Re: Re: Amelie looking Good!

[Guest guest]

Glad to hear about Amelie!!

Give her a high five from Kennedy and of course we don't mind if you use

any/all of Kennedy's info - that's what it's up there for. We searched and

searched when she was in the hospital to find another REAL person with CHARGE to

see what things would/could be like and there wasn't much so we wanted to share

her with everyone so that some new family could find her when going through

those first scary months.

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

[Guest guest]

How soon do you absolutely need it?? I'm a procrastinator. Without a

deadline, it'll never get to you...

Michele

Re: Amelie looking Good!

>

> Lesley-

>

> First off -- I am so thrilled to hear how well Amelie is doing!!

> Unbelievable!!!

>

> I have video of early feeding with Aubrie. An entire feeding

session from

> start to finish explaining how much, how the pump works, the oral

part, etc.

> At that time, she got a bit by mouth and the rest by tube via

pump. It's

> home video so not very grand, but sure gets the idea across. I

think I have

> a separate session with the feeding from start to huge reflux

vomit. I

> would think there's time to get a video to you if you think it

would help

> with your presentation. There is good footage of how hard she has

to work to

> manage the swallow.

>

> Michele W

> Aubrie's mom 8 yrs

Dear Michele Fantastic Idea, we have all visual aids in the

classroom, so this would be cool I have no footage of Amelie, never

had her home long enough to find the camcorder!!

My home address is

22 Amberhill Way

Boothstown

Worsley

Manchester

M28 1YJ

England: where the sun rarely shines!!!

Really kind of you Lesley x

>

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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

great shes doing well wnat a coppy of one of my speaches i supose you were

destined for this speach oh how i wish i had done my pip on charge but my

teachers told me to clear away from me and my experiences LOL love you all

ellen

>

> Oh michele, how funny although thats a whopper of a word I dont even

> know what it means, but my due date is 27.03.06 although I have

> beeen told to have it ready two weeks early incase we are brought

> forward.

>

> another funny story, when we pulled the dates out of a hat i was

> first in the class and we will be doing three students every week

> starting 16th Feb, so i pulled the ticket out and it said 27th

> March, i shreeked 'oh no thats my dads birthday' the lecturer looked

> at me and really sympathetically said 'no problem due you want to

> pull another quickly before they've all gone'

> I replied' oh no its not a problem, my dads dead, its just an

> unlucky day for me' the whole class was in uproar, i didnt mean it

> to sound so funny but we justall cracked up laughing!! not because

> hes dead of course..

>

> thanks a mill lesley xx

>

>

>

>

>

>

> > >

> > > Lesley-

> > >

> > > First off -- I am so thrilled to hear how well Amelie is doing!!

> > > Unbelievable!!!

> > >

> > > I have video of early feeding with Aubrie. An entire feeding

> > session from

> > > start to finish explaining how much, how the pump works, the

> oral

> > part, etc.

> > > At that time, she got a bit by mouth and the rest by tube via

> > pump. It's

> > > home video so not very grand, but sure gets the idea across. I

> > think I have

> > > a separate session with the feeding from start to huge reflux

> > vomit. I

> > > would think there's time to get a video to you if you think it

> > would help

> > > with your presentation. There is good footage of how hard she

> has

> > to work to

> > > manage the swallow.

> > >

> > > Michele W

> > > Aubrie's mom 8 yrs

> >

> >

> >

> > Dear Michele Fantastic Idea, we have all visual aids in the

> > classroom, so this would be cool I have no footage of Amelie,

> never

> > had her home long enough to find the camcorder!!

> >

> > My home address is

> >

> > 22 Amberhill Way

> > Boothstown

> > Worsley

> > Manchester

> > M28 1YJ

> > England: where the sun rarely shines!!!

> >

> > Really kind of you Lesley x

> > >

> >

> >

> >

> >

> >

> >

> > 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@c... or visit

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

> Syndrome Canada

> > information and membership, please visit

> http://www.chargesyndrome.ca or

> > email info@c... .

> > 8th International

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

> available at

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

> >

[Guest guest]

Lesley-

I got the humor in the birthday story!

Here's a similar one. My sister and mom were here and we were talking about

our cats. My sister's cat will jump up on her bare back after a shower. I

was commenting how strange that our cat hasn't done that in ages. Then I

realized... oh yeah, he's been dead for years!!

Duh!

Michele W

[Guest guest]

Lesley,

As far as visuals, I have many photos; Dylan being tube fed and sucking on

the pacifier, but the thing that still gets me is the video of him nursing

(one of the few times he managed it) with his high pitched crowing noise

that I videoed so someone would believe he was having problems eating and it

was more than I just didn't know how to nurse (I guess they thought I forgot

after my first 2 kids). Not that I necessarily want you to show it - no one

has seen it, but it rips my heart out.

Dylan's trouble eating is what led to his diagnosis at 3 weeks, along with

the other neuro things like not regulating his body temperature, glucose and

so on as if he were a premie when he was not for sure. He did not have the

choanal atresia or a heart defect that needed immediate repair, so it was

not the emergency thing it is for some. He was just not right in many

subtle ways that would be important for a midwife to be aware of if they do

any follow up with the mum and newborn.

Kim

>

>>

>> Lesley-

>>

>> First off -- I am so thrilled to hear how well Amelie is doing!!

>> Unbelievable!!!

>>

>> I have video of early feeding with Aubrie. An entire feeding

> session from

>> start to finish explaining how much, how the pump works, the oral

> part, etc.

>> At that time, she got a bit by mouth and the rest by tube via

> pump. It's

>> home video so not very grand, but sure gets the idea across. I

> think I have

>> a separate session with the feeding from start to huge reflux

> vomit. I

>> would think there's time to get a video to you if you think it

> would help

>> with your presentation. There is good footage of how hard she has

> to work to

>> manage the swallow.

>>

>> Michele W

>> Aubrie's mom 8 yrs

>

>

>

> Dear Michele Fantastic Idea, we have all visual aids in the

> classroom, so this would be cool I have no footage of Amelie, never

> had her home long enough to find the camcorder!!

>

> My home address is

>

> 22 Amberhill Way

> Boothstown

> Worsley

> Manchester

> M28 1YJ

> England: where the sun rarely shines!!!

>

> Really kind of you Lesley x

>>

>

>

>

>

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

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

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

>

[Guest guest]

Michele - We are too alike. Kim

> How soon do you absolutely need it?? I'm a procrastinator. Without a

> deadline, it'll never get to you...

>

> Michele

>

> Re: Amelie looking Good!

>

>

>>

>> Lesley-

>>

>> First off -- I am so thrilled to hear how well Amelie is doing!!

>> Unbelievable!!!

>>

>> I have video of early feeding with Aubrie. An entire feeding

> session from

>> start to finish explaining how much, how the pump works, the oral

> part, etc.

>> At that time, she got a bit by mouth and the rest by tube via

> pump. It's

>> home video so not very grand, but sure gets the idea across. I

> think I have

>> a separate session with the feeding from start to huge reflux

> vomit. I

>> would think there's time to get a video to you if you think it

> would help

>> with your presentation. There is good footage of how hard she has

> to work to

>> manage the swallow.

>>

>> Michele W

>> Aubrie's mom 8 yrs

>

>

>

> Dear Michele Fantastic Idea, we have all visual aids in the

> classroom, so this would be cool I have no footage of Amelie, never

> had her home long enough to find the camcorder!!

>

> My home address is

>

> 22 Amberhill Way

> Boothstown

> Worsley

> Manchester

> M28 1YJ

> England: where the sun rarely shines!!!

>

> Really kind of you Lesley x

>>

>

>

>

>

>

>

> 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 - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

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

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

>

[Guest guest]

Lesley-

Is it too late to get this info to you? I tried to email the files, but

they were too large. I will try again with them zipped. If that doesn't

work, I'll burn a disk and mail it. Will you be able to use the video? If

so, I can move some VCRs together to copy the tape.

Michele

Re: Amelie looking Good!

>

> Lesley-

>

> First off -- I am so thrilled to hear how well Amelie is doing!!

> Unbelievable!!!

>

> I have video of early feeding with Aubrie. An entire feeding

session from

> start to finish explaining how much, how the pump works, the oral

part, etc.

> At that time, she got a bit by mouth and the rest by tube via

pump. It's

> home video so not very grand, but sure gets the idea across. I

think I have

> a separate session with the feeding from start to huge reflux

vomit. I

> would think there's time to get a video to you if you think it

would help

> with your presentation. There is good footage of how hard she has

to work to

> manage the swallow.

>

> Michele W

> Aubrie's mom 8 yrs

Dear Michele Fantastic Idea, we have all visual aids in the

classroom, so this would be cool I have no footage of Amelie, never

had her home long enough to find the camcorder!!

My home address is

22 Amberhill Way

Boothstown

Worsley

Manchester

M28 1YJ

England: where the sun rarely shines!!!

Really kind of you Lesley x

>

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 - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Lesley-

Don't worry, the disks will be on their way. Hopefully, all you'll have to

do is stick them in and the files will play.

Michele

Re: Amelie looking Good!

,

,I am useless about this kind of stuff, my computer skills are very

poor I am on a course to improve, but my progress is slow, I am not

meant to be a whiz kid on these machines, my husband bought me a

laptop for college today a birthday pressie i was

delighted,especially in case I get my place for university to make

things easier,( might be because no one can get on this one because

I am hogging it!!) and i cant get that started so the man at the

shop said bring it back he will get me up and running!!!!!!!!! how

embarrassing is that!! also I managed to set it to USA mode and now

my keyboard has gone crazy and nothing is where it should be when i

try and type things, do you catch my drift here...... useless.

words like zipped, burn a disk dont know? never done that yet in

class, dont worry Michele if its a trauma, I am past caring at

present, I feel as though my brain has had enough it aches with all

this learning, and when i get back to the shop on Wednesday they

will all be laughing at me i am sure.

cheers lesley

> >

> > Lesley-

> >

> > First off -- I am so thrilled to hear how well Amelie is doing!!

> > Unbelievable!!!

> >

> > I have video of early feeding with Aubrie. An entire feeding

> session from

> > start to finish explaining how much, how the pump works, the

oral

> part, etc.

> > At that time, she got a bit by mouth and the rest by tube via

> pump. It's

> > home video so not very grand, but sure gets the idea across. I

> think I have

> > a separate session with the feeding from start to huge reflux

> vomit. I

> > would think there's time to get a video to you if you think it

> would help

> > with your presentation. There is good footage of how hard she

has

> to work to

> > manage the swallow.

> >

> > Michele W

> > Aubrie's mom 8 yrs

>

>

>

> Dear Michele Fantastic Idea, we have all visual aids in the

> classroom, so this would be cool I have no footage of Amelie,

never

> had her home long enough to find the camcorder!!

>

> My home address is

>

> 22 Amberhill Way

> Boothstown

> Worsley

> Manchester

> M28 1YJ

> England: where the sun rarely shines!!!

>

> Really kind of you Lesley x

> >

>

>

>

>

>

>

> 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@c... or visit

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

Syndrome Canada

> information and membership, please visit

http://www.chargesyndrome.ca or

> email info@c... .

> 8th International

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

available at

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

>