Hi all etc

[Guest guest]

Hello everyone. Those of you who know me knew my respite from the group

would never last really! Curiosity overcame me yesterday and I decided to

peep in to find out what is going on in CHARGEland that Simon is not telling

me about, which is a little neurotic when he gives me regular feedback.

Have missed reading and chatting. Just not the same talking to people who

have not walked in your shoes really. Also wanted to know how the little

ones (and the big ones) are all getting along.

Soooo, seems there are a whole load of names I don't recognise and I have

only been away for 3-1/2 months, so WELCOME to all the new members and know

that you will get lots of support, information and expertise here. I

certainly have over the last 4 years.

Have only read today's mail so still not quite up to speed but to all those

whose children are hospitalised, (only really know of JD right now), hope

things are getting easier for them and their recovery is speedy; to those

who have just been discharged, congrats and welcome to the next chapter. It

is scary as hell I know but it does settle and you do become experts at

doing the seemingly impossible. Hang in there, you have lots of role models

here.

And to all those who have avoided hospitalisations (Amelie Chan you star,

that means you among others), enjoy the pleasure of your families being

together and relaxing and enjoying each other.

Our household is as busy as ever. The girls have just had their respective

Xmas plays and they brought us great joy in their own different ways (

from MA, you would have cracked up to see Elly's antics on the stage. My

favourite was sliding her tinsel " halo " over her eyes and standing singing

her little heart out with eyes covered up looking like that android from the

Star Trek spinoff and then looking very pleased with herself when a teacher

put the halo back on her head. And everyone wondered why I was driven to

write a sparkly " Angel " on her outfit - just so it was clear to everyone).

And ? Last year, she was the best 'flower' ever, this year she was

the best 'munchkin' ever! She was a real active participant on the stage

for the first time. They were doing the wizard of oz and she did her job

polishing up the tin man brilliantly. OK, her obsessive polishing meant he

would probably have dazzled us all, but she was brilliant. I was sooooo

proud. Roll on next year.

Jess is not doing too badly either but am sure would do so much better if

only we could sort out her sleep. Quality of life and learning have not

been the best this term, with the now moved to chronically disturbed sleep.

Thanks to various office moves etc, the referral to the nueropsych never

happened, so now the developmental paed we spoke to in the first place is

going to attempt to address the sleep issues. She is due to start her

melatonin course very shortly. I am not convinced as her issues are not

falling asleep but not staying asleep or not returning to sleep if she wakes

up in the night, but the doc tells us that melatonin is known to work for

this too. Hmmm, we will see. Most of you guys have said different. Also

fresh from her having had another fit last week, a little (but not too much)

anxious about the potential prospects of melatonin increasing incidence of

fits. Again, we will see. More than anything though, I look forward to our

getting our really happy little girl back. Understandably, she has been a

real grump and just about going to school, home and bed - not really good

quality of life. Tonight, she was brilliant and really reminded me what a

total pleasure she can be when she has enough sleep. The first time in a

long time she has had two consecutive nights' sleep. Loved getting her

ready for bed. No howling, no kicking, no rocking while I tried to comb her

hair......wonderful! And we even fitted in a story (a real novelty these

days as she is so tired she just starts crying if we start one) and we had a

really nice long bedtime cuddle! Aaaaahhhh..........

Me, I am an overworked wreck. It was probably a bad move to start my course

at time when one daughter was just starting school and the other has chronic

sleep disturbance. Enjoying the new challenges, but they are a challenge

too many and I have become a disorganised chaotic and even more grey woman.

Really looking forward to the next 2 weeks when my student is on leave. My

job is very demanding right now so having a student as well is not good for

my sanity even if good for my professional and personal development. Roll

on July when it will be over.

Poor old Simon is surviving well under the strain. It is a household

dominated by irritable women - Elly because it is end of term and she is

tired, for obvious reasons, me - well you know I look for any excuse

to give him grief.

On that note, it has been lovely to have a little peep and catch-up. Will

be on and off for a while. Everyone take great care of yourselves and give

yourselves (and each other) big hugs. And now looking at this epic, I

remember why I could not keep up with being on the list! I could never say

anything in brief, could I? And yikes!!! Look at the time! I'm off to

bed!

--

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Welcome back Flo, sounds like you have been busy and I hope things

stay well for you and the family. The Christmas show your kids did

sounds like it was great.

Hope you are around more offen!!

Hugs,

Crystal mom to (10), (3), and Eva (20 month old CHARGEr)

wife to Dan in Illinois

>

> Hello everyone. Those of you who know me knew my respite from the

group

> would never last really! Curiosity overcame me yesterday and I

decided to

> peep in to find out what is going on in CHARGEland that Simon is

not telling

> me about, which is a little neurotic when he gives me regular

feedback.

>

> Have missed reading and chatting. Just not the same talking to

people who

> have not walked in your shoes really. Also wanted to know how the

little

> ones (and the big ones) are all getting along.

>

> Soooo, seems there are a whole load of names I don't recognise and

I have

> only been away for 3-1/2 months, so WELCOME to all the new members

and know

> that you will get lots of support, information and expertise

here. I

> certainly have over the last 4 years.

>

> Have only read today's mail so still not quite up to speed but to

all those

> whose children are hospitalised, (only really know of JD right

now), hope

> things are getting easier for them and their recovery is speedy;

to those

> who have just been discharged, congrats and welcome to the next

chapter. It

> is scary as hell I know but it does settle and you do become

experts at

> doing the seemingly impossible. Hang in there, you have lots of

role models

> here.

>

> And to all those who have avoided hospitalisations (Amelie Chan

you star,

> that means you among others), enjoy the pleasure of your families

being

> together and relaxing and enjoying each other.

>

> Our household is as busy as ever. The girls have just had their

respective

> Xmas plays and they brought us great joy in their own different

ways (

> from MA, you would have cracked up to see Elly's antics on the

stage. My

> favourite was sliding her tinsel " halo " over her eyes and standing

singing

> her little heart out with eyes covered up looking like that

android from the

> Star Trek spinoff and then looking very pleased with herself when

a teacher

> put the halo back on her head. And everyone wondered why I was

driven to

> write a sparkly " Angel " on her outfit - just so it was clear to

everyone).

>

> And ? Last year, she was the best 'flower' ever, this year

she was

> the best 'munchkin' ever! She was a real active participant on

the stage

> for the first time. They were doing the wizard of oz and she did

her job

> polishing up the tin man brilliantly. OK, her obsessive polishing

meant he

> would probably have dazzled us all, but she was brilliant. I was

sooooo

> proud. Roll on next year.

>

> Jess is not doing too badly either but am sure would do so much

better if

> only we could sort out her sleep. Quality of life and learning

have not

> been the best this term, with the now moved to chronically

disturbed sleep.

> Thanks to various office moves etc, the referral to the nueropsych

never

> happened, so now the developmental paed we spoke to in the first

place is

> going to attempt to address the sleep issues. She is due to start

her

> melatonin course very shortly. I am not convinced as her issues

are not

> falling asleep but not staying asleep or not returning to sleep if

she wakes

> up in the night, but the doc tells us that melatonin is known to

work for

> this too. Hmmm, we will see. Most of you guys have said

different. Also

> fresh from her having had another fit last week, a little (but not

too much)

> anxious about the potential prospects of melatonin increasing

incidence of

> fits. Again, we will see. More than anything though, I look

forward to our

> getting our really happy little girl back. Understandably, she

has been a

> real grump and just about going to school, home and bed - not

really good

> quality of life. Tonight, she was brilliant and really reminded

me what a

> total pleasure she can be when she has enough sleep. The first

time in a

> long time she has had two consecutive nights' sleep. Loved

getting her

> ready for bed. No howling, no kicking, no rocking while I tried

to comb her

> hair......wonderful! And we even fitted in a story (a real

novelty these

> days as she is so tired she just starts crying if we start one)

and we had a

> really nice long bedtime cuddle! Aaaaahhhh..........

>

> Me, I am an overworked wreck. It was probably a bad move to start

my course

> at time when one daughter was just starting school and the other

has chronic

> sleep disturbance. Enjoying the new challenges, but they are a

challenge

> too many and I have become a disorganised chaotic and even more

grey woman.

> Really looking forward to the next 2 weeks when my student is on

leave. My

> job is very demanding right now so having a student as well is not

good for

> my sanity even if good for my professional and personal

development. Roll

> on July when it will be over.

>

> Poor old Simon is surviving well under the strain. It is a

household

> dominated by irritable women - Elly because it is end of term and

she is

> tired, for obvious reasons, me - well you know I look for

any excuse

> to give him grief.

>

> On that note, it has been lovely to have a little peep and catch-

up. Will

> be on and off for a while. Everyone take great care of yourselves

and give

> yourselves (and each other) big hugs. And now looking at this

epic, I

> remember why I could not keep up with being on the list! I could

never say

> anything in brief, could I? And yikes!!! Look at the time! I'm

off to

> bed!

>

> --

> Flo (UK)

> Mum to - CHARGE - (6) and Elly (4)

>

>

>

[Guest guest]

hey xxxxxxxxxxxxxxxxxxx simon tell u bout jeujonostomy removal feb actualy

gotr the admision letter today!!!!!!!!!!!!!!!1

>

> Welcome back Flo, sounds like you have been busy and I hope things

> stay well for you and the family. The Christmas show your kids did

> sounds like it was great.

> Hope you are around more offen!!

> Hugs,

> Crystal mom to (10), (3), and Eva (20 month old CHARGEr)

> wife to Dan in Illinois

>

>

> >

> > Hello everyone. Those of you who know me knew my respite from the

> group

> > would never last really! Curiosity overcame me yesterday and I

> decided to

> > peep in to find out what is going on in CHARGEland that Simon is

> not telling

> > me about, which is a little neurotic when he gives me regular

> feedback.

> >

> > Have missed reading and chatting. Just not the same talking to

> people who

> > have not walked in your shoes really. Also wanted to know how the

> little

> > ones (and the big ones) are all getting along.

> >

> > Soooo, seems there are a whole load of names I don't recognise and

> I have

> > only been away for 3-1/2 months, so WELCOME to all the new members

> and know

> > that you will get lots of support, information and expertise

> here. I

> > certainly have over the last 4 years.

> >

> > Have only read today's mail so still not quite up to speed but to

> all those

> > whose children are hospitalised, (only really know of JD right

> now), hope

> > things are getting easier for them and their recovery is speedy;

> to those

> > who have just been discharged, congrats and welcome to the next

> chapter. It

> > is scary as hell I know but it does settle and you do become

> experts at

> > doing the seemingly impossible. Hang in there, you have lots of

> role models

> > here.

> >

> > And to all those who have avoided hospitalisations (Amelie Chan

> you star,

> > that means you among others), enjoy the pleasure of your families

> being

> > together and relaxing and enjoying each other.

> >

> > Our household is as busy as ever. The girls have just had their

> respective

> > Xmas plays and they brought us great joy in their own different

> ways (

> > from MA, you would have cracked up to see Elly's antics on the

> stage. My

> > favourite was sliding her tinsel " halo " over her eyes and standing

> singing

> > her little heart out with eyes covered up looking like that

> android from the

> > Star Trek spinoff and then looking very pleased with herself when

> a teacher

> > put the halo back on her head. And everyone wondered why I was

> driven to

> > write a sparkly " Angel " on her outfit - just so it was clear to

> everyone).

> >

> > And ? Last year, she was the best 'flower' ever, this year

> she was

> > the best 'munchkin' ever! She was a real active participant on

> the stage

> > for the first time. They were doing the wizard of oz and she did

> her job

> > polishing up the tin man brilliantly. OK, her obsessive polishing

> meant he

> > would probably have dazzled us all, but she was brilliant. I was

> sooooo

> > proud. Roll on next year.

> >

> > Jess is not doing too badly either but am sure would do so much

> better if

> > only we could sort out her sleep. Quality of life and learning

> have not

> > been the best this term, with the now moved to chronically

> disturbed sleep.

> > Thanks to various office moves etc, the referral to the nueropsych

> never

> > happened, so now the developmental paed we spoke to in the first

> place is

> > going to attempt to address the sleep issues. She is due to start

> her

> > melatonin course very shortly. I am not convinced as her issues

> are not

> > falling asleep but not staying asleep or not returning to sleep if

> she wakes

> > up in the night, but the doc tells us that melatonin is known to

> work for

> > this too. Hmmm, we will see. Most of you guys have said

> different. Also

> > fresh from her having had another fit last week, a little (but not

> too much)

> > anxious about the potential prospects of melatonin increasing

> incidence of

> > fits. Again, we will see. More than anything though, I look

> forward to our

> > getting our really happy little girl back. Understandably, she

> has been a

> > real grump and just about going to school, home and bed - not

> really good

> > quality of life. Tonight, she was brilliant and really reminded

> me what a

> > total pleasure she can be when she has enough sleep. The first

> time in a

> > long time she has had two consecutive nights' sleep. Loved

> getting her

> > ready for bed. No howling, no kicking, no rocking while I tried

> to comb her

> > hair......wonderful! And we even fitted in a story (a real

> novelty these

> > days as she is so tired she just starts crying if we start one)

> and we had a

> > really nice long bedtime cuddle! Aaaaahhhh..........

> >

> > Me, I am an overworked wreck. It was probably a bad move to start

> my course

> > at time when one daughter was just starting school and the other

> has chronic

> > sleep disturbance. Enjoying the new challenges, but they are a

> challenge

> > too many and I have become a disorganised chaotic and even more

> grey woman.

> > Really looking forward to the next 2 weeks when my student is on

> leave. My

> > job is very demanding right now so having a student as well is not

> good for

> > my sanity even if good for my professional and personal

> development. Roll

> > on July when it will be over.

> >

> > Poor old Simon is surviving well under the strain. It is a

> household

> > dominated by irritable women - Elly because it is end of term and

> she is

> > tired, for obvious reasons, me - well you know I look for

> any excuse

> > to give him grief.

> >

> > On that note, it has been lovely to have a little peep and catch-

> up. Will

> > be on and off for a while. Everyone take great care of yourselves

> and give

> > yourselves (and each other) big hugs. And now looking at this

> epic, I

> > remember why I could not keep up with being on the list! I could

> never say

> > anything in brief, could I? And yikes!!! Look at the time! I'm

> off to

> > bed!

> >

> > --

> > Flo (UK)

> > Mum to - CHARGE - (6) and Elly (4)

> >

> >

> >

[Guest guest]

It is great to hear from you! Thanks for the update!

Lori Myers

Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of

12/22/04!, and Emma (4).

Dallas, Texas

Hi all etc

Hello everyone. Those of you who know me knew my respite from the group

would never last really! Curiosity overcame me yesterday and I decided to

peep in to find out what is going on in CHARGEland that Simon is not telling

me about, which is a little neurotic when he gives me regular feedback.

Have missed reading and chatting. Just not the same talking to people who

have not walked in your shoes really. Also wanted to know how the little

ones (and the big ones) are all getting along.

Soooo, seems there are a whole load of names I don't recognise and I have

only been away for 3-1/2 months, so WELCOME to all the new members and know

that you will get lots of support, information and expertise here. I

certainly have over the last 4 years.

Have only read today's mail so still not quite up to speed but to all those

whose children are hospitalised, (only really know of JD right now), hope

things are getting easier for them and their recovery is speedy; to those

who have just been discharged, congrats and welcome to the next chapter. It

is scary as hell I know but it does settle and you do become experts at

doing the seemingly impossible. Hang in there, you have lots of role models

here.

And to all those who have avoided hospitalisations (Amelie Chan you star,

that means you among others), enjoy the pleasure of your families being

together and relaxing and enjoying each other.

Our household is as busy as ever. The girls have just had their respective

Xmas plays and they brought us great joy in their own different ways (

from MA, you would have cracked up to see Elly's antics on the stage. My

favourite was sliding her tinsel " halo " over her eyes and standing singing

her little heart out with eyes covered up looking like that android from the

Star Trek spinoff and then looking very pleased with herself when a teacher

put the halo back on her head. And everyone wondered why I was driven to

write a sparkly " Angel " on her outfit - just so it was clear to everyone).

And ? Last year, she was the best 'flower' ever, this year she was

the best 'munchkin' ever! She was a real active participant on the stage

for the first time. They were doing the wizard of oz and she did her job

polishing up the tin man brilliantly. OK, her obsessive polishing meant he

would probably have dazzled us all, but she was brilliant. I was sooooo

proud. Roll on next year.

Jess is not doing too badly either but am sure would do so much better if

only we could sort out her sleep. Quality of life and learning have not

been the best this term, with the now moved to chronically disturbed sleep.

Thanks to various office moves etc, the referral to the nueropsych never

happened, so now the developmental paed we spoke to in the first place is

going to attempt to address the sleep issues. She is due to start her

melatonin course very shortly. I am not convinced as her issues are not

falling asleep but not staying asleep or not returning to sleep if she wakes

up in the night, but the doc tells us that melatonin is known to work for

this too. Hmmm, we will see. Most of you guys have said different. Also

fresh from her having had another fit last week, a little (but not too much)

anxious about the potential prospects of melatonin increasing incidence of

fits. Again, we will see. More than anything though, I look forward to our

getting our really happy little girl back. Understandably, she has been a

real grump and just about going to school, home and bed - not really good

quality of life. Tonight, she was brilliant and really reminded me what a

total pleasure she can be when she has enough sleep. The first time in a

long time she has had two consecutive nights' sleep. Loved getting her

ready for bed. No howling, no kicking, no rocking while I tried to comb her

hair......wonderful! And we even fitted in a story (a real novelty these

days as she is so tired she just starts crying if we start one) and we had a

really nice long bedtime cuddle! Aaaaahhhh..........

Me, I am an overworked wreck. It was probably a bad move to start my course

at time when one daughter was just starting school and the other has chronic

sleep disturbance. Enjoying the new challenges, but they are a challenge

too many and I have become a disorganised chaotic and even more grey woman.

Really looking forward to the next 2 weeks when my student is on leave. My

job is very demanding right now so having a student as well is not good for

my sanity even if good for my professional and personal development. Roll

on July when it will be over.

Poor old Simon is surviving well under the strain. It is a household

dominated by irritable women - Elly because it is end of term and she is

tired, for obvious reasons, me - well you know I look for any excuse

to give him grief.

On that note, it has been lovely to have a little peep and catch-up. Will

be on and off for a while. Everyone take great care of yourselves and give

yourselves (and each other) big hugs. And now looking at this epic, I

remember why I could not keep up with being on the list! I could never say

anything in brief, could I? And yikes!!! Look at the time! I'm off to

bed!

--

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Flo,

How wonderful to have you even for only a moment!!!

You sound like yourself and that is a fun thing!!

Best and Happy Holidays.

pam

Hi all etc

Hello everyone. Those of you who know me knew my respite from the group

would never last really! Curiosity overcame me yesterday and I decided to

peep in to find out what is going on in CHARGEland that Simon is not telling

me about, which is a little neurotic when he gives me regular feedback.

Have missed reading and chatting. Just not the same talking to people who

have not walked in your shoes really. Also wanted to know how the little

ones (and the big ones) are all getting along.

Soooo, seems there are a whole load of names I don't recognise and I have

only been away for 3-1/2 months, so WELCOME to all the new members and know

that you will get lots of support, information and expertise here. I

certainly have over the last 4 years.

Have only read today's mail so still not quite up to speed but to all those

whose children are hospitalised, (only really know of JD right now), hope

things are getting easier for them and their recovery is speedy; to those

who have just been discharged, congrats and welcome to the next chapter. It

is scary as hell I know but it does settle and you do become experts at

doing the seemingly impossible. Hang in there, you have lots of role models

here.

And to all those who have avoided hospitalisations (Amelie Chan you star,

that means you among others), enjoy the pleasure of your families being

together and relaxing and enjoying each other.

Our household is as busy as ever. The girls have just had their respective

Xmas plays and they brought us great joy in their own different ways (

from MA, you would have cracked up to see Elly's antics on the stage. My

favourite was sliding her tinsel " halo " over her eyes and standing singing

her little heart out with eyes covered up looking like that android from the

Star Trek spinoff and then looking very pleased with herself when a teacher

put the halo back on her head. And everyone wondered why I was driven to

write a sparkly " Angel " on her outfit - just so it was clear to everyone).

And ? Last year, she was the best 'flower' ever, this year she was

the best 'munchkin' ever! She was a real active participant on the stage

for the first time. They were doing the wizard of oz and she did her job

polishing up the tin man brilliantly. OK, her obsessive polishing meant he

would probably have dazzled us all, but she was brilliant. I was sooooo

proud. Roll on next year.

Jess is not doing too badly either but am sure would do so much better if

only we could sort out her sleep. Quality of life and learning have not

been the best this term, with the now moved to chronically disturbed sleep.

Thanks to various office moves etc, the referral to the nueropsych never

happened, so now the developmental paed we spoke to in the first place is

going to attempt to address the sleep issues. She is due to start her

melatonin course very shortly. I am not convinced as her issues are not

falling asleep but not staying asleep or not returning to sleep if she wakes

up in the night, but the doc tells us that melatonin is known to work for

this too. Hmmm, we will see. Most of you guys have said different. Also

fresh from her having had another fit last week, a little (but not too much)

anxious about the potential prospects of melatonin increasing incidence of

fits. Again, we will see. More than anything though, I look forward to our

getting our really happy little girl back. Understandably, she has been a

real grump and just about going to school, home and bed - not really good

quality of life. Tonight, she was brilliant and really reminded me what a

total pleasure she can be when she has enough sleep. The first time in a

long time she has had two consecutive nights' sleep. Loved getting her

ready for bed. No howling, no kicking, no rocking while I tried to comb her

hair......wonderful! And we even fitted in a story (a real novelty these

days as she is so tired she just starts crying if we start one) and we had a

really nice long bedtime cuddle! Aaaaahhhh..........

Me, I am an overworked wreck. It was probably a bad move to start my course

at time when one daughter was just starting school and the other has chronic

sleep disturbance. Enjoying the new challenges, but they are a challenge

too many and I have become a disorganised chaotic and even more grey woman.

Really looking forward to the next 2 weeks when my student is on leave. My

job is very demanding right now so having a student as well is not good for

my sanity even if good for my professional and personal development. Roll

on July when it will be over.

Poor old Simon is surviving well under the strain. It is a household

dominated by irritable women - Elly because it is end of term and she is

tired, for obvious reasons, me - well you know I look for any excuse

to give him grief.

On that note, it has been lovely to have a little peep and catch-up. Will

be on and off for a while. Everyone take great care of yourselves and give

yourselves (and each other) big hugs. And now looking at this epic, I

remember why I could not keep up with being on the list! I could never say

anything in brief, could I? And yikes!!! Look at the time! I'm off to

bed!

--

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Flo,

Hi, hi, girlfriend! So glad you've dropped in for a visit. We've missed

you! Although Simon's

done a wonderful job, but, you know, that 'gift of gab' is in that set of

genes he just doesn't have.

lol. but we certainly love him, praise his organization skills, and do not

fault him his " gene condition " .

Truly, you paint such terrific word pictures, I feel I was sitting beside

you in the audience.

Someday you'll have to explain to the girls that they have an " aunty "

in the states,

who probably won't be any help for an inheritance, but is one of their most

vocal cheerleaders,

and a staunch supporter of the FULL expression of their " Star " qualities. (

A little miffing

behavior here and there is a small price to pay for greatness.) Besides

that, all on their own,

they'll have to have at least two or three chapters in the Charge book just

to begin to give

proper acknowledgement to their creative talents.

Is Elly a little dickins, or what! Who is teaching whom, really. In fact,

the more I think of it,

you could write children's books- but then again, what Mom wants to put the

idea of galoshes

and the fish tank into any little sleepyheads. Better keep the day job, I

guess.

>

So, it certainly makes sense that everyone is a bit tired, with all the

circumstances you've

conveyed. It sure would be wonderful if someone could get a real grip on

this sleep issue.

You did have the MRI prior to CI, didn't you. They can bloodtest for

seratonin levels, I believe.

You'd think there would be more they could look for (too much or too little

of something) as

it's such a prevelant problem in Charge. Last month I understood the lack of

melatonin, but I've

totally forgotten it all now. I wonder what That's a lack of? lol.

>

I hope you all enjoy your holiday 'downtime' to the fullest, and that

munchkin can get some sleep!

(You know you're too busy when holiday time is a break) Be sure to tell us

how it's coming along.

;-)

in Ma. (, 21 yrs)

[Guest guest]

Flo-

It's so good to hear from you! Even at your crabby, stressed-out worst, you

are lovely!

I hope you get Jess' sleep stuff figured out. Aubrie was a way out of sorts

yesterday after school and through the evening. I'm sure she was tired and

perhaps the holiday excitement is getting to her. But if it were a chronic

thing and I lost sight of my precious little pixie, it would be awful!

Michele W

Aubrie's mom

[Guest guest]

Michele

You don't live her!!!!!!

Simon (said with tongue firmly planted in cheek)

>

> Flo-

>

> It's so good to hear from you! Even at your crabby, stressed-out worst,

> you

> are lovely!

>

> I hope you get Jess' sleep stuff figured out. Aubrie was a way out of

> sorts

> yesterday after school and through the evening. I'm sure she was tired and

> perhaps the holiday excitement is getting to her. But if it were a chronic

> thing and I lost sight of my precious little pixie, it would be awful!

>

> Michele W

> Aubrie's mom

>

>

[Guest guest]

Flo, so great to hear from you! It's a little hectic here right now too, so I

won't write much. Just wanted to say thanks for the update on everyone, and I

hope you get Jess's sleep issues sorted out soon. Been there, done that, no

fun.

Hope your holidays are great!

, mom to (4)

http://kauffmanlak.blogspot.com/

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

Access over 1 million songs - Yahoo! Music Unlimited.

[Guest guest]

Oops how to screw up an attempt at a funny reply. I meant to say 'you don't

live with her'!!

>

> Michele

>

> You don't live her!!!!!!

>

> Simon (said with tongue firmly planted in cheek)

>

>

>

> >

> > Flo-

> >

> > It's so good to hear from you! Even at your crabby, stressed-out worst,

> > you

> > are lovely!

> >

> > I hope you get Jess' sleep stuff figured out. Aubrie was a way out of

> > sorts

> > yesterday after school and through the evening. I'm sure she was tired

> > and

> > perhaps the holiday excitement is getting to her. But if it were a

> > chronic

> > thing and I lost sight of my precious little pixie, it would be awful!

> >

> > Michele W

> > Aubrie's mom

> >

> >

[Guest guest]

It was still funny!

Lori Myers

Re: Hi all etc

Oops how to screw up an attempt at a funny reply. I meant to say 'you don't

live with her'!!

>

> Michele

>

> You don't live her!!!!!!

>

> Simon (said with tongue firmly planted in cheek)

>

>

>

> >

> > Flo-

> >

> > It's so good to hear from you! Even at your crabby, stressed-out worst,

> > you

> > are lovely!

> >

> > I hope you get Jess' sleep stuff figured out. Aubrie was a way out of

> > sorts

> > yesterday after school and through the evening. I'm sure she was tired

> > and

> > perhaps the holiday excitement is getting to her. But if it were a

> > chronic

> > thing and I lost sight of my precious little pixie, it would be awful!

> >

> > Michele W

> > Aubrie's mom

> >

> >

[Guest guest]

As I read it I assumed it was a kind of UK'ism. :-) It all is good.

Re: Hi all etc

Oops how to screw up an attempt at a funny reply. I meant to say 'you don't

live with her'!!

>

> Michele

>

> You don't live her!!!!!!

>

> Simon (said with tongue firmly planted in cheek)

>

>

>

> >

> > Flo-

> >

> > It's so good to hear from you! Even at your crabby, stressed-out worst,

> > you

> > are lovely!

> >

> > I hope you get Jess' sleep stuff figured out. Aubrie was a way out of

> > sorts

> > yesterday after school and through the evening. I'm sure she was tired

> > and

> > perhaps the holiday excitement is getting to her. But if it were a

> > chronic

> > thing and I lost sight of my precious little pixie, it would be awful!

> >

> > Michele W

> > Aubrie's mom

> >

> >

[Guest guest]

welcome back Flo

I am weary reading this post !! You dont realise how manic life is

until you write it down!!

Cant imagine how hard the sleep problem must be, Amelie sleeps 11pm

til 9am but I keep waiting for things to change, it may well be

because she is food pump fed she doesnt get hungry or wake, not sure

just praying it doesnt alter.

Your student comments made me laugh...arnt we draining, questions

questions questions!! my mentor sometimes gives me the evil eye of

shut up please!!!!

keep going your a trooper!!

hugs the Channies.

> Flo,

> Hi, hi, girlfriend! So glad you've dropped in for a visit. We've missed

> you! Although Simon's

> done a wonderful job, but, you know, that 'gift of gab' is in that set of

> genes he just doesn't have.

> lol. but we certainly love him, praise his organization skills, and do not

> fault him his " gene condition " .

>

> Truly, you paint such terrific word pictures, I feel I was sitting beside

> you in the audience.

> Someday you'll have to explain to the girls that they have an " aunty "

> in the states,

> who probably won't be any help for an inheritance, but is one of their

> most

> vocal cheerleaders,

> and a staunch supporter of the FULL expression of their " Star " qualities. (

> A little miffing

> behavior here and there is a small price to pay for greatness.) Besides

> that, all on their own,

> they'll have to have at least two or three chapters in the Charge book just

> to begin to give

> proper acknowledgement to their creative talents.

> Is Elly a little dickins, or what! Who is teaching whom, really. In fact,

> the more I think of it,

> you could write children's books- but then again, what Mom wants to put the

> idea of galoshes

> and the fish tank into any little sleepyheads. Better keep the day job, I

> guess.

> >

> So, it certainly makes sense that everyone is a bit tired, with all the

> circumstances you've

> conveyed. It sure would be wonderful if someone could get a real grip on

> this sleep issue.

> You did have the MRI prior to CI, didn't you. They can bloodtest for

> seratonin levels, I believe.

> You'd think there would be more they could look for (too much or too little

> of something) as

> it's such a prevelant problem in Charge. Last month I understood the lack

> of

> melatonin, but I've

> totally forgotten it all now. I wonder what That's a lack of? lol.

> >

> I hope you all enjoy your holiday 'downtime' to the fullest, and that

> munchkin can get some sleep!

> (You know you're too busy when holiday time is a break) Be sure to tell

> us

> how it's coming along.

> ;-)

> in Ma. (, 21 yrs)

>

>

>

[Guest guest]

You're either one heck of a guy to manage her - or she's crabby because

you're not! Hmmm. I've met you both and I'm not sure either is really quite

right!

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

simon howard

Sent: Thursday, December 14, 2006 9:43 AM

To: CHARGE

Subject: Re: Hi all etc

Oops how to screw up an attempt at a funny reply. I meant to say 'you don't

live with her'!!

On 14/12/06, simon howard <simonthoward@

<mailto:simonthoward%40googlemail.com> googlemail.com> wrote:

>

> Michele

>

> You don't live her!!!!!!

>

> Simon (said with tongue firmly planted in cheek)

>

>

> On 14/12/06, Michele Westmaas <momonamission@

<mailto:momonamission%40verizon.net> verizon.net> wrote:

> >

> > Flo-

> >

> > It's so good to hear from you! Even at your crabby, stressed-out worst,

> > you

> > are lovely!

> >

> > I hope you get Jess' sleep stuff figured out. Aubrie was a way out of

> > sorts

> > yesterday after school and through the evening. I'm sure she was tired

> > and

> > perhaps the holiday excitement is getting to her. But if it were a

> > chronic

> > thing and I lost sight of my precious little pixie, it would be awful!

> >

> > Michele W

> > Aubrie's mom

> >

> >

[Guest guest]

Ellen,

You're getting the tube out??? When??? Wow!!!!

in Ma. (, 21 yrs)

>

> hey xxxxxxxxxxxxxxxxxxx simon tell u bout jeujonostomy removal feb

actualy

> gotr the admision letter today!!!!!!!!!!!!!!!1

>

>

>

[Guest guest]

Ellen,

This definitely merits a wow and more. So happy for you. Martha with

hugs

[Guest guest]

Me too, Ellen. I am so pleased.

xxoo

Re: Re: Hi all etc

Ellen,

This definitely merits a wow and more. So happy for you. Martha with

hugs

[Guest guest]

Brilliant Ellen! I too am really pleased. Now that's one bit of news I did

not know so in case I am off again when you are due in Feb, very good luck

and I look forward to hearing the update. alternatively, if we are ever on

MSN at same time in view of time difference, we can chat. I am on

flonjeru@....

>

> hey xxxxxxxxxxxxxxxxxxx simon tell u bout jeujonostomy removal feb

> actualy

> gotr the admision letter today!!!!!!!!!!!!!!!1

>

>

> Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Thank you everyone for your hearty welcome back. , you make me crack

up totally! I miss this list for so many different reasons; the wisdom, the

laughs, the inspiration, the mutual support etc etc etc. While Simon has

been telling me all the big things, I realise now that the little things

(you know, those passing one line comments the writer doesn't even give a

second thought to) teach us so much. I just read one of Michele's accounts

of Aubrie and her previous dislike of being comforted and current preference

for self-comfort until she is ready for other comfort and had an " A-HA "

moment. Only on this list! No doctor or therapist could give you some of

the insights other parents or professionals working intensively with our

children (where are you Pam?) could.

Student midwife Chan, you are so right about students. They make you have

to give a reason or theory about everything you have just been doing for 15

years because you know it is the thing to do! I am loving practice teaching

but my grey matter is being challenged considerably. I may spend some time

at Xmas reading up on linking theort to practice etc just so I can bluff

more convincingly. Glad to hear your mentor is suffering too. But

delivering babies already???? How exciting is that! Must have given you

such a buzz! Well worth the career change. You missing the minging mouths,

teeth and gums yet?

On sleep, picking up prescription on Tues so we will be able to give it a go

during holidays. Keeping everything crossed for poor little . She

needs a break now. , you made me smile with the " been there, done

that, no fun " thing. How very right. And if anyone else gives me advise

about camomile tea I will scream! And as these things come in clusters,

Simon is off to take the munchkin to see the neuro on Tues for fits (same

day I am picking up melatonin!).

Better stop procrastinating on report I am supposed to be doing for work

tomorrow. See, the stupid job is now spilling into my weekends. I NEED A

CHANGE OF CAREER!

Enough hysterics and knuckle down to it. I am hanging around for a couple

of weeks so will hopefully be able to keep up reading about all that is

going on. But for now, hope you all have a great break and enjoy Xmas,

Kwanzaa or just an excuse to eat too much, drink too much and fall out with

all family members!

Best...........

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Flo,

dear thing. I am here. As I read your post and got to the part about falling out

with relatives: it has already started on my end!!! Cranky teenagers and just

20-year olders who want to be treated like adults but act like children!! And

when called on it all, decide that they just CAN'T be here for Christmas. UGH!!!

Tis the season and here we go!! Always some drama!

Glad the meds and neuro are coinciding--will be interested to hear all the

details. And...for as much sleep as Jess might get, how much you and Simon get,

too!!

Also, I am with you--the " small " comments are often the most profound, aren't

they? Take care and look forward to the next two weeks with you. Simon, good

luck with the appt.

xo

pam

Re: Hi all etc

Thank you everyone for your hearty welcome back. , you make me crack

up totally! I miss this list for so many different reasons; the wisdom, the

laughs, the inspiration, the mutual support etc etc etc. While Simon has

been telling me all the big things, I realise now that the little things

(you know, those passing one line comments the writer doesn't even give a

second thought to) teach us so much. I just read one of Michele's accounts

of Aubrie and her previous dislike of being comforted and current preference

for self-comfort until she is ready for other comfort and had an " A-HA "

moment. Only on this list! No doctor or therapist could give you some of

the insights other parents or professionals working intensively with our

children (where are you Pam?) could.

Student midwife Chan, you are so right about students. They make you have

to give a reason or theory about everything you have just been doing for 15

years because you know it is the thing to do! I am loving practice teaching

but my grey matter is being challenged considerably. I may spend some time

at Xmas reading up on linking theort to practice etc just so I can bluff

more convincingly. Glad to hear your mentor is suffering too. But

delivering babies already???? How exciting is that! Must have given you

such a buzz! Well worth the career change. You missing the minging mouths,

teeth and gums yet?

On sleep, picking up prescription on Tues so we will be able to give it a go

during holidays. Keeping everything crossed for poor little . She

needs a break now. , you made me smile with the " been there, done

that, no fun " thing. How very right. And if anyone else gives me advise

about camomile tea I will scream! And as these things come in clusters,

Simon is off to take the munchkin to see the neuro on Tues for fits (same

day I am picking up melatonin!).

Better stop procrastinating on report I am supposed to be doing for work

tomorrow. See, the stupid job is now spilling into my weekends. I NEED A

CHANGE OF CAREER!

Enough hysterics and knuckle down to it. I am hanging around for a couple

of weeks so will hopefully be able to keep up reading about all that is

going on. But for now, hope you all have a great break and enjoy Xmas,

Kwanzaa or just an excuse to eat too much, drink too much and fall out with

all family members!

Best...........

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

13th of feb u no aneithis called today!!!!!!!!!!!!1 so will give u exact

date and ur in my msn address allready flo im ellenhowe#hotmail.com LOL

>

> Flo,

> dear thing. I am here. As I read your post and got to the part about

> falling out with relatives: it has already started on my end!!! Cranky

> teenagers and just 20-year olders who want to be treated like adults but act

> like children!! And when called on it all, decide that they just CAN'T be

> here for Christmas. UGH!!! Tis the season and here we go!! Always some

> drama!

>

> Glad the meds and neuro are coinciding--will be interested to hear all the

> details. And...for as much sleep as Jess might get, how much you and Simon

> get, too!!

>

> Also, I am with you--the " small " comments are often the most profound,

> aren't they? Take care and look forward to the next two weeks with you.

> Simon, good luck with the appt.

> xo

> pam

>

> Re: Hi all etc

>

> Thank you everyone for your hearty welcome back. , you make me crack

> up totally! I miss this list for so many different reasons; the wisdom,

> the

> laughs, the inspiration, the mutual support etc etc etc. While Simon has

> been telling me all the big things, I realise now that the little things

> (you know, those passing one line comments the writer doesn't even give a

> second thought to) teach us so much. I just read one of Michele's accounts

> of Aubrie and her previous dislike of being comforted and current

> preference

> for self-comfort until she is ready for other comfort and had an " A-HA "

> moment. Only on this list! No doctor or therapist could give you some of

> the insights other parents or professionals working intensively with our

> children (where are you Pam?) could.

>

> Student midwife Chan, you are so right about students. They make you have

> to give a reason or theory about everything you have just been doing for

> 15

> years because you know it is the thing to do! I am loving practice

> teaching

> but my grey matter is being challenged considerably. I may spend some time

> at Xmas reading up on linking theort to practice etc just so I can bluff

> more convincingly. Glad to hear your mentor is suffering too. But

> delivering babies already???? How exciting is that! Must have given you

> such a buzz! Well worth the career change. You missing the minging mouths,

> teeth and gums yet?

>

> On sleep, picking up prescription on Tues so we will be able to give it a

> go

> during holidays. Keeping everything crossed for poor little . She

> needs a break now. , you made me smile with the " been there, done

> that, no fun " thing. How very right. And if anyone else gives me advise

> about camomile tea I will scream! And as these things come in clusters,

> Simon is off to take the munchkin to see the neuro on Tues for fits (same

> day I am picking up melatonin!).

>

> Better stop procrastinating on report I am supposed to be doing for work

> tomorrow. See, the stupid job is now spilling into my weekends. I NEED A

> CHANGE OF CAREER!

>

> Enough hysterics and knuckle down to it. I am hanging around for a couple

> of weeks so will hopefully be able to keep up reading about all that is

> going on. But for now, hope you all have a great break and enjoy Xmas,

> Kwanzaa or just an excuse to eat too much, drink too much and fall out

> with

> all family members!

>

> Best...........

> Flo (UK)

> Mum to - CHARGE - (6) and Elly (4)

>

>

[Guest guest]

Thank you for addy Ellen. I am feeling particularly smug because I have

finally got the hang of using MSN even if I was forced into it by a deaf

friend who urgently needed to ask me something. I look forward to chatting

one day and hearing your news.

>

> 13th of feb u no aneithis called today!!!!!!!!!!!!1 so will give u exact

> date and ur in my msn address allready flo im ellenhowe#hotmail.com LOL

>

--

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)