Re: Wow what a great welcome

[Guest guest]

Hey Liz ... Welcome to the group!

I just wanted to say ... please don't think that you sound like your

whinning!!! We all need to vent and it's nice to have this place to

let it all out where people understand it!

I'm pretty sure that there are others from England on this site too

that might be of help to you with some of the $$ (I don't know how to

make a pound sign, the money kind, on my computer) issue. I'm sure

some have posted recently and will get back to you when they see your

post.

Nice to have you here ... I know how wonderful this site is and I'm

still learning every day.

Dawna

Matt 12, 11, Kaitlyn 8 and Noah 3 RSS

>

> Hi everybody...thank you so much for such a great response, im

> really impressed with this site and wish i had found it years ago.

> To update you on ...yes he does have sensory issues, he has

> had glue ear of some degree since his first hearing test at 6

> months, it does improve during the summer months though which is

why

> he has never been considered for grommets.

> We have always felt that has had a problem with different

> textures. But strangely he likes mushy non lumpy things like smooth

> porridge and bananas, aswell as hard crunchy, crispy things like

> pringles and biscuits. It seems to be the inbetween things that he

> wont eat. He will try new foods (tiny amounts under protest)and is

> far more adventurous now than he ever used to be, but he never

likes

> anything. I know i am lucky with the fact that he does eat so well

> and his nutrician is so good, but we are struggling financially as

> we spend about £40 aweek on s food alone. We are unable to

get

> any of the food on prescription and no one knows of any place where

> we can get assistance with paying for it.

> I really hope i dont sound like im moaning. I know how lucky we

are.

> But i am willing to try any new advice from this group as the so

> called experts we have been to really have no idea what RSS is all

> about. We live in Bristol, England. I have been in touch with the

> magic foundation in past and they are great but i have not been

able

> to find a similar foundation based in England.

> I am working on learning how to use this site properly but havnt

> worked out how to use chat yet. Im hoping this wont take long.

> Thanks again for your input so far. Liz. xxx

>

[Guest guest]

Hi Liz,

In answer to your question, there are others on this list from

England, also, Ireland, Scotland, The Netherlands, Turkey,

Canada, Mexico, Austrialia and of course USA.

Hopefully someone closer to you will respond soon.

I was wondering, have Geoarge been to see Dr. Stanhope in

London. He is one of the few experts on RSS. Also, is on

growth hormone? Have you considered it?

No need to respond if you feel these questions are too personal.

I hope this helps and welcome to our group.

Ken M

>

> Hi everybody...thank you so much for such a great response,

im

> really impressed with this site and wish i had found it years

ago.

> To update you on ...yes he does have sensory issues,

he has

> had glue ear of some degree since his first hearing test at 6

> months, it does improve during the summer months though

which is why

> he has never been considered for grommets.

> We have always felt that has had a problem with

different

> textures. But strangely he likes mushy non lumpy things like

smooth

> porridge and bananas, aswell as hard crunchy, crispy things

like

> pringles and biscuits. It seems to be the inbetween things that

he

> wont eat. He will try new foods (tiny amounts under protest)and

is

> far more adventurous now than he ever used to be, but he

never likes

> anything. I know i am lucky with the fact that he does eat so

well

> and his nutrician is so good, but we are struggling financially

as

> we spend about £40 aweek on s food alone. We are

unable to get

> any of the food on prescription and no one knows of any place

where

> we can get assistance with paying for it.

> I really hope i dont sound like im moaning. I know how lucky

we are.

> But i am willing to try any new advice from this group as the so

> called experts we have been to really have no idea what RSS is

all

> about. We live in Bristol, England. I have been in touch with the

> magic foundation in past and they are great but i have not been

able

> to find a similar foundation based in England.

> I am working on learning how to use this site properly but havnt

> worked out how to use chat yet. Im hoping this wont take long.

> Thanks again for your input so far. Liz. xxx

>

[Guest guest]

Liz,

There is the Child Growth Foundation in London, I believe. I know

they have an RSS group, but not sure of the numbers. I know they have

yearly conventions and speakers and gatherings. But you will find, if

you have not already, that this is the best family you will ever

have. The people are wonderful about everything, no matter how minor

or irrelevant it may seem. We've all been through some trying times

together and we somehow make it through.

Jodi Z

[Guest guest]

Liz - we are so glad you are here! I can just hear that beautiful

accent over the internet. My dh has always wanted to move to

England. We just moved to a new state here in the US again - this

is our 5th house in 8 years! LOL But, my dh called me from work the

other day and said " UM, what do you think about England? " I

said " why do you ask? " - you can imagine the hesitation in my

voice. He said " Would you like to move there? " I said - " How much

would you pay me? " LOL LOL Anyway, I don't think we are going

anywhere - but, it's a funny story nonetheless. I'm rambling -

sorry.....anyway.....

my son Ian is 2.5 and as I mentioned in a previous posthas sensory

issues as well. It's interesting to see the similarities between our

two boys - Ian too prefers one texture over another - without much

liking to anything inbetween. My only suggestion is to continue to

offer every texture at all times. Sometimes, Ian will not

even eat Yogurt - and out of the blue - he'll eat 2 ozs. Sometimes

its just " luck " and that's why I always try to offer something of

all tastes and textures at every meal - just in case that one time

he decides he likes it. Just a thought <grin>.

Keep us posted. Feel free to write, vent, cry, laugh here as much

as you need to. We enjoy the company!

- H

>

> Hi everybody...thank you so much for such a great response, im

> really impressed with this site and wish i had found it years ago.

> To update you on ...yes he does have sensory issues, he has

> had glue ear of some degree since his first hearing test at 6

> months, it does improve during the summer months though which is

why

> he has never been considered for grommets.

> We have always felt that has had a problem with different

> textures. But strangely he likes mushy non lumpy things like

smooth

> porridge and bananas, aswell as hard crunchy, crispy things like

> pringles and biscuits. It seems to be the inbetween things that he

> wont eat. He will try new foods (tiny amounts under protest)and is

> far more adventurous now than he ever used to be, but he never

likes

> anything. I know i am lucky with the fact that he does eat so well

> and his nutrician is so good, but we are struggling financially as

> we spend about £40 aweek on s food alone. We are unable to

get

> any of the food on prescription and no one knows of any place

where

> we can get assistance with paying for it.

> I really hope i dont sound like im moaning. I know how lucky we

are.

> But i am willing to try any new advice from this group as the so

> called experts we have been to really have no idea what RSS is all

> about. We live in Bristol, England. I have been in touch with the

> magic foundation in past and they are great but i have not been

able

> to find a similar foundation based in England.

> I am working on learning how to use this site properly but havnt

> worked out how to use chat yet. Im hoping this wont take long.

> Thanks again for your input so far. Liz. xxx

>