Re: Amelie OFF vent NEW YEARS EVE !!!!!!!!!

[Guest guest]

Lesley-

Great news!! I hope lil' Miss Amelie gets used to her new breathing status

and calms down to ring in the new year -- one of health and happy surprises!

Michele W

Aubrie's mom

[Guest guest]

Yipee for Amelie! This is wonderful news; I hope she adjusts to the change and

settles down very soon. Lots of love and best wishes for the new year. I will

dig out my ABBA CD just for you!

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

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

[Guest guest]

I have the ABBA CD out and we will be dancing and celebrating and thinking

of her calming down and breathing easy!

Kim L

> Dear All

>

> We have come home for two hours to see the girls only because they

> have had to give Amelie some Chloral to sedate her for a while, she

> has been very distressed since they took the tube out, I should

> point out Amelie doesnt ever cry, very very rare if she does, we

> usually race to the hospital it usually signals she is ill, so we

> have struggled today to cope worse than being vented really, because

> she is making us both sad, but i know its also fantastic news, 15

> days ago seems so long ago, the best new year we could have wished

> for. They said the next couple of hours are important to make sure

> they dont have to put her back on but her sats are good considering

> she is so upset,

>

> Tonight I want you all to sing and play ABBA songs as part of your

> new years eve celebrations, we plan to get back to the hospital to

> bring in the new year with Amelie cant wait to get shut of 2005!!

> worst one we have ever been dealt.

>

> Also Amelie has no lobe on the right ear, funny really i wonder if

> their are more chargers with the right one missing! lets have a

> survey!!

>

> HAPPY NEW YEAR WILL LET YOU ALL KNOW TOMORROW WHATS GOING TO HAPPEN

> TO AMELIE,

>

> also she was having low blood sugars around the time of the BRADY's

> so well done to all those who suggested it, when I told the nurses

> they were stuck for words and asked where i had found this out my

> reply was ' the experts in the field of CHARGE' she replied ' who

> are they do we know them'!! Parents on this listserv seem to know

> all there is to know.

>

> got to go cant yack all night important things to do,

>

> God bless everyone

> Lesley Darren And Girls,

> PS might have to restart Amelies birthday celebrations, I have

> cancelled it!

>

>

>

>

>

>

>

>

> 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]

wow well done amelie i had a godo new years eve cant believe that today is

06 wow stayed at my friends house last night we went foru blocks to see the

nine oclock fire works and missed them then watched the midnight ones on

telle hugs ellen

>

> I have the ABBA CD out and we will be dancing and celebrating and thinking

> of her calming down and breathing easy!

>

> Kim L

>

>

>

>

> > Dear All

> >

> > We have come home for two hours to see the girls only because they

> > have had to give Amelie some Chloral to sedate her for a while, she

> > has been very distressed since they took the tube out, I should

> > point out Amelie doesnt ever cry, very very rare if she does, we

> > usually race to the hospital it usually signals she is ill, so we

> > have struggled today to cope worse than being vented really, because

> > she is making us both sad, but i know its also fantastic news, 15

> > days ago seems so long ago, the best new year we could have wished

> > for. They said the next couple of hours are important to make sure

> > they dont have to put her back on but her sats are good considering

> > she is so upset,

> >

> > Tonight I want you all to sing and play ABBA songs as part of your

> > new years eve celebrations, we plan to get back to the hospital to

> > bring in the new year with Amelie cant wait to get shut of 2005!!

> > worst one we have ever been dealt.

> >

> > Also Amelie has no lobe on the right ear, funny really i wonder if

> > their are more chargers with the right one missing! lets have a

> > survey!!

> >

> > HAPPY NEW YEAR WILL LET YOU ALL KNOW TOMORROW WHATS GOING TO HAPPEN

> > TO AMELIE,

> >

> > also she was having low blood sugars around the time of the BRADY's

> > so well done to all those who suggested it, when I told the nurses

> > they were stuck for words and asked where i had found this out my

> > reply was ' the experts in the field of CHARGE' she replied ' who

> > are they do we know them'!! Parents on this listserv seem to know

> > all there is to know.

> >

> > got to go cant yack all night important things to do,

> >

> > God bless everyone

> > Lesley Darren And Girls,

> > PS might have to restart Amelies birthday celebrations, I have

> > cancelled it!

> >

> >

> >

> >

> >

> >

> >

> >

> > 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,

Thats great news!! I am so happy for you all, I hope she keeps it up

and can come home soon.

Hugs,

Crystal and Eva (8 month charger)

>

> Dear All

>

> We have come home for two hours to see the girls only because they

> have had to give Amelie some Chloral to sedate her for a while,

she

> has been very distressed since they took the tube out, I should

> point out Amelie doesnt ever cry, very very rare if she does, we

> usually race to the hospital it usually signals she is ill, so we

> have struggled today to cope worse than being vented really,

because

> she is making us both sad, but i know its also fantastic news, 15

> days ago seems so long ago, the best new year we could have wished

> for. They said the next couple of hours are important to make sure

> they dont have to put her back on but her sats are good

considering

> she is so upset,

>

> Tonight I want you all to sing and play ABBA songs as part of your

> new years eve celebrations, we plan to get back to the hospital to

> bring in the new year with Amelie cant wait to get shut of 2005!!

> worst one we have ever been dealt.

>

> Also Amelie has no lobe on the right ear, funny really i wonder

if

> their are more chargers with the right one missing! lets have a

> survey!!

>

> HAPPY NEW YEAR WILL LET YOU ALL KNOW TOMORROW WHATS GOING TO

HAPPEN

> TO AMELIE,

>

> also she was having low blood sugars around the time of the

BRADY's

> so well done to all those who suggested it, when I told the nurses

> they were stuck for words and asked where i had found this out my

> reply was ' the experts in the field of CHARGE' she replied ' who

> are they do we know them'!! Parents on this listserv seem to know

> all there is to know.

>

> got to go cant yack all night important things to do,

>

> God bless everyone

> Lesley Darren And Girls,

> PS might have to restart Amelies birthday celebrations, I have

> cancelled it!

>