Re: Amelies home...yippeeeee....for how long??

[Guest guest]

You definitely need 'roasties'!!

Which is now symbolic for Lesley having a NICE day off-let's see...

then the next day, you must schedule a " tubby " ..however,

you may omit the " blub...blub....blub " part. We don't want to

lose you, you know!

And I, for sure, would " misplace " that phone for a few days.

I get such a boot out of telling people I'm not home right now.....dumb

phone.

Jeepers, you owe it to yourself!

Welcome home Luv!

[Guest guest]

Lesley,

Hooray that Amelie's home!! I hope she is home for a long, long time this

time. Take care of yourself too, now that she's home, and turn the phone and

doorbell off for a few days!

, mom to (4)

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

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Use Photomail to share photos without annoying attachments.

[Guest guest]

I am glad she is home, happy and feeling good.

Getting the next surgery over with and home from that is key, then hopefully

she will come home and stay home!!!!!!

Kim

> I'm taking bets on how long!!!

>

> seriously she is well and lovely to be home, she gets so excited

> when we come into the room she plays in almost as if she knows shes

> home, her little legs going mad and shaking her head.lovely sight.

>

> Thanks for all the support with the lift and hypotonia, she is

> bringing a man along in beginning March, so we shall see what

> happens next.

>

> I wish I could fly flo to Manchester everytime I am having a saga,

> she could sort everyone out for me!

> I am tired of discussion, and i have started cancelling

> appointments, you know when you cant be bothered, it all starts to

> drive you mad.

> But i know its not going away, so i need to get cracking with

> Schools the social crappy services and the vision team, its just

> hard to get motivated coz I think whats the point we will be back in

> shortly then i have to cancel everyone again!

>

> Bye for now

>

> love to Ellen

>

> Lesley x

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

yep stay home so people can see how marvelous she is lol

>

> I am glad she is home, happy and feeling good.

> Getting the next surgery over with and home from that is key, then

> hopefully

> she will come home and stay home!!!!!!

>

> Kim

>

>

>

>

> > I'm taking bets on how long!!!

> >

> > seriously she is well and lovely to be home, she gets so excited

> > when we come into the room she plays in almost as if she knows shes

> > home, her little legs going mad and shaking her head.lovely sight.

> >

> > Thanks for all the support with the lift and hypotonia, she is

> > bringing a man along in beginning March, so we shall see what

> > happens next.

> >

> > I wish I could fly flo to Manchester everytime I am having a saga,

> > she could sort everyone out for me!

> > I am tired of discussion, and i have started cancelling

> > appointments, you know when you cant be bothered, it all starts to

> > drive you mad.

> > But i know its not going away, so i need to get cracking with

> > Schools the social crappy services and the vision team, its just

> > hard to get motivated coz I think whats the point we will be back in

> > shortly then i have to cancel everyone again!

> >

> > Bye for now

> >

> > love to Ellen

> >

> > Lesley x

> >

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support groups does not constitute membership

> in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Thanks Ellen lets hope she ends up as great as you! and when she is

older you can give her some good advice first hand.

lol Lesley xxx

> >

> > > I'm taking bets on how long!!!

> > >

> > > seriously she is well and lovely to be home, she gets so

excited

> > > when we come into the room she plays in almost as if she knows

shes

> > > home, her little legs going mad and shaking her head.lovely

sight.

> > >

> > > Thanks for all the support with the lift and hypotonia, she is

> > > bringing a man along in beginning March, so we shall see what

> > > happens next.

> > >

> > > I wish I could fly flo to Manchester everytime I am having a

saga,

> > > she could sort everyone out for me!

> > > I am tired of discussion, and i have started cancelling

> > > appointments, you know when you cant be bothered, it all

starts to

> > > drive you mad.

> > > But i know its not going away, so i need to get cracking with

> > > Schools the social crappy services and the vision team, its

just

> > > hard to get motivated coz I think whats the point we will be

back in

> > > shortly then i have to cancel everyone again!

> > >

> > > Bye for now

> > >

> > > love to Ellen

> > >

> > > Lesley x

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > http://www.imagestation.com/album/?id=2117043995

> > >

> > > Membership of this email support groups does not constitute

membership

> > in the

> > > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > > For information about the CHARGE Syndrome

> > > Foundation or to become a member (and get the newsletter),

> > > please contact marion@... or visit

> > > the web site at http://www.chargesyndrome.org

> > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> > >

> > > 8th International

> > > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > > www.chargesyndrome.org or by calling 1-.

> > >

[Guest guest]

Lesley,

Sooo pleased and here's to a prolonged period at home for all of you. Enjoy

those " little legs going " and the shaking head.

On the flying me to Manchester bit, really you flatter me way more than I

have earned. I wish I could be of more help. It's always easier to see

through someone else's swamp (oh forgot to tell you one of my practice

supervisors when I was a student told me that when you are up to your knees

in crocodiles, it is hard to remember that the original intention was to

drain the swamp. Gues we are all here to remind you when the going gets

tough and those supposed to support you are driving you mad, the swamp still

needs draining so don't let the cocodiles get you, even if that means

stepping back from them for a bit. Hope all that makes sense. You can see

what they teach us in social work school! No wonder you are fed up with

" social crappy services " .

Don't feel anyhow about just enjoying your girls for a little while before

the scram starts again. Cancelling everything for a few days sounds great

to me so you can just have a sense of normality. That is why my favourite

time is the summer holidays when we largely just have fun once the

appointments are out of the way. And what about schools? I hope you don't

mean for Amelie? She is only one! We didn't request an educational

statement for until she was 18 months old and this was only to beat

the 2 year thing about parents requesting a statement before a child is 2

because we wanted to be in control of when she was statemented rather than

leave it to the professionals.

Oh, by the way, not wanting to give you even more work, but it is worth

checking out if you believe in nurseries whether you Local Authority will

fund one for your little 3 year old (sorry can't remember her name. I know

it is not Olivia; that's one of the other ones. Ah, Fleur. She is a child

in need and I have known L.As fund even private nurseries for children in

need.

On that note, before I get too carried away, you take good care of you and

get Darren to make some roasties and bring you a glass of red when you get

that well deserved soak.

Cyberhugs............

Flo

[Guest guest]

Thanks Flo

All sound advice, It has been a great week, Amelie is sat in her

chair (hydraulic thing with a tray for her toys) and she is happy

and playful, and watching TV I think she is anyway she stares at it

a lot! Her head flops to oneside a lot, as if its too heavy for her

to hold up for long periods, but she is improving in my opinion.

The OT adaptation woman has decided to put things on hold, when I

expressed my concerns of a lift..she said she wants to write to

Amelies Paed doctor and the neurologist!! about her prognosis... I

feel a 'get out' clause coming from these guys soon, especially

after Amelies christmas disaster, they probably dont want to chance

all that money, if she went down hill again!!! she said she will be

in touch once they have written back to her.

Summer ...cant wait sitting in the garden, and no bugs!! hopefully

and red wine..as for the roasties I need to start my diet today its

becoming uncomfortable..you know when your body tells you enough..no

more please and I feel bloated..so a difficult week ahead for Darren

I am bound to get moody..from starvation!!

love to you all

lol Lesley x

>

> Lesley,

> Sooo pleased and here's to a prolonged period at home for all of

you. Enjoy

> those " little legs going " and the shaking head.

>

> On the flying me to Manchester bit, really you flatter me way more

than I

> have earned. I wish I could be of more help. It's always easier

to see

> through someone else's swamp (oh forgot to tell you one of my

practice

> supervisors when I was a student told me that when you are up to

your knees

> in crocodiles, it is hard to remember that the original intention

was to

> drain the swamp. Gues we are all here to remind you when the

going gets

> tough and those supposed to support you are driving you mad, the

swamp still

> needs draining so don't let the cocodiles get you, even if that

means

> stepping back from them for a bit. Hope all that makes sense.

You can see

> what they teach us in social work school! No wonder you are fed

up with

> " social crappy services " .

>

> Don't feel anyhow about just enjoying your girls for a little

while before

> the scram starts again. Cancelling everything for a few days

sounds great

> to me so you can just have a sense of normality. That is why my

favourite

> time is the summer holidays when we largely just have fun once the

> appointments are out of the way. And what about schools? I hope

you don't

> mean for Amelie? She is only one! We didn't request an

educational

> statement for until she was 18 months old and this was

only to beat

> the 2 year thing about parents requesting a statement before a

child is 2

> because we wanted to be in control of when she was statemented

rather than

> leave it to the professionals.

>

> Oh, by the way, not wanting to give you even more work, but it is

worth

> checking out if you believe in nurseries whether you Local

Authority will

> fund one for your little 3 year old (sorry can't remember her

name. I know

> it is not Olivia; that's one of the other ones. Ah, Fleur. She

is a child

> in need and I have known L.As fund even private nurseries for

children in

> need.

>

> On that note, before I get too carried away, you take good care of

you and

> get Darren to make some roasties and bring you a glass of red when

you get

> that well deserved soak.

>

> Cyberhugs............

> Flo

>

>

>

[Guest guest]

Thanks Flo

All sound advice, It has been a great week, Amelie is sat in her

chair (hydraulic thing with a tray for her toys) and she is happy

and playful, and watching TV I think she is anyway she stares at it

a lot! Her head flops to oneside a lot, as if its too heavy for her

to hold up for long periods, but she is improving in my opinion.

The OT adaptation woman has decided to put things on hold, when I

expressed my concerns of a lift..she said she wants to write to

Amelies Paed doctor and the neurologist!! about her prognosis... I

feel a 'get out' clause coming from these guys soon, especially

after Amelies christmas disaster, they probably dont want to chance

all that money, if she went down hill again!!! she said she will be

in touch once they have written back to her.

Summer ...cant wait sitting in the garden, and no bugs!! hopefully

and red wine..as for the roasties I need to start my diet today its

becoming uncomfortable..you know when your body tells you enough..no

more please and I feel bloated..so a difficult week ahead for Darren

I am bound to get moody..from starvation!!

love to you all

lol Lesley x

>

> Lesley,

> Sooo pleased and here's to a prolonged period at home for all of

you. Enjoy

> those " little legs going " and the shaking head.

>

> On the flying me to Manchester bit, really you flatter me way more

than I

> have earned. I wish I could be of more help. It's always easier

to see

> through someone else's swamp (oh forgot to tell you one of my

practice

> supervisors when I was a student told me that when you are up to

your knees

> in crocodiles, it is hard to remember that the original intention

was to

> drain the swamp. Gues we are all here to remind you when the

going gets

> tough and those supposed to support you are driving you mad, the

swamp still

> needs draining so don't let the cocodiles get you, even if that

means

> stepping back from them for a bit. Hope all that makes sense.

You can see

> what they teach us in social work school! No wonder you are fed

up with

> " social crappy services " .

>

> Don't feel anyhow about just enjoying your girls for a little

while before

> the scram starts again. Cancelling everything for a few days

sounds great

> to me so you can just have a sense of normality. That is why my

favourite

> time is the summer holidays when we largely just have fun once the

> appointments are out of the way. And what about schools? I hope

you don't

> mean for Amelie? She is only one! We didn't request an

educational

> statement for until she was 18 months old and this was

only to beat

> the 2 year thing about parents requesting a statement before a

child is 2

> because we wanted to be in control of when she was statemented

rather than

> leave it to the professionals.

>

> Oh, by the way, not wanting to give you even more work, but it is

worth

> checking out if you believe in nurseries whether you Local

Authority will

> fund one for your little 3 year old (sorry can't remember her

name. I know

> it is not Olivia; that's one of the other ones. Ah, Fleur. She

is a child

> in need and I have known L.As fund even private nurseries for

children in

> need.

>

> On that note, before I get too carried away, you take good care of

you and

> get Darren to make some roasties and bring you a glass of red when

you get

> that well deserved soak.

>

> Cyberhugs............

> Flo

>

>

>

[Guest guest]

LOL the hsopital vending machines can do dreadful stuff u should see mum but

then she was getting fatter me being two years out of all hosptials and she

was lie y im not going on hopsitla junk LOL and dad allways gorged on ti and

he got high colesterol as a result so be careful with you hunger pangs in

those logn hosptial stays lol godo oen on the ot glad they are wanting to

check with the drs bet theyll say no to

>

> Thanks Flo

>

> All sound advice, It has been a great week, Amelie is sat in her

> chair (hydraulic thing with a tray for her toys) and she is happy

> and playful, and watching TV I think she is anyway she stares at it

> a lot! Her head flops to oneside a lot, as if its too heavy for her

> to hold up for long periods, but she is improving in my opinion.

>

> The OT adaptation woman has decided to put things on hold, when I

> expressed my concerns of a lift..she said she wants to write to

> Amelies Paed doctor and the neurologist!! about her prognosis... I

> feel a 'get out' clause coming from these guys soon, especially

> after Amelies christmas disaster, they probably dont want to chance

> all that money, if she went down hill again!!! she said she will be

> in touch once they have written back to her.

>

> Summer ...cant wait sitting in the garden, and no bugs!! hopefully

> and red wine..as for the roasties I need to start my diet today its

> becoming uncomfortable..you know when your body tells you enough..no

> more please and I feel bloated..so a difficult week ahead for Darren

> I am bound to get moody..from starvation!!

>

> love to you all

> lol Lesley x

>

>

>

>

>

> >

> > Lesley,

> > Sooo pleased and here's to a prolonged period at home for all of

> you. Enjoy

> > those " little legs going " and the shaking head.

> >

> > On the flying me to Manchester bit, really you flatter me way more

> than I

> > have earned. I wish I could be of more help. It's always easier

> to see

> > through someone else's swamp (oh forgot to tell you one of my

> practice

> > supervisors when I was a student told me that when you are up to

> your knees

> > in crocodiles, it is hard to remember that the original intention

> was to

> > drain the swamp. Gues we are all here to remind you when the

> going gets

> > tough and those supposed to support you are driving you mad, the

> swamp still

> > needs draining so don't let the cocodiles get you, even if that

> means

> > stepping back from them for a bit. Hope all that makes sense.

> You can see

> > what they teach us in social work school! No wonder you are fed

> up with

> > " social crappy services " .

> >

> > Don't feel anyhow about just enjoying your girls for a little

> while before

> > the scram starts again. Cancelling everything for a few days

> sounds great

> > to me so you can just have a sense of normality. That is why my

> favourite

> > time is the summer holidays when we largely just have fun once the

> > appointments are out of the way. And what about schools? I hope

> you don't

> > mean for Amelie? She is only one! We didn't request an

> educational

> > statement for until she was 18 months old and this was

> only to beat

> > the 2 year thing about parents requesting a statement before a

> child is 2

> > because we wanted to be in control of when she was statemented

> rather than

> > leave it to the professionals.

> >

> > Oh, by the way, not wanting to give you even more work, but it is

> worth

> > checking out if you believe in nurseries whether you Local

> Authority will

> > fund one for your little 3 year old (sorry can't remember her

> name. I know

> > it is not Olivia; that's one of the other ones. Ah, Fleur. She

> is a child

> > in need and I have known L.As fund even private nurseries for

> children in

> > need.

> >

> > On that note, before I get too carried away, you take good care of

> you and

> > get Darren to make some roasties and bring you a glass of red when

> you get

> > that well deserved soak.

> >

> > Cyberhugs............

> > Flo

> >

> >

> >

[Guest guest]

LOL the hsopital vending machines can do dreadful stuff u should see mum but

then she was getting fatter me being two years out of all hosptials and she

was lie y im not going on hopsitla junk LOL and dad allways gorged on ti and

he got high colesterol as a result so be careful with you hunger pangs in

those logn hosptial stays lol godo oen on the ot glad they are wanting to

check with the drs bet theyll say no to

>

> Thanks Flo

>

> All sound advice, It has been a great week, Amelie is sat in her

> chair (hydraulic thing with a tray for her toys) and she is happy

> and playful, and watching TV I think she is anyway she stares at it

> a lot! Her head flops to oneside a lot, as if its too heavy for her

> to hold up for long periods, but she is improving in my opinion.

>

> The OT adaptation woman has decided to put things on hold, when I

> expressed my concerns of a lift..she said she wants to write to

> Amelies Paed doctor and the neurologist!! about her prognosis... I

> feel a 'get out' clause coming from these guys soon, especially

> after Amelies christmas disaster, they probably dont want to chance

> all that money, if she went down hill again!!! she said she will be

> in touch once they have written back to her.

>

> Summer ...cant wait sitting in the garden, and no bugs!! hopefully

> and red wine..as for the roasties I need to start my diet today its

> becoming uncomfortable..you know when your body tells you enough..no

> more please and I feel bloated..so a difficult week ahead for Darren

> I am bound to get moody..from starvation!!

>

> love to you all

> lol Lesley x

>

>

>

>

>

> >

> > Lesley,

> > Sooo pleased and here's to a prolonged period at home for all of

> you. Enjoy

> > those " little legs going " and the shaking head.

> >

> > On the flying me to Manchester bit, really you flatter me way more

> than I

> > have earned. I wish I could be of more help. It's always easier

> to see

> > through someone else's swamp (oh forgot to tell you one of my

> practice

> > supervisors when I was a student told me that when you are up to

> your knees

> > in crocodiles, it is hard to remember that the original intention

> was to

> > drain the swamp. Gues we are all here to remind you when the

> going gets

> > tough and those supposed to support you are driving you mad, the

> swamp still

> > needs draining so don't let the cocodiles get you, even if that

> means

> > stepping back from them for a bit. Hope all that makes sense.

> You can see

> > what they teach us in social work school! No wonder you are fed

> up with

> > " social crappy services " .

> >

> > Don't feel anyhow about just enjoying your girls for a little

> while before

> > the scram starts again. Cancelling everything for a few days

> sounds great

> > to me so you can just have a sense of normality. That is why my

> favourite

> > time is the summer holidays when we largely just have fun once the

> > appointments are out of the way. And what about schools? I hope

> you don't

> > mean for Amelie? She is only one! We didn't request an

> educational

> > statement for until she was 18 months old and this was

> only to beat

> > the 2 year thing about parents requesting a statement before a

> child is 2

> > because we wanted to be in control of when she was statemented

> rather than

> > leave it to the professionals.

> >

> > Oh, by the way, not wanting to give you even more work, but it is

> worth

> > checking out if you believe in nurseries whether you Local

> Authority will

> > fund one for your little 3 year old (sorry can't remember her

> name. I know

> > it is not Olivia; that's one of the other ones. Ah, Fleur. She

> is a child

> > in need and I have known L.As fund even private nurseries for

> children in

> > need.

> >

> > On that note, before I get too carried away, you take good care of

> you and

> > get Darren to make some roasties and bring you a glass of red when

> you get

> > that well deserved soak.

> >

> > Cyberhugs............

> > Flo

> >

> >

> >

[Guest guest]

in fact hope they do one of my good friends from hosptial just died one of

my cfr ones its one of the\ose moemtbns where i wish the world wasnt so

harsh but it is xxxx love u

>

> LOL the hsopital vending machines can do dreadful stuff u should see mum

> but then she was getting fatter me being two years out of all hosptials and

> she was lie y im not going on hopsitla junk LOL and dad allways gorged on ti

> and he got high colesterol as a result so be careful with you hunger pangs

> in those logn hosptial stays lol godo oen on the ot glad they are wanting to

> check with the drs bet theyll say no to

>

>

> >

> > Thanks Flo

> >

> > All sound advice, It has been a great week, Amelie is sat in her

> > chair (hydraulic thing with a tray for her toys) and she is happy

> > and playful, and watching TV I think she is anyway she stares at it

> > a lot! Her head flops to oneside a lot, as if its too heavy for her

> > to hold up for long periods, but she is improving in my opinion.

> >

> > The OT adaptation woman has decided to put things on hold, when I

> > expressed my concerns of a lift..she said she wants to write to

> > Amelies Paed doctor and the neurologist!! about her prognosis... I

> > feel a 'get out' clause coming from these guys soon, especially

> > after Amelies christmas disaster, they probably dont want to chance

> > all that money, if she went down hill again!!! she said she will be

> > in touch once they have written back to her.

> >

> > Summer ...cant wait sitting in the garden, and no bugs!! hopefully

> > and red wine..as for the roasties I need to start my diet today its

> > becoming uncomfortable..you know when your body tells you enough..no

> > more please and I feel bloated..so a difficult week ahead for Darren

> > I am bound to get moody..from starvation!!

> >

> > love to you all

> > lol Lesley x

> >

> >

> >

> >

> >

> > >

> > > Lesley,

> > > Sooo pleased and here's to a prolonged period at home for all of

> > you. Enjoy

> > > those " little legs going " and the shaking head.

> > >

> > > On the flying me to Manchester bit, really you flatter me way more

> > than I

> > > have earned. I wish I could be of more help. It's always easier

> > to see

> > > through someone else's swamp (oh forgot to tell you one of my

> > practice

> > > supervisors when I was a student told me that when you are up to

> > your knees

> > > in crocodiles, it is hard to remember that the original intention

> > was to

> > > drain the swamp. Gues we are all here to remind you when the

> > going gets

> > > tough and those supposed to support you are driving you mad, the

> > swamp still

> > > needs draining so don't let the cocodiles get you, even if that

> > means

> > > stepping back from them for a bit. Hope all that makes sense.

> > You can see

> > > what they teach us in social work school! No wonder you are fed

> > up with

> > > " social crappy services " .

> > >

> > > Don't feel anyhow about just enjoying your girls for a little

> > while before

> > > the scram starts again. Cancelling everything for a few days

> > sounds great

> > > to me so you can just have a sense of normality. That is why my

> > favourite

> > > time is the summer holidays when we largely just have fun once the

> > > appointments are out of the way. And what about schools? I hope

> > you don't

> > > mean for Amelie? She is only one! We didn't request an

> > educational

> > > statement for until she was 18 months old and this was

> > only to beat

> > > the 2 year thing about parents requesting a statement before a

> > child is 2

> > > because we wanted to be in control of when she was statemented

> > rather than

> > > leave it to the professionals.

> > >

> > > Oh, by the way, not wanting to give you even more work, but it is

> > worth

> > > checking out if you believe in nurseries whether you Local

> > Authority will

> > > fund one for your little 3 year old (sorry can't remember her

> > name. I know

> > > it is not Olivia; that's one of the other ones. Ah, Fleur. She

> > is a child

> > > in need and I have known L.As fund even private nurseries for

> > children in

> > > need.

> > >

> > > On that note, before I get too carried away, you take good care of

> > you and

> > > get Darren to make some roasties and bring you a glass of red when

> > you get

> > > that well deserved soak.

> > >

> > > Cyberhugs............

> > > Flo

> > >

> > >

> > >

[Guest guest]

in fact hope they do one of my good friends from hosptial just died one of

my cfr ones its one of the\ose moemtbns where i wish the world wasnt so

harsh but it is xxxx love u

>

> LOL the hsopital vending machines can do dreadful stuff u should see mum

> but then she was getting fatter me being two years out of all hosptials and

> she was lie y im not going on hopsitla junk LOL and dad allways gorged on ti

> and he got high colesterol as a result so be careful with you hunger pangs

> in those logn hosptial stays lol godo oen on the ot glad they are wanting to

> check with the drs bet theyll say no to

>

>

> >

> > Thanks Flo

> >

> > All sound advice, It has been a great week, Amelie is sat in her

> > chair (hydraulic thing with a tray for her toys) and she is happy

> > and playful, and watching TV I think she is anyway she stares at it

> > a lot! Her head flops to oneside a lot, as if its too heavy for her

> > to hold up for long periods, but she is improving in my opinion.

> >

> > The OT adaptation woman has decided to put things on hold, when I

> > expressed my concerns of a lift..she said she wants to write to

> > Amelies Paed doctor and the neurologist!! about her prognosis... I

> > feel a 'get out' clause coming from these guys soon, especially

> > after Amelies christmas disaster, they probably dont want to chance

> > all that money, if she went down hill again!!! she said she will be

> > in touch once they have written back to her.

> >

> > Summer ...cant wait sitting in the garden, and no bugs!! hopefully

> > and red wine..as for the roasties I need to start my diet today its

> > becoming uncomfortable..you know when your body tells you enough..no

> > more please and I feel bloated..so a difficult week ahead for Darren

> > I am bound to get moody..from starvation!!

> >

> > love to you all

> > lol Lesley x

> >

> >

> >

> >

> >

> > >

> > > Lesley,

> > > Sooo pleased and here's to a prolonged period at home for all of

> > you. Enjoy

> > > those " little legs going " and the shaking head.

> > >

> > > On the flying me to Manchester bit, really you flatter me way more

> > than I

> > > have earned. I wish I could be of more help. It's always easier

> > to see

> > > through someone else's swamp (oh forgot to tell you one of my

> > practice

> > > supervisors when I was a student told me that when you are up to

> > your knees

> > > in crocodiles, it is hard to remember that the original intention

> > was to

> > > drain the swamp. Gues we are all here to remind you when the

> > going gets

> > > tough and those supposed to support you are driving you mad, the

> > swamp still

> > > needs draining so don't let the cocodiles get you, even if that

> > means

> > > stepping back from them for a bit. Hope all that makes sense.

> > You can see

> > > what they teach us in social work school! No wonder you are fed

> > up with

> > > " social crappy services " .

> > >

> > > Don't feel anyhow about just enjoying your girls for a little

> > while before

> > > the scram starts again. Cancelling everything for a few days

> > sounds great

> > > to me so you can just have a sense of normality. That is why my

> > favourite

> > > time is the summer holidays when we largely just have fun once the

> > > appointments are out of the way. And what about schools? I hope

> > you don't

> > > mean for Amelie? She is only one! We didn't request an

> > educational

> > > statement for until she was 18 months old and this was

> > only to beat

> > > the 2 year thing about parents requesting a statement before a

> > child is 2

> > > because we wanted to be in control of when she was statemented

> > rather than

> > > leave it to the professionals.

> > >

> > > Oh, by the way, not wanting to give you even more work, but it is

> > worth

> > > checking out if you believe in nurseries whether you Local

> > Authority will

> > > fund one for your little 3 year old (sorry can't remember her

> > name. I know

> > > it is not Olivia; that's one of the other ones. Ah, Fleur. She

> > is a child

> > > in need and I have known L.As fund even private nurseries for

> > children in

> > > need.

> > >

> > > On that note, before I get too carried away, you take good care of

> > you and

> > > get Darren to make some roasties and bring you a glass of red when

> > you get

> > > that well deserved soak.

> > >

> > > Cyberhugs............

> > > Flo

> > >

> > >

> > >

[Guest guest]

Hi Lesley,

Glad to hear they have seen sense and plan to consult some of your

professionsal before they decide what adaptations are needed to your house!

Perhaps common sense will prevail after all......hehehe!

So pleased to hear Amelie is playful and happy bet she is glad to be having

a little normality back at home with her family too!!

Hope you get some relaxation time in....

We had a surprise call from Great Ormond St this morning asking if we were

all ready for 's surgery on Monday.

(Errrr........what surgery???!!)

Hmmm. Apparantly the Surgeon had a space on his list and would like to fit

's change from PEG to button in on Monday but no one had thought to

tell us. I had to tell them that as 's parents also had JOB and LIVES

to lead sadly we couldn't drop everything to come for surgery at one days

notice. And also, we would like to TALK to someone regarding the surgery and

change of PEG first. " Oh, have you not had a clinic appointment?? " came

the reply....

NO!!

Crazy. Needless to say, We won't be going in on Monday as we quashed that

plan. And do they not realise that Mum needs time to psychologically prepare

for operations??!!

Speak soon

is

>

> Thanks Flo

>

> All sound advice, It has been a great week, Amelie is sat in her

> chair (hydraulic thing with a tray for her toys) and she is happy

> and playful, and watching TV I think she is anyway she stares at it

> a lot! Her head flops to oneside a lot, as if its too heavy for her

> to hold up for long periods, but she is improving in my opinion.

>

> The OT adaptation woman has decided to put things on hold, when I

> expressed my concerns of a lift..she said she wants to write to

> Amelies Paed doctor and the neurologist!! about her prognosis... I

> feel a 'get out' clause coming from these guys soon, especially

> after Amelies christmas disaster, they probably dont want to chance

> all that money, if she went down hill again!!! she said she will be

> in touch once they have written back to her.

>

> Summer ...cant wait sitting in the garden, and no bugs!! hopefully

> and red wine..as for the roasties I need to start my diet today its

> becoming uncomfortable..you know when your body tells you enough..no

> more please and I feel bloated..so a difficult week ahead for Darren

> I am bound to get moody..from starvation!!

>

> love to you all

> lol Lesley x

>

>

>

>

>

> >

> > Lesley,

> > Sooo pleased and here's to a prolonged period at home for all of

> you. Enjoy

> > those " little legs going " and the shaking head.

> >

> > On the flying me to Manchester bit, really you flatter me way more

> than I

> > have earned. I wish I could be of more help. It's always easier

> to see

> > through someone else's swamp (oh forgot to tell you one of my

> practice

> > supervisors when I was a student told me that when you are up to

> your knees

> > in crocodiles, it is hard to remember that the original intention

> was to

> > drain the swamp. Gues we are all here to remind you when the

> going gets

> > tough and those supposed to support you are driving you mad, the

> swamp still

> > needs draining so don't let the cocodiles get you, even if that

> means

> > stepping back from them for a bit. Hope all that makes sense.

> You can see

> > what they teach us in social work school! No wonder you are fed

> up with

> > " social crappy services " .

> >

> > Don't feel anyhow about just enjoying your girls for a little

> while before

> > the scram starts again. Cancelling everything for a few days

> sounds great

> > to me so you can just have a sense of normality. That is why my

> favourite

> > time is the summer holidays when we largely just have fun once the

> > appointments are out of the way. And what about schools? I hope

> you don't

> > mean for Amelie? She is only one! We didn't request an

> educational

> > statement for until she was 18 months old and this was

> only to beat

> > the 2 year thing about parents requesting a statement before a

> child is 2

> > because we wanted to be in control of when she was statemented

> rather than

> > leave it to the professionals.

> >

> > Oh, by the way, not wanting to give you even more work, but it is

> worth

> > checking out if you believe in nurseries whether you Local

> Authority will

> > fund one for your little 3 year old (sorry can't remember her

> name. I know

> > it is not Olivia; that's one of the other ones. Ah, Fleur. She

> is a child

> > in need and I have known L.As fund even private nurseries for

> children in

> > need.

> >

> > On that note, before I get too carried away, you take good care of

> you and

> > get Darren to make some roasties and bring you a glass of red when

> you get

> > that well deserved soak.

> >

> > Cyberhugs............

> > Flo

> >

> >

> >

[Guest guest]

Hmmm, is, we had the same thing from THE Great Ormond St Hospital

sometime before Xmas. 's cochlear implant, it was suggested, could

be rescheduled from March to October at pretty short notice. Obviously it

has not happened as we said no. They had not even noted that she needed

gromets before the implant could go ahead and these were not due to be

inserted until January; and anyway, what happened to the bit about Simon and

I meeting with the surgeon prior to surgery date?

Honestly, that hospital may have saved 's life 5 years ago but they

drive me totally insane. Work in partnership with parents? HA! " The child

first always " ? HA HA HA HA! Clearly parents are not part of the child

being first and always!

Gees, I feel better for that!

Hope things go smoothly for 's op and you survive GOSH without battle

scars.

Flo

>

> Hi Lesley,

>

> Glad to hear they have seen sense and plan to consult some of your

> professionsal before they decide what adaptations are needed to your

> house!

> Perhaps common sense will prevail after all......hehehe!

> So pleased to hear Amelie is playful and happy bet she is glad to be

> having

> a little normality back at home with her family too!!

>

> Hope you get some relaxation time in....

>

> We had a surprise call from Great Ormond St this morning asking if we were

> all ready for 's surgery on Monday.

> (Errrr........what surgery???!!)

> Hmmm. Apparantly the Surgeon had a space on his list and would like to fit

> 's change from PEG to button in on Monday but no one had thought to

> tell us. I had to tell them that as 's parents also had JOB and

> LIVES

> to lead sadly we couldn't drop everything to come for surgery at one days

> notice. And also, we would like to TALK to someone regarding the surgery

> and

> change of PEG first. " Oh, have you not had a clinic appointment?? " came

> the reply....

>

> NO!!

>

> Crazy. Needless to say, We won't be going in on Monday as we quashed that

> plan. And do they not realise that Mum needs time to psychologically

> prepare

> for operations??!!

>

> Speak soon

> is

>

>

> >

> > Thanks Flo

> >

> > All sound advice, It has been a great week, Amelie is sat in her

> > chair (hydraulic thing with a tray for her toys) and she is happy

> > and playful, and watching TV I think she is anyway she stares at it

> > a lot! Her head flops to oneside a lot, as if its too heavy for her

> > to hold up for long periods, but she is improving in my opinion.

> >

> > The OT adaptation woman has decided to put things on hold, when I

> > expressed my concerns of a lift..she said she wants to write to

> > Amelies Paed doctor and the neurologist!! about her prognosis... I

> > feel a 'get out' clause coming from these guys soon, especially

> > after Amelies christmas disaster, they probably dont want to chance

> > all that money, if she went down hill again!!! she said she will be

> > in touch once they have written back to her.

> >

> > Summer ...cant wait sitting in the garden, and no bugs!! hopefully

> > and red wine..as for the roasties I need to start my diet today its

> > becoming uncomfortable..you know when your body tells you enough..no

> > more please and I feel bloated..so a difficult week ahead for Darren

> > I am bound to get moody..from starvation!!

> >

> > love to you all

> > lol Lesley x

> >

> >

> >

> >

> >

> > >

> > > Lesley,

> > > Sooo pleased and here's to a prolonged period at home for all of

> > you. Enjoy

> > > those " little legs going " and the shaking head.

> > >

> > > On the flying me to Manchester bit, really you flatter me way more

> > than I

> > > have earned. I wish I could be of more help. It's always easier

> > to see

> > > through someone else's swamp (oh forgot to tell you one of my

> > practice

> > > supervisors when I was a student told me that when you are up to

> > your knees

> > > in crocodiles, it is hard to remember that the original intention

> > was to

> > > drain the swamp. Gues we are all here to remind you when the

> > going gets

> > > tough and those supposed to support you are driving you mad, the

> > swamp still

> > > needs draining so don't let the cocodiles get you, even if that

> > means

> > > stepping back from them for a bit. Hope all that makes sense.

> > You can see

> > > what they teach us in social work school! No wonder you are fed

> > up with

> > > " social crappy services " .

> > >

> > > Don't feel anyhow about just enjoying your girls for a little

> > while before

> > > the scram starts again. Cancelling everything for a few days

> > sounds great

> > > to me so you can just have a sense of normality. That is why my

> > favourite

> > > time is the summer holidays when we largely just have fun once the

> > > appointments are out of the way. And what about schools? I hope

> > you don't

> > > mean for Amelie? She is only one! We didn't request an

> > educational

> > > statement for until she was 18 months old and this was

> > only to beat

> > > the 2 year thing about parents requesting a statement before a

> > child is 2

> > > because we wanted to be in control of when she was statemented

> > rather than

> > > leave it to the professionals.

> > >

> > > Oh, by the way, not wanting to give you even more work, but it is

> > worth

> > > checking out if you believe in nurseries whether you Local

> > Authority will

> > > fund one for your little 3 year old (sorry can't remember her

> > name. I know

> > > it is not Olivia; that's one of the other ones. Ah, Fleur. She

> > is a child

> > > in need and I have known L.As fund even private nurseries for

> > children in

> > > need.

> > >

> > > On that note, before I get too carried away, you take good care of

> > you and

> > > get Darren to make some roasties and bring you a glass of red when

> > you get

> > > that well deserved soak.

> > >

> > > Cyberhugs............

> > > Flo

> > >

> > >

> > >

[Guest guest]

Hmmm, is, we had the same thing from THE Great Ormond St Hospital

sometime before Xmas. 's cochlear implant, it was suggested, could

be rescheduled from March to October at pretty short notice. Obviously it

has not happened as we said no. They had not even noted that she needed

gromets before the implant could go ahead and these were not due to be

inserted until January; and anyway, what happened to the bit about Simon and

I meeting with the surgeon prior to surgery date?

Honestly, that hospital may have saved 's life 5 years ago but they

drive me totally insane. Work in partnership with parents? HA! " The child

first always " ? HA HA HA HA! Clearly parents are not part of the child

being first and always!

Gees, I feel better for that!

Hope things go smoothly for 's op and you survive GOSH without battle

scars.

Flo

>

> Hi Lesley,

>

> Glad to hear they have seen sense and plan to consult some of your

> professionsal before they decide what adaptations are needed to your

> house!

> Perhaps common sense will prevail after all......hehehe!

> So pleased to hear Amelie is playful and happy bet she is glad to be

> having

> a little normality back at home with her family too!!

>

> Hope you get some relaxation time in....

>

> We had a surprise call from Great Ormond St this morning asking if we were

> all ready for 's surgery on Monday.

> (Errrr........what surgery???!!)

> Hmmm. Apparantly the Surgeon had a space on his list and would like to fit

> 's change from PEG to button in on Monday but no one had thought to

> tell us. I had to tell them that as 's parents also had JOB and

> LIVES

> to lead sadly we couldn't drop everything to come for surgery at one days

> notice. And also, we would like to TALK to someone regarding the surgery

> and

> change of PEG first. " Oh, have you not had a clinic appointment?? " came

> the reply....

>

> NO!!

>

> Crazy. Needless to say, We won't be going in on Monday as we quashed that

> plan. And do they not realise that Mum needs time to psychologically

> prepare

> for operations??!!

>

> Speak soon

> is

>

>

> >

> > Thanks Flo

> >

> > All sound advice, It has been a great week, Amelie is sat in her

> > chair (hydraulic thing with a tray for her toys) and she is happy

> > and playful, and watching TV I think she is anyway she stares at it

> > a lot! Her head flops to oneside a lot, as if its too heavy for her

> > to hold up for long periods, but she is improving in my opinion.

> >

> > The OT adaptation woman has decided to put things on hold, when I

> > expressed my concerns of a lift..she said she wants to write to

> > Amelies Paed doctor and the neurologist!! about her prognosis... I

> > feel a 'get out' clause coming from these guys soon, especially

> > after Amelies christmas disaster, they probably dont want to chance

> > all that money, if she went down hill again!!! she said she will be

> > in touch once they have written back to her.

> >

> > Summer ...cant wait sitting in the garden, and no bugs!! hopefully

> > and red wine..as for the roasties I need to start my diet today its

> > becoming uncomfortable..you know when your body tells you enough..no

> > more please and I feel bloated..so a difficult week ahead for Darren

> > I am bound to get moody..from starvation!!

> >

> > love to you all

> > lol Lesley x

> >

> >

> >

> >

> >

> > >

> > > Lesley,

> > > Sooo pleased and here's to a prolonged period at home for all of

> > you. Enjoy

> > > those " little legs going " and the shaking head.

> > >

> > > On the flying me to Manchester bit, really you flatter me way more

> > than I

> > > have earned. I wish I could be of more help. It's always easier

> > to see

> > > through someone else's swamp (oh forgot to tell you one of my

> > practice

> > > supervisors when I was a student told me that when you are up to

> > your knees

> > > in crocodiles, it is hard to remember that the original intention

> > was to

> > > drain the swamp. Gues we are all here to remind you when the

> > going gets

> > > tough and those supposed to support you are driving you mad, the

> > swamp still

> > > needs draining so don't let the cocodiles get you, even if that

> > means

> > > stepping back from them for a bit. Hope all that makes sense.

> > You can see

> > > what they teach us in social work school! No wonder you are fed

> > up with

> > > " social crappy services " .

> > >

> > > Don't feel anyhow about just enjoying your girls for a little

> > while before

> > > the scram starts again. Cancelling everything for a few days

> > sounds great

> > > to me so you can just have a sense of normality. That is why my

> > favourite

> > > time is the summer holidays when we largely just have fun once the

> > > appointments are out of the way. And what about schools? I hope

> > you don't

> > > mean for Amelie? She is only one! We didn't request an

> > educational

> > > statement for until she was 18 months old and this was

> > only to beat

> > > the 2 year thing about parents requesting a statement before a

> > child is 2

> > > because we wanted to be in control of when she was statemented

> > rather than

> > > leave it to the professionals.

> > >

> > > Oh, by the way, not wanting to give you even more work, but it is

> > worth

> > > checking out if you believe in nurseries whether you Local

> > Authority will

> > > fund one for your little 3 year old (sorry can't remember her

> > name. I know

> > > it is not Olivia; that's one of the other ones. Ah, Fleur. She

> > is a child

> > > in need and I have known L.As fund even private nurseries for

> > children in

> > > need.

> > >

> > > On that note, before I get too carried away, you take good care of

> > you and

> > > get Darren to make some roasties and bring you a glass of red when

> > you get

> > > that well deserved soak.

> > >

> > > Cyberhugs............

> > > Flo

> > >

> > >

> > >

[Guest guest]

Ellen-

I'm so sorry about the loss of your good friend. Hugs to you...

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Ellen-

I'm so sorry about the loss of your good friend. Hugs to you...

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

is

how crazy are they, total incompetence, mind you its either three

year waiting lists!!! or one day !!! what more can we ask for!!

The button will be fine, as i have said no complaints with Amelies.

lol Lesley x

> > >

> > > Lesley,

> > > Sooo pleased and here's to a prolonged period at home for all

of

> > you. Enjoy

> > > those " little legs going " and the shaking head.

> > >

> > > On the flying me to Manchester bit, really you flatter me way

more

> > than I

> > > have earned. I wish I could be of more help. It's always

easier

> > to see

> > > through someone else's swamp (oh forgot to tell you one of my

> > practice

> > > supervisors when I was a student told me that when you are up

to

> > your knees

> > > in crocodiles, it is hard to remember that the original

intention

> > was to

> > > drain the swamp. Gues we are all here to remind you when the

> > going gets

> > > tough and those supposed to support you are driving you mad,

the

> > swamp still

> > > needs draining so don't let the cocodiles get you, even if that

> > means

> > > stepping back from them for a bit. Hope all that makes sense.

> > You can see

> > > what they teach us in social work school! No wonder you are

fed

> > up with

> > > " social crappy services " .

> > >

> > > Don't feel anyhow about just enjoying your girls for a little

> > while before

> > > the scram starts again. Cancelling everything for a few days

> > sounds great

> > > to me so you can just have a sense of normality. That is why

my

> > favourite

> > > time is the summer holidays when we largely just have fun once

the

> > > appointments are out of the way. And what about schools? I

hope

> > you don't

> > > mean for Amelie? She is only one! We didn't request an

> > educational

> > > statement for until she was 18 months old and this was

> > only to beat

> > > the 2 year thing about parents requesting a statement before a

> > child is 2

> > > because we wanted to be in control of when she was statemented

> > rather than

> > > leave it to the professionals.

> > >

> > > Oh, by the way, not wanting to give you even more work, but it

is

> > worth

> > > checking out if you believe in nurseries whether you Local

> > Authority will

> > > fund one for your little 3 year old (sorry can't remember her

> > name. I know

> > > it is not Olivia; that's one of the other ones. Ah, Fleur.

She

> > is a child

> > > in need and I have known L.As fund even private nurseries for

> > children in

> > > need.

> > >

> > > On that note, before I get too carried away, you take good

care of

> > you and

> > > get Darren to make some roasties and bring you a glass of red

when

> > you get

> > > that well deserved soak.

> > >

> > > Cyberhugs............

> > > Flo

> > >

> > >

> > >

[Guest guest]

Lesley,

I am so glad your little sweety is home!! Hang in there hun it will

all get better before you know it. In a few years you will look back

and think WOW I GOT THREW THAT!!!

Hugs to you and Amelies!!

Crystal and Eva (10 month Charger)

>

> I'm taking bets on how long!!!

>

> seriously she is well and lovely to be home, she gets so excited

> when we come into the room she plays in almost as if she knows

shes

> home, her little legs going mad and shaking her head.lovely sight.

>

> Thanks for all the support with the lift and hypotonia, she is

> bringing a man along in beginning March, so we shall see what

> happens next.

>

> I wish I could fly flo to Manchester everytime I am having a saga,

> she could sort everyone out for me!

> I am tired of discussion, and i have started cancelling

> appointments, you know when you cant be bothered, it all starts to

> drive you mad.

> But i know its not going away, so i need to get cracking with

> Schools the social crappy services and the vision team, its just

> hard to get motivated coz I think whats the point we will be back

in

> shortly then i have to cancel everyone again!

>

> Bye for now

>

> love to Ellen

>

> Lesley x

>

[Guest guest]

wat one days notice who had talked to you no one they should at least talk

to you then plan surgery thats wat we do out here LOL

>

> Lesley,

>

> I am so glad your little sweety is home!! Hang in there hun it will

> all get better before you know it. In a few years you will look back

> and think WOW I GOT THREW THAT!!!

> Hugs to you and Amelies!!

>

> Crystal and Eva (10 month Charger)

>

>

>

>

>

>

> >

> > I'm taking bets on how long!!!

> >

> > seriously she is well and lovely to be home, she gets so excited

> > when we come into the room she plays in almost as if she knows

> shes

> > home, her little legs going mad and shaking her head.lovely sight.

> >

> > Thanks for all the support with the lift and hypotonia, she is

> > bringing a man along in beginning March, so we shall see what

> > happens next.

> >

> > I wish I could fly flo to Manchester everytime I am having a saga,

> > she could sort everyone out for me!

> > I am tired of discussion, and i have started cancelling

> > appointments, you know when you cant be bothered, it all starts to

> > drive you mad.

> > But i know its not going away, so i need to get cracking with

> > Schools the social crappy services and the vision team, its just

> > hard to get motivated coz I think whats the point we will be back

> in

> > shortly then i have to cancel everyone again!

> >

> > Bye for now

> >

> > love to Ellen

> >

> > Lesley x

> >

>

>

>

>

>

>

>

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>

> 8th International

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> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley,

I still get the feeling that your OT thinks that Amelies' prognosis is not

very good - make sure she gets the NEW neurologist report!

Also to say that I loved Dylan's OT who was also his feeding specialist - I

still am in contact with her. When he was about 2 and was crawling,

interacting, and so on she shared that when she first met us when Dylan was

9 days old and watched his uncoordinated suck, swallow, breath and then all

his other little " neuro quirks " she did not think the outcome for him would

be good at all. It is because in the other kids she saw those neuro signs

were indicators of brain damage. In CHARGE - most times - the brain itself

is not damaged, it is the wiring that is faulty and the body figures out a

new way. If your OT does not have direct experience with CHARGE she may not

know the enormity of potential there is to rise up above all those early

indicators of " poor outcome " . Marsha was wise not to share those early

fears with me, because all I saw was his potential! Later she was able to

share the awe of his progress with me.

Kim

> Thanks Flo

>

> All sound advice, It has been a great week, Amelie is sat in her

> chair (hydraulic thing with a tray for her toys) and she is happy

> and playful, and watching TV I think she is anyway she stares at it

> a lot! Her head flops to oneside a lot, as if its too heavy for her

> to hold up for long periods, but she is improving in my opinion.

>

> The OT adaptation woman has decided to put things on hold, when I

> expressed my concerns of a lift..she said she wants to write to

> Amelies Paed doctor and the neurologist!! about her prognosis... I

> feel a 'get out' clause coming from these guys soon, especially

> after Amelies christmas disaster, they probably dont want to chance

> all that money, if she went down hill again!!! she said she will be

> in touch once they have written back to her.

>

> Summer ...cant wait sitting in the garden, and no bugs!! hopefully

> and red wine..as for the roasties I need to start my diet today its

> becoming uncomfortable..you know when your body tells you enough..no

> more please and I feel bloated..so a difficult week ahead for Darren

> I am bound to get moody..from starvation!!

>

> love to you all

> lol Lesley x

>

>

>

>

>

>>

>> Lesley,

>> Sooo pleased and here's to a prolonged period at home for all of

> you. Enjoy

>> those " little legs going " and the shaking head.

>>

>> On the flying me to Manchester bit, really you flatter me way more

> than I

>> have earned. I wish I could be of more help. It's always easier

> to see

>> through someone else's swamp (oh forgot to tell you one of my

> practice

>> supervisors when I was a student told me that when you are up to

> your knees

>> in crocodiles, it is hard to remember that the original intention

> was to

>> drain the swamp. Gues we are all here to remind you when the

> going gets

>> tough and those supposed to support you are driving you mad, the

> swamp still

>> needs draining so don't let the cocodiles get you, even if that

> means

>> stepping back from them for a bit. Hope all that makes sense.

> You can see

>> what they teach us in social work school! No wonder you are fed

> up with

>> " social crappy services " .

>>

>> Don't feel anyhow about just enjoying your girls for a little

> while before

>> the scram starts again. Cancelling everything for a few days

> sounds great

>> to me so you can just have a sense of normality. That is why my

> favourite

>> time is the summer holidays when we largely just have fun once the

>> appointments are out of the way. And what about schools? I hope

> you don't

>> mean for Amelie? She is only one! We didn't request an

> educational

>> statement for until she was 18 months old and this was

> only to beat

>> the 2 year thing about parents requesting a statement before a

> child is 2

>> because we wanted to be in control of when she was statemented

> rather than

>> leave it to the professionals.

>>

>> Oh, by the way, not wanting to give you even more work, but it is

> worth

>> checking out if you believe in nurseries whether you Local

> Authority will

>> fund one for your little 3 year old (sorry can't remember her

> name. I know

>> it is not Olivia; that's one of the other ones. Ah, Fleur. She

> is a child

>> in need and I have known L.As fund even private nurseries for

> children in

>> need.

>>

>> On that note, before I get too carried away, you take good care of

> you and

>> get Darren to make some roasties and bring you a glass of red when

> you get

>> that well deserved soak.

>>

>> Cyberhugs............

>> Flo

>>

>>

>>

[Guest guest]

I think to a surgeon, going in for such a simple " op " is no worse than going

in to the office for a visit - they truly do not know that for us it is much

bigger than that. I still recall all these years later a surgeon friend

telling me when I was in nursing school that there was no such thing as a

simple operation - if it required GA, it was always complex. I think most

of our docs forget that our kids have CHARGE and it is even more complex

than for others. We need to prepare! Good for you for taking the time you

need!

Kim

> Hi Lesley,

>

> Glad to hear they have seen sense and plan to consult some of your

> professionsal before they decide what adaptations are needed to your house!

> Perhaps common sense will prevail after all......hehehe!

> So pleased to hear Amelie is playful and happy bet she is glad to be having

> a little normality back at home with her family too!!

>

> Hope you get some relaxation time in....

>

> We had a surprise call from Great Ormond St this morning asking if we were

> all ready for 's surgery on Monday.

> (Errrr........what surgery???!!)

> Hmmm. Apparantly the Surgeon had a space on his list and would like to fit

> 's change from PEG to button in on Monday but no one had thought to

> tell us. I had to tell them that as 's parents also had JOB and LIVES

> to lead sadly we couldn't drop everything to come for surgery at one days

> notice. And also, we would like to TALK to someone regarding the surgery and

> change of PEG first. " Oh, have you not had a clinic appointment?? " came

> the reply....

>

> NO!!

>

> Crazy. Needless to say, We won't be going in on Monday as we quashed that

> plan. And do they not realise that Mum needs time to psychologically prepare

> for operations??!!

>

> Speak soon

> is

>

>

>>

>> Thanks Flo

>>

>> All sound advice, It has been a great week, Amelie is sat in her

>> chair (hydraulic thing with a tray for her toys) and she is happy

>> and playful, and watching TV I think she is anyway she stares at it

>> a lot! Her head flops to oneside a lot, as if its too heavy for her

>> to hold up for long periods, but she is improving in my opinion.

>>

>> The OT adaptation woman has decided to put things on hold, when I

>> expressed my concerns of a lift..she said she wants to write to

>> Amelies Paed doctor and the neurologist!! about her prognosis... I

>> feel a 'get out' clause coming from these guys soon, especially

>> after Amelies christmas disaster, they probably dont want to chance

>> all that money, if she went down hill again!!! she said she will be

>> in touch once they have written back to her.

>>

>> Summer ...cant wait sitting in the garden, and no bugs!! hopefully

>> and red wine..as for the roasties I need to start my diet today its

>> becoming uncomfortable..you know when your body tells you enough..no

>> more please and I feel bloated..so a difficult week ahead for Darren

>> I am bound to get moody..from starvation!!

>>

>> love to you all

>> lol Lesley x

>>

>>

>>

>>

>>

>>>

>>> Lesley,

>>> Sooo pleased and here's to a prolonged period at home for all of

>> you. Enjoy

>>> those " little legs going " and the shaking head.

>>>

>>> On the flying me to Manchester bit, really you flatter me way more

>> than I

>>> have earned. I wish I could be of more help. It's always easier

>> to see

>>> through someone else's swamp (oh forgot to tell you one of my

>> practice

>>> supervisors when I was a student told me that when you are up to

>> your knees

>>> in crocodiles, it is hard to remember that the original intention

>> was to

>>> drain the swamp. Gues we are all here to remind you when the

>> going gets

>>> tough and those supposed to support you are driving you mad, the

>> swamp still

>>> needs draining so don't let the cocodiles get you, even if that

>> means

>>> stepping back from them for a bit. Hope all that makes sense.

>> You can see

>>> what they teach us in social work school! No wonder you are fed

>> up with

>>> " social crappy services " .

>>>

>>> Don't feel anyhow about just enjoying your girls for a little

>> while before

>>> the scram starts again. Cancelling everything for a few days

>> sounds great

>>> to me so you can just have a sense of normality. That is why my

>> favourite

>>> time is the summer holidays when we largely just have fun once the

>>> appointments are out of the way. And what about schools? I hope

>> you don't

>>> mean for Amelie? She is only one! We didn't request an

>> educational

>>> statement for until she was 18 months old and this was

>> only to beat

>>> the 2 year thing about parents requesting a statement before a

>> child is 2

>>> because we wanted to be in control of when she was statemented

>> rather than

>>> leave it to the professionals.

>>>

>>> Oh, by the way, not wanting to give you even more work, but it is

>> worth

>>> checking out if you believe in nurseries whether you Local

>> Authority will

>>> fund one for your little 3 year old (sorry can't remember her

>> name. I know

>>> it is not Olivia; that's one of the other ones. Ah, Fleur. She

>> is a child

>>> in need and I have known L.As fund even private nurseries for

>> children in

>>> need.

>>>

>>> On that note, before I get too carried away, you take good care of

>> you and

>>> get Darren to make some roasties and bring you a glass of red when

>> you get

>>> that well deserved soak.

>>>

>>> Cyberhugs............

>>> Flo

>>>

>>>

>>>

[Guest guest]

Kim said: " It is because in the other kids she saw those neuro signs

were indicators of brain damage. In CHARGE - most times - the brain itself

is not damaged, it is the wiring that is faulty and the body figures out a

new way. "

Kim-

This was perfectly worded for me right now. I need to share this with

Aubrie's team. Now I can think more clearly about what is going on with her

and how it can be possible to make positive changes. Thanks!! You have a

way of saying just what I need when I need it!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Kim said: " It is because in the other kids she saw those neuro signs

were indicators of brain damage. In CHARGE - most times - the brain itself

is not damaged, it is the wiring that is faulty and the body figures out a

new way. "

Kim-

This was perfectly worded for me right now. I need to share this with

Aubrie's team. Now I can think more clearly about what is going on with her

and how it can be possible to make positive changes. Thanks!! You have a

way of saying just what I need when I need it!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Kim said: " It is because in the other kids she saw those neuro signs

were indicators of brain damage. In CHARGE - most times - the brain itself

is not damaged, it is the wiring that is faulty and the body figures out a

new way. "

Kim-

This was perfectly worded for me right now. I need to share this with

Aubrie's team. Now I can think more clearly about what is going on with her

and how it can be possible to make positive changes. Thanks!! You have a

way of saying just what I need when I need it!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ