On a downer!!

[Guest guest]

Les,

No wonder you are frustrated with the good old NHS !!! Everything seems to

take forever.

Sorry you are feeling down, it's awful when you feel like that and you just

wish for a 'normal' (what ever that is LOL) life.

Sending huge hugs to you all and hope to see you next weekend. I am so

looking forward to seeing everyone again and being with my 'family'.

((((Hugs))))

Elaine mum to Elise(14yrs) & Jack(9yrs) CHaRGE

Scotland

[Guest guest]

Dear Les,

Oh dear, downers are bummers. Maybe it was the rain. Or exhaustion-too many

'fun' trips lately ?lol. If its any consolation- does it all. I don't

know how. I won't get on them.

U know, Di has no vision on left, crappy on the right, and I have pictures

of her at 6 yrs driving a motorized " Barbie " car-a big one-holds 2 kids-up and

down the deadend street, with just a little cuing from Dad. And she gets on

the rides. She'd go down the flume with one finger over the trach-screaming,

laughing all the way. She plays miniature golf, drives the go-carts, (don't

ask me how-that's also a Dad thing) but he's in one behind her-not sitting

beside her. I heard he was absolutely inspiring-or threatening-the first time

he talked them into letting her drive one.

My guess is, it'll be you having the heart attacks, as her spirit lifts her

way behind what you think she should or could do. Just buckle up and be

ready. Sunday she and I spent 5 hours standing in the rain fishing. (her new

found hobby.) She'll even put the worms on her own hook-bless her little self!

LOL. Just make sure the camera's working!

Love, in Ma. (, 21 yrs)

[Guest guest]

Hi guys

On a downer!! went away over night to a theme park which was funded for us

by a grant through the 'princess trust' weather dreadful, kids loved it, and

we got soaked, poor Amelie's spent her time in her pram, wandering around

watching our kids manic over the rides, i couldn't help think poor Amelie

never going to understand and enjoy this kind of thing, also I was much more

aware of disabled access....or the lack of it!! no rides or facilities

provided for a disabled child to go on a ride!! not something i would have

noticed before, but could not stop noticing today, I felt really bugged by

it all.

also in the hotel restaurant, people constantly looking at us, every time I

needed to suction her, which as you know is all the time, found it

irritating and wanted to confront a few people, but then I thought , well

its not very nice if your trying to eat, and green stuff is slurping along

the tubing!! I know it would put me of my food.

Then theres surgery and my long awaited second opinion, heard nothing and

the clock and time is ticking, the weather is changing to cold and wet and I

feel so anxious, whats with these guys ...hurry up!!

OH, thats my moan, sorry , fed up, anxious, and everything else!! Les x

[Guest guest]

It is ok, Lovely Les--we all have those days and yours hit today.

look toward tomorrow and know we love you.

pam

[Guest guest]

-

What a joyful picture you paint of Di! Her spirit must be humongous!

Michele W

[Guest guest]

Lesley-

I'm sorry you had such a lousy day. With so much looming in the near future --

surgery, school, winter -- it's no wonder you are vulnerable to " it " hitting you

so hard. Let yourself have this moment of " blah " and know it will pass. I

remember when I was at the bottom when school ended and summer began and I was

losing it. I don't remember all the details, but I do remember the feeling --

sounds similarly awful. Sometimes, I just need a long, hot shower while no one

else is home and I can cry and scream and release all that... argh... I don't

even have a word to describe the yuck.

The world is hard for our kids. It's not fair. There's nothing fair or

reasonable about it -- nothing that makes sense of the troubles they have to

endure and the misunderstandings and misjudgements from " outsiders " . But we get

nowhere by wallowing in the murkiness of that. Gosh, could you get up in the

morning and get on with each day if you let yourself go there??

It does get easier. If you could just get this surgery done and get little

Amelie's health stable, you could move on to the next step and feel like you're

making some progress. You'll get there.

Hugs-

Michele W

[Guest guest]

Hey Les-

Sorry to see you down but remember it will lift. Some days have to

be just that-one day as if yesterday and tomorrow don't exist. Then

when you shake it you can enjoy life and be glad for what you do

have. You know how it works, today stinks but tomorrow will be

sunny!! :-)

Janay

>

> Hi guys

>

> On a downer!! went away over night to a theme park which was

funded for us

> by a grant through the 'princess trust' weather dreadful, kids

loved it, and

> we got soaked, poor Amelie's spent her time in her pram, wandering

around

> watching our kids manic over the rides, i couldn't help think poor

Amelie

> never going to understand and enjoy this kind of thing, also I was

much more

> aware of disabled access....or the lack of it!! no rides or

facilities

> provided for a disabled child to go on a ride!! not something i

would have

> noticed before, but could not stop noticing today, I felt really

bugged by

> it all.

> also in the hotel restaurant, people constantly looking at us,

every time I

> needed to suction her, which as you know is all the time, found it

> irritating and wanted to confront a few people, but then I

thought , well

> its not very nice if your trying to eat, and green stuff is

slurping along

> the tubing!! I know it would put me of my food.

>

> Then theres surgery and my long awaited second opinion, heard

nothing and

> the clock and time is ticking, the weather is changing to cold and

wet and I

> feel so anxious, whats with these guys ...hurry up!!

>

> OH, thats my moan, sorry , fed up, anxious, and everything else!!

Les x

>

>

>

[Guest guest]

i no how it is i see people m ore disabled thanme soem of my other firends

who cant get outa their chairs so they cant really stay the night coz itd

take a hoist to lift them only see them for a night at karingal and thats

finnished with LOL what im trying to say is i feel sorry for people like

that when i can go off and spend the night with sev or shilr have them here

while all these other people i no would love to do it but they can only do

lunch LOL and ive had resteraunt people look at me and soem of myfriends

when weve been out with yuth group with northcott theres me not eating

theres sev and mia being fed i kinda think well hey those people havent

seen people like us befor so it must be strange to them LOL and who knows

but maybe im right its nuts and as for sutpid hosp they r stupid mum wasnt

havle to get on to my endo lady from about july till about last week sge

never rang back then she was like oh still having a period r u oh then come

in spetember then um thanks u could of told us that three weeks ago LOL

ellen

>

> Hey Les-

>

> Sorry to see you down but remember it will lift. Some days have to

> be just that-one day as if yesterday and tomorrow don't exist. Then

> when you shake it you can enjoy life and be glad for what you do

> have. You know how it works, today stinks but tomorrow will be

> sunny!! :-)

>

> Janay

>

>

> >

> > Hi guys

> >

> > On a downer!! went away over night to a theme park which was

> funded for us

> > by a grant through the 'princess trust' weather dreadful, kids

> loved it, and

> > we got soaked, poor Amelie's spent her time in her pram, wandering

> around

> > watching our kids manic over the rides, i couldn't help think poor

> Amelie

> > never going to understand and enjoy this kind of thing, also I was

> much more

> > aware of disabled access....or the lack of it!! no rides or

> facilities

> > provided for a disabled child to go on a ride!! not something i

> would have

> > noticed before, but could not stop noticing today, I felt really

> bugged by

> > it all.

> > also in the hotel restaurant, people constantly looking at us,

> every time I

> > needed to suction her, which as you know is all the time, found it

> > irritating and wanted to confront a few people, but then I

> thought , well

> > its not very nice if your trying to eat, and green stuff is

> slurping along

> > the tubing!! I know it would put me of my food.

> >

> > Then theres surgery and my long awaited second opinion, heard

> nothing and

> > the clock and time is ticking, the weather is changing to cold and

> wet and I

> > feel so anxious, whats with these guys ...hurry up!!

> >

> > OH, thats my moan, sorry , fed up, anxious, and everything else!!

> Les x

> >

> >

> >

[Guest guest]

Les, any chance you all will be hopping the pond next summer for the

conference? Amelie would love Disneyland! There are plenty of gentle

rides and you can get a disabled pass which would allow separate

wheelchair boarding if needed or waiting in an alternate line if

your child cannot stand in a line. They allow a little extra time to

help board these guests. I think she would LOVE " It's a Small

World " . It's annoying for some adults (LOL) but the kids LOVE it! My

son cried and smeared snot all over his face while waiting in line

(he doesn't like crowds or unfamiliar places) but once he got on the

boat and started to hear the music, he was singing at the top of his

lungs through his tears and just staring in wonder at everything.

Disney was also great about preparing meals according to special

needs and even heat up 's canned raviolis, plated them and

brought them out with everyone else's food. I know because of health

licensing that they shouldn't have done that, but I was incredibly

touched that they did because it is not often we get to a restaurant

together as a family due to not eating anything but those

raviolis!

Anyway, if you're coming over for the conference, we'd love to plan

a day there with you all! We plan on staying on until the Aug 1, but

moving to Homewood Suites in Anaheim to be closer to the action!

[Guest guest]

, how I would love to be able to say yes!! no chance for three

years anyway due to my degree and lack of funds but once I get qualified and

back in work, skys the limit so one day we shall meet up with you all!

*Thanks everyone for the perk up,* only today was slightly worse, I decided

to ring the second opinion hospital to see whats happening, I was told the

surgeon concerned had read the letter and marked her as urgent, great I said

when will we see him, she says theres no appointment in the system but

urgent means within 6 weeks!! 6 weeks in the UK means October / November

before we will go in for surgery, and thats the worst time in the UK for

beds on ICU plus brochiloitis will set in October, so every premmie and weak

child will need a bed, its disastrous!!! rang our paed consultant to discuss

options but she is away until Monday, so its a case of sit tight and wait

for Monday, not that I think it will change much.

Tomorrow Amelie is having all her winter vacs synagis not until October, but

the prenevar and pnuemococcal Flu etc will all be done tomorrow, one other

thing out of the way.

Fleur's kidney and bladder ultra sound was this morning and they said she

looks fine!! this worried me further because of the recurrent UTI's and

seizures so I have not got a clue whats going on with her, we see the

consultant a week Monday hopefully he has a plan of action!

Well we are over the theme park and rides, Darren has a trapped nerve in his

neck from the Excalibur 2 ride which goes upside down!! that will teach him,

were too old for it!! hes walking round with a matching head tilt to Amelie,

they look cute together!

, Diane's fair ground activities raised a smile, I so hope you are all

right and things do start to improve.

Physio for Amelie came this morning I just made it back in time, I asked

about the therasuit therapy, which some mums on here recommended, dont think

we have it in the UK but she will get back to me about it, and Amelie

managed to SIT UP all by herself for a split second before falling sideways,

she put her hands on her legs for support, GREAT to see, and something to

work on , but our physio was amazed as she hasn't seen Amelie for weeks, so

that's something positive.

WELL DONE AMELIE!

well downer frowner and grey hairs appearing, but after reading my posts

cheering up, thanks guys hugs Les x

>

> Les, any chance you all will be hopping the pond next summer for the

> conference? Amelie would love Disneyland! There are plenty of gentle

> rides and you can get a disabled pass which would allow separate

> wheelchair boarding if needed or waiting in an alternate line if

> your child cannot stand in a line. They allow a little extra time to

> help board these guests. I think she would LOVE " It's a Small

> World " . It's annoying for some adults (LOL) but the kids LOVE it! My

> son cried and smeared snot all over his face while waiting in line

> (he doesn't like crowds or unfamiliar places) but once he got on the

> boat and started to hear the music, he was singing at the top of his

> lungs through his tears and just staring in wonder at everything.

> Disney was also great about preparing meals according to special

> needs and even heat up 's canned raviolis, plated them and

> brought them out with everyone else's food. I know because of health

> licensing that they shouldn't have done that, but I was incredibly

> touched that they did because it is not often we get to a restaurant

> together as a family due to not eating anything but those

> raviolis!

> Anyway, if you're coming over for the conference, we'd love to plan

> a day there with you all! We plan on staying on until the Aug 1, but

> moving to Homewood Suites in Anaheim to be closer to the action!

>

>

>

[Guest guest]

Hi, Les.

I second Janay. Things will turn around, but in the

meantime it is frustrating.

Sending good thoughts your way,

ina, mom to Luca (3) & Vinny (14 months w/ cHARgE)

--- jkhayes95 wrote:

> Hey Les-

>

> Sorry to see you down but remember it will lift.

> Some days have to

> be just that-one day as if yesterday and tomorrow

> don't exist. Then

> when you shake it you can enjoy life and be glad for

> what you do

> have. You know how it works, today stinks but

> tomorrow will be

> sunny!! :-)

>

> Janay

>

>

> >

> > Hi guys

> >

> > On a downer!! went away over night to a theme park

> which was

> funded for us

> > by a grant through the 'princess trust' weather

> dreadful, kids

> loved it, and

> > we got soaked, poor Amelie's spent her time in her

> pram, wandering

> around

> > watching our kids manic over the rides, i couldn't

> help think poor

> Amelie

> > never going to understand and enjoy this kind of

> thing, also I was

> much more

> > aware of disabled access....or the lack of it!! no

> rides or

> facilities

> > provided for a disabled child to go on a ride!!

> not something i

> would have

> > noticed before, but could not stop noticing today,

> I felt really

> bugged by

> > it all.

> > also in the hotel restaurant, people constantly

> looking at us,

> every time I

> > needed to suction her, which as you know is all

> the time, found it

> > irritating and wanted to confront a few people,

> but then I

> thought , well

> > its not very nice if your trying to eat, and green

> stuff is

> slurping along

> > the tubing!! I know it would put me of my food.

> >

> > Then theres surgery and my long awaited second

> opinion, heard

> nothing and

> > the clock and time is ticking, the weather is

> changing to cold and

> wet and I

> > feel so anxious, whats with these guys ...hurry

> up!!

> >

> > OH, thats my moan, sorry , fed up, anxious, and

> everything else!!

> Les x

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

>

>

>

__________________________________________________

[Guest guest]

les,

big hugs to you---

Re: Re: On a downer!!

Hi, Les.

I second Janay. Things will turn around, but in the

meantime it is frustrating.

Sending good thoughts your way,

ina, mom to Luca (3) & Vinny (14 months w/ cHARgE)

--- jkhayes95 wrote:

> Hey Les-

>

> Sorry to see you down but remember it will lift.

> Some days have to

> be just that-one day as if yesterday and tomorrow

> don't exist. Then

> when you shake it you can enjoy life and be glad for

> what you do

> have. You know how it works, today stinks but

> tomorrow will be

> sunny!! :-)

>

> Janay

>

>

> >

> > Hi guys

> >

> > On a downer!! went away over night to a theme park

> which was

> funded for us

> > by a grant through the 'princess trust' weather

> dreadful, kids

> loved it, and

> > we got soaked, poor Amelie's spent her time in her

> pram, wandering

> around

> > watching our kids manic over the rides, i couldn't

> help think poor

> Amelie

> > never going to understand and enjoy this kind of

> thing, also I was

> much more

> > aware of disabled access....or the lack of it!! no

> rides or

> facilities

> > provided for a disabled child to go on a ride!!

> not something i

> would have

> > noticed before, but could not stop noticing today,

> I felt really

> bugged by

> > it all.

> > also in the hotel restaurant, people constantly

> looking at us,

> every time I

> > needed to suction her, which as you know is all

> the time, found it

> > irritating and wanted to confront a few people,

> but then I

> thought , well

> > its not very nice if your trying to eat, and green

> stuff is

> slurping along

> > the tubing!! I know it would put me of my food.

> >

> > Then theres surgery and my long awaited second

> opinion, heard

> nothing and

> > the clock and time is ticking, the weather is

> changing to cold and

> wet and I

> > feel so anxious, whats with these guys ...hurry

> up!!

> >

> > OH, thats my moan, sorry , fed up, anxious, and

> everything else!!

> Les x

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hugs to you Les!! I know the feeling of people looking at you and

whispering. I hope you get some answers soon.

Crystal mom to (10), (3), and Eva (16 month CHARGEr)

wife to Dan

>

> Hi guys

>

> On a downer!! went away over night to a theme park which was

funded for us

> by a grant through the 'princess trust' weather dreadful, kids

loved it, and

> we got soaked, poor Amelie's spent her time in her pram, wandering

around

> watching our kids manic over the rides, i couldn't help think poor

Amelie

> never going to understand and enjoy this kind of thing, also I was

much more

> aware of disabled access....or the lack of it!! no rides or

facilities

> provided for a disabled child to go on a ride!! not something i

would have

> noticed before, but could not stop noticing today, I felt really

bugged by

> it all.

> also in the hotel restaurant, people constantly looking at us,

every time I

> needed to suction her, which as you know is all the time, found it

> irritating and wanted to confront a few people, but then I

thought , well

> its not very nice if your trying to eat, and green stuff is

slurping along

> the tubing!! I know it would put me of my food.

>

> Then theres surgery and my long awaited second opinion, heard

nothing and

> the clock and time is ticking, the weather is changing to cold and

wet and I

> feel so anxious, whats with these guys ...hurry up!!

>

> OH, thats my moan, sorry , fed up, anxious, and everything else!!

Les x

>

>

>

[Guest guest]

Les,

Doesn't help much now, I know...but it does get better - PROMISE!!! Kennedy

couldn't have gone on much back at Am's age, either, but now she's a NUTZOID

for rides, the bigger, faster and scarier- the better...

Lots of love,

Mom to Kennedy 8 (CHARGE), 17, 15, and wife to Graeme

New Brunswick, Canada

>

> Hi guys

>

> On a downer!! went away over night to a theme park which was funded for us

> by a grant through the 'princess trust' weather dreadful, kids loved it,

> and

> we got soaked, poor Amelie's spent her time in her pram, wandering around

> watching our kids manic over the rides, i couldn't help think poor Amelie

> never going to understand and enjoy this kind of thing, also I was much

> more

> aware of disabled access....or the lack of it!! no rides or facilities

> provided for a disabled child to go on a ride!! not something i would have

> noticed before, but could not stop noticing today, I felt really bugged by

> it all.

> also in the hotel restaurant, people constantly looking at us, every time

> I

> needed to suction her, which as you know is all the time, found it

> irritating and wanted to confront a few people, but then I thought , well

> its not very nice if your trying to eat, and green stuff is slurping along

> the tubing!! I know it would put me of my food.

>

> Then theres surgery and my long awaited second opinion, heard nothing and

> the clock and time is ticking, the weather is changing to cold and wet and

> I

> feel so anxious, whats with these guys ...hurry up!!

>

> OH, thats my moan, sorry , fed up, anxious, and everything else!! Les x

>

>

[Guest guest]

Thanks , this is the first time someone has referred to Amelie as Am's

on the listserv, touched me because we call her this all the time at

home, although I dont like shortening our girls names, I cant help myself

with Amelie, shes also known as Ameechops, for her chunky cheeks!! I am fine

it was one of those miserable days!!

cheers Lesx

>

> Les,

> Doesn't help much now, I know...but it does get better - PROMISE!!!

> Kennedy

> couldn't have gone on much back at Am's age, either, but now she's a

> NUTZOID

> for rides, the bigger, faster and scarier- the better...

> Lots of love,

>

>

>

> Mom to Kennedy 8 (CHARGE), 17, 15, and wife to Graeme

>

> New Brunswick, Canada

>

> On 8/29/06, Amelie Chan

<amelie.m.chan@...<amelie.m.chan%40googlemail.com>>

> wrote:

> >

> > Hi guys

> >

> > On a downer!! went away over night to a theme park which was funded for

> us

> > by a grant through the 'princess trust' weather dreadful, kids loved it,

> > and

> > we got soaked, poor Amelie's spent her time in her pram, wandering

> around

> > watching our kids manic over the rides, i couldn't help think poor

> Amelie

> > never going to understand and enjoy this kind of thing, also I was much

> > more

> > aware of disabled access....or the lack of it!! no rides or facilities

> > provided for a disabled child to go on a ride!! not something i would

> have

> > noticed before, but could not stop noticing today, I felt really bugged

> by

> > it all.

> > also in the hotel restaurant, people constantly looking at us, every

> time

> > I

> > needed to suction her, which as you know is all the time, found it

> > irritating and wanted to confront a few people, but then I thought ,

> well

> > its not very nice if your trying to eat, and green stuff is slurping

> along

> > the tubing!! I know it would put me of my food.

> >

> > Then theres surgery and my long awaited second opinion, heard nothing

> and

> > the clock and time is ticking, the weather is changing to cold and wet

> and

> > I

> > feel so anxious, whats with these guys ...hurry up!!

> >

> > OH, thats my moan, sorry , fed up, anxious, and everything else!! Les x

> >

> >

[Guest guest]

Yep, no matter how hard we try to hope they won't happen, they always

will... at least they don't last forever!

Hugs,

Lis

>

> Thanks , this is the first time someone has referred to Amelie as

> Am's

> on the listserv, touched me because we call her this all the time at

> home, although I dont like shortening our girls names, I cant help myself

> with Amelie, shes also known as Ameechops, for her chunky cheeks!! I am

> fine

> it was one of those miserable days!!

> cheers Lesx

>

>

> On 31/08/06, Weir <kawfolks@... <kawfolks%40gmail.com>> wrote:

> >

> > Les,

> > Doesn't help much now, I know...but it does get better - PROMISE!!!

> > Kennedy

> > couldn't have gone on much back at Am's age, either, but now she's a

> > NUTZOID

> > for rides, the bigger, faster and scarier- the better...

> > Lots of love,

> >

> >

> >

> > Mom to Kennedy 8 (CHARGE), 17, 15, and wife to Graeme

> >

> > New Brunswick, Canada

> >

> > On 8/29/06, Amelie Chan

<amelie.m.chan@...<amelie.m.chan%40googlemail.com>

> <amelie.m.chan%40googlemail.com>>

>

> > wrote:

> > >

> > > Hi guys

> > >

> > > On a downer!! went away over night to a theme park which was funded

> for

> > us

> > > by a grant through the 'princess trust' weather dreadful, kids loved

> it,

> > > and

> > > we got soaked, poor Amelie's spent her time in her pram, wandering

> > around

> > > watching our kids manic over the rides, i couldn't help think poor

> > Amelie

> > > never going to understand and enjoy this kind of thing, also I was

> much

> > > more

> > > aware of disabled access....or the lack of it!! no rides or facilities

> > > provided for a disabled child to go on a ride!! not something i would

> > have

> > > noticed before, but could not stop noticing today, I felt really

> bugged

> > by

> > > it all.

> > > also in the hotel restaurant, people constantly looking at us, every

> > time

> > > I

> > > needed to suction her, which as you know is all the time, found it

> > > irritating and wanted to confront a few people, but then I thought ,

> > well

> > > its not very nice if your trying to eat, and green stuff is slurping

> > along

> > > the tubing!! I know it would put me of my food.

> > >

> > > Then theres surgery and my long awaited second opinion, heard nothing

> > and

> > > the clock and time is ticking, the weather is changing to cold and wet

> > and

> > > I

> > > feel so anxious, whats with these guys ...hurry up!!

> > >

> > > OH, thats my moan, sorry , fed up, anxious, and everything else!! Les

> x

> > >

> > >