to use them soon and I'll be able to put some pictures of her on the

site for you....when it's working!!

Best of luck to you and and have a lovely christmas

Eileenxxx

little1tobein2003@... wrote:

-- Hello Eileen I just wanted to let you know that these words

touched me you said, and I am going to try to look at it this way and

just ease up and enjoy being with him as a little miracle and enjoy

him even through the rough journey we have ahead but, live life to

the fullist!!! He is only going to be 4 1/2 once I need to look at it

that way and enjoy that age!! They grow up to quick as it is!! Thanks

and hugs to you!! mom to s 4 1/2 26 pounds

33 inches 12 month clothes 6 infant shoe!! Ps... I read also to

where you said Imogen was 6 years and was like only maybe 13 pounds

in weight???? I was just wondering if that is what you meant that is

super tiny?(My 's bone age is at age 1 1/2 to a 2 year old

right now) Is here picture going to be on here? I would love to see

her!! As soon as they fix the photo section!! Merry

Christmas!!!

- In RSS-Support , " eileenreid2003 "

wrote:

> Hi, my name is eileen...I have four children, the youngest of which

> has RSS.Her name is Imogen and she is 6 and a half.All I can say is

> that after the first few years of worry and anxiety...you know the

> sort of stuff..reflux...non feeding, tubes etc,,,,she is now a

> wonderful little girl that everyone loves. Of course she is

> small...I can't give you exact weights and measures because we have

> given up worrying about that stuff...suffice to say she fits

> comfortably into clothes made for 2 year olds. BUT....she is now

> eating so tubes are a distant memory...she goes to the same

> mainstream school as her older siblings, she has only slight

> learning disabilities...has loads of friends and is full of

> charm,confidence and the usual cheekiness of any 6 year old. Forget

> the 'dysmorphic features' of the text books...our little girl is

> absolutley beautiful and we wouldn't swap her for the world. I hope

> this is of help of anyone who has children who have been newly

> diagnosed. Trust me...things just get better and better!!

> lots of love,

> Eileen xx

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

[Guest guest]

Hi Donna....thankyou for that. I have to say I was looking through the photos on

the site last night and I was struck by how beautiful Alyssia is.She does look

just like a little angel!

Good luck to her, you and your daughter..

Eileen...

PS: Imogen's full name is Imogen Faith Reid!

Donna dmorris4@...> wrote:

Eileen,

Thank you for your words. We feel the same way about Alyssa. Everyone

comments on her size and appearance and she is our angel. My daughter

(Alyssa's mother) has been very cautious in her considerations for treatment

and I appreciate that in her. Thank you again.

Donna, mother to Dayna and grandmother of Alyssa Lynn Faith Carney

Re: Re: our little marvels

hello christine yes Imogen is severe Rss...so she is about 16lbs....don't

know her exact height...but she is the height of the average 2 year old at a

guess. The clothes that fit are 12-24 months. She is thin...but RSS kids

tend to be naturally thin.Her shoe size is 5.She was born full term weighing

just 2lbs and 13oz and has all the characteristics of RSS...including the

incurved little finger.She is cute as a button tho with blue eyes and blonde

hair and if I had a pound for everyone who has said she looks just like a

little doll I'd be very rich by now!

Yes, I think you have to try and relax about everything and enjoy your child

as he is and as he is meant to be. No amount of pumping liquid foods and

injecting hormones is going to make too much difference at the end of the

day and just causes heartache for us and our children. Sorry if I'm being

controversial!

We've just bought a digital camera and a scanner so hopefully we'll figure

out how to use them soon and I'll be able to put some pictures of her on the

site for you....when it's working!!

Best of luck to you and and have a lovely christmas

Eileenxxx

little1tobein2003@... wrote:

-- Hello Eileen I just wanted to let you know that these words

touched me you said, and I am going to try to look at it this way and

just ease up and enjoy being with him as a little miracle and enjoy

him even through the rough journey we have ahead but, live life to

the fullist!!! He is only going to be 4 1/2 once I need to look at it

that way and enjoy that age!! They grow up to quick as it is!! Thanks

and hugs to you!! mom to s 4 1/2 26 pounds

33 inches 12 month clothes 6 infant shoe!! Ps... I read also to

where you said Imogen was 6 years and was like only maybe 13 pounds

in weight???? I was just wondering if that is what you meant that is

super tiny?(My 's bone age is at age 1 1/2 to a 2 year old

right now) Is here picture going to be on here? I would love to see

her!! As soon as they fix the photo section!! Merry

Christmas!!!

- In RSS-Support , " eileenreid2003 "

wrote:

> Hi, my name is eileen...I have four children, the youngest of which

> has RSS.Her name is Imogen and she is 6 and a half.All I can say is

> that after the first few years of worry and anxiety...you know the

> sort of stuff..reflux...non feeding, tubes etc,,,,she is now a

> wonderful little girl that everyone loves. Of course she is

> small...I can't give you exact weights and measures because we have

> given up worrying about that stuff...suffice to say she fits

> comfortably into clothes made for 2 year olds. BUT....she is now

> eating so tubes are a distant memory...she goes to the same

> mainstream school as her older siblings, she has only slight

> learning disabilities...has loads of friends and is full of

> charm,confidence and the usual cheekiness of any 6 year old. Forget

> the 'dysmorphic features' of the text books...our little girl is

> absolutley beautiful and we wouldn't swap her for the world. I hope

> this is of help of anyone who has children who have been newly

> diagnosed. Trust me...things just get better and better!!

> lots of love,

> Eileen xx

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