Re: Amelie - at last I can see the light!!!!!

[Guest guest]

In a message dated 1/6/2006 9:21:50 AM Pacific Standard Time,

lesleychan@... writes:

BIRTHDAY GIRLIE ON TUESDAY 10TH JANUARY 2006-

Oh, you give that darling baby " Happy Birthday " kisses from the entire

on family (and that will be a lot of kisses indeed - mom Debra, dad

,

children Stephani, Niki, Chaston, Trynton & Zak, grandkids Seasyn, Gabe, Kodi

& Lucius).

Isn't it wonderful to hit that 1 year mark? And take it from a mother of 2

CHARGErs, it " does " get easier and the surgeries, proceedures, tests and

illiness do get less as the years roll on. Just make sure you take time to

enjoy

the happy times and remember that there are a lot of us mothers out here to

help you to cope and to understand this time in your life. Never hesitate to

ask our help or just to listen.

HAPPY BIRTHDAY AMELIE

Debra W

[Guest guest]

Lesley,

I am glad the meeting with the doctors led to a feeling of peace and that

Amelie is showing such signs of bouncing back. I am praying for a smiling,

comfortable girl for her birthday!

Kim L

> Dear Charge clan

>

> I feel at peace with myself today, lots of developments, our so

> called tube that needed to come from America came from Gloucester in

> the UK, so I dont know what all the hype was about, they do come

> from America but we must import them , no big deal, except someone

> mentioned the courier service was an extra £28.00, the doctor saw my

> face, and said 'oh no worries just order it' Darren jokingly said do

> you want my debit card!!

>

> Amelie was taken to radiography where under the xray and barium they

> passed it from the stomach to the jejunum. She managed to struggle,

> which was sad but good it means she is getting back to her little

> ways, she hasnt been starved of o2 ( at least I dont think so) ,

> because today she gave a little lob sided smile and chuckle,it was

> just like before the old Amelie I was delighted, despite the fact

> she has lost weight and does look frail.

>

> We did get to speak to the top team Bianchis guy Mr Morabito & Mrs

> Kauffman, and discussed Amelies options in depth, In view of the

> respiratory arrest and two cardiac arrests we are going with the

> dissociation, I know some of you will be cringing, but we dont want

> the resposibility of risking a repeat nissen and another GA and it

> fail, and he gave us the percentage for all nissens not just charge

> nissens, and if it fails she will go down hill, rapidly, so we think

> better to do the dissociation and have done with, the stomach will

> not be able to regurgitate back up the oesophagus, and this will

> give Amelie the chance she needs to cure the state her lungs are in.

>

> There will not be a rush to do this they need her lungs stronger for

> the GA, they are hoping the j tube will keep the weight on her and

> she hopefully wont reflux during this time, so the lungs in theory

> should improve, however!!! if she gets 'dumping syndrome' where I

> think the food doesnt get absorbed in the ileum, then the surgery

> will be sone sooner rather than later, so this next week they will

> weigh and observe what she does next, and keep the vigourous physio

> up, she is better in her self not as weepy, which is wonderful for

> us as parents.

>

> Whilst we are not looking forward to the risks of the surgery, we

> feel its the only way forward, and to hopefully get her home, even

> better it would be fantastic if the j tube worked and she needed no

> surgery but I doubt this, as she had one before for 5 days and she

> had chronic diarrhoea.

>

> fingers crossed

> Lesley Mum to le Olivia Fleur and AMELIE WHO WILL BE 1 A

> BIRTHDAY GIRLIE ON TUESDAY 10TH JANUARY 2006- WHAT A BLOODY YEAR!!

> at least shes still here!!!!!!

>

>

>

>

>

>

>

> 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]

I ma glad thing are finally starting to work for you all, still

praying for you!

Crystal and Eva (8 month charger)

>

> Dear Charge clan

>

> I feel at peace with myself today, lots of developments, our so

> called tube that needed to come from America came from Gloucester

in

> the UK, so I dont know what all the hype was about, they do come

> from America but we must import them , no big deal, except someone

> mentioned the courier service was an extra £28.00, the doctor saw

my

> face, and said 'oh no worries just order it' Darren jokingly said

do

> you want my debit card!!

>

> Amelie was taken to radiography where under the xray and barium

they

> passed it from the stomach to the jejunum. She managed to

struggle,

> which was sad but good it means she is getting back to her little

> ways, she hasnt been starved of o2 ( at least I dont think so) ,

> because today she gave a little lob sided smile and chuckle,it was

> just like before the old Amelie I was delighted, despite the fact

> she has lost weight and does look frail.

>

> We did get to speak to the top team Bianchis guy Mr Morabito & Mrs

> Kauffman, and discussed Amelies options in depth, In view of the

> respiratory arrest and two cardiac arrests we are going with the

> dissociation, I know some of you will be cringing, but we dont

want

> the resposibility of risking a repeat nissen and another GA and it

> fail, and he gave us the percentage for all nissens not just

charge

> nissens, and if it fails she will go down hill, rapidly, so we

think

> better to do the dissociation and have done with, the stomach will

> not be able to regurgitate back up the oesophagus, and this will

> give Amelie the chance she needs to cure the state her lungs are

in.

>

> There will not be a rush to do this they need her lungs stronger

for

> the GA, they are hoping the j tube will keep the weight on her and

> she hopefully wont reflux during this time, so the lungs in theory

> should improve, however!!! if she gets 'dumping syndrome' where I

> think the food doesnt get absorbed in the ileum, then the surgery

> will be sone sooner rather than later, so this next week they will

> weigh and observe what she does next, and keep the vigourous

physio

> up, she is better in her self not as weepy, which is wonderful for

> us as parents.

>

> Whilst we are not looking forward to the risks of the surgery, we

> feel its the only way forward, and to hopefully get her home, even

> better it would be fantastic if the j tube worked and she needed

no

> surgery but I doubt this, as she had one before for 5 days and she

> had chronic diarrhoea.

>

> fingers crossed

> Lesley Mum to le Olivia Fleur and AMELIE WHO WILL BE 1 A

> BIRTHDAY GIRLIE ON TUESDAY 10TH JANUARY 2006- WHAT A BLOODY YEAR!!

> at least shes still here!!!!!!

>

[Guest guest]

Lesley,

I don't cringe at the dissociation; after a bit of reading, it actually makes

quite a bit of sense and from all I've read, does not have to be permanent. If

it's the best decision for Amelie's health then so be it. I can't believe she

will be one already on Tuesday! Give her a big birthday hug from Kennedy!

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

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

[Guest guest]

glad you can see the light--oh my what a trip--and it's not over yet!!

happy birthday and big hugs from the halloran's

Amelie - at last I can see the light!!!!!

Dear Charge clan

I feel at peace with myself today, lots of developments, our so

called tube that needed to come from America came from Gloucester in

the UK, so I dont know what all the hype was about, they do come

from America but we must import them , no big deal, except someone

mentioned the courier service was an extra £28.00, the doctor saw my

face, and said 'oh no worries just order it' Darren jokingly said do

you want my debit card!!

Amelie was taken to radiography where under the xray and barium they

passed it from the stomach to the jejunum. She managed to struggle,

which was sad but good it means she is getting back to her little

ways, she hasnt been starved of o2 ( at least I dont think so) ,

because today she gave a little lob sided smile and chuckle,it was

just like before the old Amelie I was delighted, despite the fact

she has lost weight and does look frail.

We did get to speak to the top team Bianchis guy Mr Morabito & Mrs

Kauffman, and discussed Amelies options in depth, In view of the

respiratory arrest and two cardiac arrests we are going with the

dissociation, I know some of you will be cringing, but we dont want

the resposibility of risking a repeat nissen and another GA and it

fail, and he gave us the percentage for all nissens not just charge

nissens, and if it fails she will go down hill, rapidly, so we think

better to do the dissociation and have done with, the stomach will

not be able to regurgitate back up the oesophagus, and this will

give Amelie the chance she needs to cure the state her lungs are in.

There will not be a rush to do this they need her lungs stronger for

the GA, they are hoping the j tube will keep the weight on her and

she hopefully wont reflux during this time, so the lungs in theory

should improve, however!!! if she gets 'dumping syndrome' where I

think the food doesnt get absorbed in the ileum, then the surgery

will be sone sooner rather than later, so this next week they will

weigh and observe what she does next, and keep the vigourous physio

up, she is better in her self not as weepy, which is wonderful for

us as parents.

Whilst we are not looking forward to the risks of the surgery, we

feel its the only way forward, and to hopefully get her home, even

better it would be fantastic if the j tube worked and she needed no

surgery but I doubt this, as she had one before for 5 days and she

had chronic diarrhoea.

fingers crossed

Lesley Mum to le Olivia Fleur and AMELIE WHO WILL BE 1 A

BIRTHDAY GIRLIE ON TUESDAY 10TH JANUARY 2006- WHAT A BLOODY YEAR!!

at least shes still here!!!!!!

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]

I probably won't be here to wish Amelie a happy birthday on tuesday so i

wanted to send a happy birthday to her now... Congratulations on making it

this far! just think, in another year or two you'll be right up there with

the other parents on this list asking about behaviors and reminding new

parents that there is always hope

as for her birthday, hopefully it will be a comfortable happy safe day and

perhaps there will even be pictures for mommy to post later when she has

time (hint hint) ;-)

i may not post much, but i follow the progress of the families of this list

very closely... right now Amelie posts are among those marked read-me-first

there's a lot of people out there rooting for you're little girl Lesley...

just wanted to remind ya

oh yeah and........

*Happy Birthday Amelie!!!!!!!*

Cole

>

> Dear Charge clan

>

> I feel at peace with myself today, lots of developments, our so

> called tube that needed to come from America came from Gloucester in

> the UK, so I dont know what all the hype was about, they do come

> from America but we must import them , no big deal, except someone

> mentioned the courier service was an extra £28.00, the doctor saw my

> face, and said 'oh no worries just order it' Darren jokingly said do

> you want my debit card!!

>

> Amelie was taken to radiography where under the xray and barium they

> passed it from the stomach to the jejunum. She managed to struggle,

> which was sad but good it means she is getting back to her little

> ways, she hasnt been starved of o2 ( at least I dont think so) ,

> because today she gave a little lob sided smile and chuckle,it was

> just like before the old Amelie I was delighted, despite the fact

> she has lost weight and does look frail.

>

> We did get to speak to the top team Bianchis guy Mr Morabito & Mrs

> Kauffman, and discussed Amelies options in depth, In view of the

> respiratory arrest and two cardiac arrests we are going with the

> dissociation, I know some of you will be cringing, but we dont want

> the resposibility of risking a repeat nissen and another GA and it

> fail, and he gave us the percentage for all nissens not just charge

> nissens, and if it fails she will go down hill, rapidly, so we think

> better to do the dissociation and have done with, the stomach will

> not be able to regurgitate back up the oesophagus, and this will

> give Amelie the chance she needs to cure the state her lungs are in.

>

> There will not be a rush to do this they need her lungs stronger for

> the GA, they are hoping the j tube will keep the weight on her and

> she hopefully wont reflux during this time, so the lungs in theory

> should improve, however!!! if she gets 'dumping syndrome' where I

> think the food doesnt get absorbed in the ileum, then the surgery

> will be sone sooner rather than later, so this next week they will

> weigh and observe what she does next, and keep the vigourous physio

> up, she is better in her self not as weepy, which is wonderful for

> us as parents.

>

> Whilst we are not looking forward to the risks of the surgery, we

> feel its the only way forward, and to hopefully get her home, even

> better it would be fantastic if the j tube worked and she needed no

> surgery but I doubt this, as she had one before for 5 days and she

> had chronic diarrhoea.

>

> fingers crossed

> Lesley Mum to le Olivia Fleur and AMELIE WHO WILL BE 1 A

> BIRTHDAY GIRLIE ON TUESDAY 10TH JANUARY 2006- WHAT A BLOODY YEAR!!

> at least shes still here!!!!!!

>

>

>

>

>

>

> 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,

Well done to you and Darren for maintaining your sanity through this and

HOORAY for Amelie. Hope there is lots of good news to make her birthday

that little bit more special.

Oh, and I did chuckle at Darren's quip about the debit card! How to make

them cringe with embarassment. Go parents!!!

Flo

[Guest guest]

Lesley-

What a wild ride. I know the disassociation is not a fun option to choose,

but it does sound like the right thing for your situation. It's really a

blessing that we have options such as these. Of course, I hope her lungs

improve by leaps and bounds with the J-tube, that she plumps right up, and

quits refluxing by some quirk of maturity (she is having that big birthday,

after all...). But it's good that you're ready for the next step when the

time is right to move forward with it. In the meantime, I hope that her

birthday is a good day so you can celebrate having come through this year

intact. Aubrie's first birthday was a melancholy celebration too. Probably

most of the first birthday's are -- just my guess. That first year is just

so crazy and overwhelming. Even when things aren't as critical as have been

with Amelie, we all feel like we've been thru a miracle to have made it one

year on this path.

So on Jan 10, we'll all be celebrating with you and contemplating all that

you've been thru in such a short time. By next year, lil' Amelie will be

home, enjoying a real party...

Hugs

Michele W

Aubrie's mom

[Guest guest]

LOL lesly i love the humour in ur family great shes doing bertter marion

read this to i may of told you both botu my dumping well hwo we mannage it

is just not to much of particular stuff i think oh well hugs for amelie and

to you to ellen inaus

>

> Lesley-

> What a wild ride. I know the disassociation is not a fun option to

> choose,

> but it does sound like the right thing for your situation. It's really a

> blessing that we have options such as these. Of course, I hope her lungs

> improve by leaps and bounds with the J-tube, that she plumps right up, and

> quits refluxing by some quirk of maturity (she is having that big

> birthday,

> after all...). But it's good that you're ready for the next step when the

> time is right to move forward with it. In the meantime, I hope that her

> birthday is a good day so you can celebrate having come through this year

> intact. Aubrie's first birthday was a melancholy celebration

> too. Probably

> most of the first birthday's are -- just my guess. That first year is

> just

> so crazy and overwhelming. Even when things aren't as critical as have

> been

> with Amelie, we all feel like we've been thru a miracle to have made it

> one

> year on this path.

>

> So on Jan 10, we'll all be celebrating with you and contemplating all that

> you've been thru in such a short time. By next year, lil' Amelie will be

> home, enjoying a real party...

>

> Hugs

> Michele W

> Aubrie's mom

>

>

>

>

> 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,

Finally some good news and some answers to all your questions.

Don't worry about all of us cringing about the disassociation, while

nobody wishes that upon their child we understand the decision

behind it and support your decision.

Congratulations on making the one year mark next week. It is a

milestone for you as a family as well as for Amelie. I remember

thinking I reached a kind of finish line when Makenna's first

birthday came. What a race! A race to keep these wonderful

children here with us, a race to find out the one thing that will

help them turn that cornor, a race to start early intervention, a

race to find a way to communcate, and the list goes on and on.

Heres to making it through that first year and to having smooth

sailing through the second. It really does get easier and easier,

medically speaking.

Thinking of you,

katie, mom to Makenna almost 5!!!!

>

> Dear Charge clan

>

> I feel at peace with myself today, lots of developments, our so

> called tube that needed to come from America came from Gloucester

in

> the UK, so I dont know what all the hype was about, they do come

> from America but we must import them , no big deal, except someone

> mentioned the courier service was an extra £28.00, the doctor saw

my

> face, and said 'oh no worries just order it' Darren jokingly said

do

> you want my debit card!!

>

> Amelie was taken to radiography where under the xray and barium

they

> passed it from the stomach to the jejunum. She managed to

struggle,

> which was sad but good it means she is getting back to her little

> ways, she hasnt been starved of o2 ( at least I dont think so) ,

> because today she gave a little lob sided smile and chuckle,it was

> just like before the old Amelie I was delighted, despite the fact

> she has lost weight and does look frail.

>

> We did get to speak to the top team Bianchis guy Mr Morabito & Mrs

> Kauffman, and discussed Amelies options in depth, In view of the

> respiratory arrest and two cardiac arrests we are going with the

> dissociation, I know some of you will be cringing, but we dont

want

> the resposibility of risking a repeat nissen and another GA and it

> fail, and he gave us the percentage for all nissens not just

charge

> nissens, and if it fails she will go down hill, rapidly, so we

think

> better to do the dissociation and have done with, the stomach will

> not be able to regurgitate back up the oesophagus, and this will

> give Amelie the chance she needs to cure the state her lungs are

in.

>

> There will not be a rush to do this they need her lungs stronger

for

> the GA, they are hoping the j tube will keep the weight on her and

> she hopefully wont reflux during this time, so the lungs in theory

> should improve, however!!! if she gets 'dumping syndrome' where I

> think the food doesnt get absorbed in the ileum, then the surgery

> will be sone sooner rather than later, so this next week they will

> weigh and observe what she does next, and keep the vigourous

physio

> up, she is better in her self not as weepy, which is wonderful for

> us as parents.

>

> Whilst we are not looking forward to the risks of the surgery, we

> feel its the only way forward, and to hopefully get her home, even

> better it would be fantastic if the j tube worked and she needed

no

> surgery but I doubt this, as she had one before for 5 days and she

> had chronic diarrhoea.

>

> fingers crossed

> Lesley Mum to le Olivia Fleur and AMELIE WHO WILL BE 1 A

> BIRTHDAY GIRLIE ON TUESDAY 10TH JANUARY 2006- WHAT A BLOODY YEAR!!

> at least shes still here!!!!!!

>

[Guest guest]

Lesley,

This is a great update. It all sounds like the tide has turned and the road

you are traveling will be more smooth. Sure there are those roadbumps in life

but starting to go forward is great.

I just don't know how you have the time to update us on everything but I am

so glad that you do. It feels like we are right along there with you.

Take care.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to