Re: We are home

April 2, 2006

Flo,

reminds me alot of MacKenzie. The day after she was implanted she

was standing on her head and doing flips. Glad everything went well and I

can't wait for updates on how she's doing. One word of advice, PATIENCE.

It's going to take her alot longer to derive the same benefits as typical

deaf children, but then BAM, one day it just clicks. Good luck.

Jeanie Colp

mom to MacKenzie 7 CHARGE, Tyler 14 & Zachary 11

April 2, 2006

Yes great news, just hope she doesnt knock it, last thing you need,

I think Amelie at some stage will have implants, only the hearing

thing for us is disasterous, no one seems to be able to do a great

deal, still waiting for another hearing test, and never had any

aids!! although I remember s didnt do anything for her, so

maybe its no loss at the minute, will be interested to hear how she

progresses.

take care Les x

>

> Flo & Simon,

> I'm so pleased to hear that 's surgery went well and she's

bouncing

> about again

> I can't wait to hear progress reports about the implant.

> Take care

>

> Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

> Scotland

>

April 2, 2006

Yes great news, just hope she doesnt knock it, last thing you need,

I think Amelie at some stage will have implants, only the hearing

thing for us is disasterous, no one seems to be able to do a great

deal, still waiting for another hearing test, and never had any

aids!! although I remember s didnt do anything for her, so

maybe its no loss at the minute, will be interested to hear how she

progresses.

take care Les x

>

> Flo & Simon,

> I'm so pleased to hear that 's surgery went well and she's

bouncing

> about again

> I can't wait to hear progress reports about the implant.

> Take care

>

> Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

> Scotland

>

April 2, 2006

Glad you are home, Flo, and that everything went well.

I think I know how you are feeling about the surgery. It's not one that you

see or receives any direct benefits from right away, so there's that

piece of it. And then, if you're like me, you are left wondering if you did the

right thing--if you've made a decision to do something that possibly your child

wouldn't have chosen to do for herself if she had that capability. I wonder

about that all the time with . But I have to say that I'm OK with the

choice we made, especially when I see her benefit from the CI a little at a

time, and I know that down the road, if she gets to a point where she can make

the choice herself and doesn't want to use it anymore, I'll be fine with that

decision too. It really doesn't matter to me which world she chooses to live

in--the hearing or the deaf--as long as she's part of my world and is happy.

Sorry to be so sappy this morning. Just watched 's slide show of

and can't stop crying now! :-)

Let us know how the initial stim goes in a few weeks. When does get

turned on?

Hugs,

, mom to (4)

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

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

April 3, 2006

Hi All,

Thank you for those words of encouragement, support and well wishes. I have

to say I did feel awful yesterday about the whole implant thing(and Simon

didn't feel great either) but today, it doesn't all feel bleak. I couldn't

sleep last night and after a few tears I decided to return to the computer

and e-mail a few people. Obviously a good therapy strategy as I feel much

better today and so, I think, does Simon. As for , she is sweetly

oblivious to any angst, bumping into every door, bouncing on her bed, doing

head stands and expecting me to play the holding her upside down game with

her. I don't think so!!!

,

I was particularly touched by your account. It certainly made me feel less

insane and I can certainly relate to every aspect of it - do not apologise

about being sappy at all. I was unable to see beyond the little bump on her

little shaved bit of head and the fact that the stupid thing may not work

and will it compromise her health and will she hate us for it etc etc.

Today it doesn't seem that bad but I am sure it will all come back another

time. Hmm, perhaps it is waiting for switch on. That will be 27th April.

At this time, all we know is that 14 out of the 22 electrodes gave a

positive response when tested in theatre but what this means in real terms,

I have no idea. We have an appt with the implant sientist team in 2 weeks

so perhaps we may be a little wiser (or not, who knows?). We also have a

workshop this week for listening exercises etc so the tough stuff is already

beginning.

Surgeon's words after the surgery - " nothing was where it was supposed to

be " . Simon's " told you so " post is entirely appropriate. We did try to

tell him and he is not exactly experienced in implanting children with

CHARGE (J was the 2nd) but to his credit, he did at least look a little meek

after the event. He did well too to do the whole thing in 3-1/2 hours

considering he couldn't find the cochlea initially and the facial nerve was

of course buried in a thicker than he expected bone etc etc. I do raise my

hat to him though, he brought my child back still intact! Oh, totally the

best bit was meeting the anaethetist. He was the same guy who looked after

for extensive heart surgery for 7 hours 5 years ago. Surely if he

could do 7 hours so well while she was so tiny, he could do however long it

took for a CI! The things that reassure us, eh?

, I was looking at the list of questions you kindly sent me ages ago

and thought that most of them will really be so helpful now (a lot already

have been fantastically so in just deciding to implant). You are a star. I

will try to e-you and others with all the boring stuff off list so as not to

bore the heck out of everyone else as time goes on in the post-implant

sagas.

(, on an aside, I read 's story on the cleft site. Wow, what a

star! I have seen her photo on the CHARGE site and thought " what a

cracker " . Now seeing what she went through I think, " little hero " . I can

see how you are so proud of her as we all are of our little fighters).

Once more, thanks everyone for your understanding and encouragement.

I'll be back...........

Flo

April 3, 2006

Yes, what a cracker is right, Flo! Every time you post of 's romps in

the night, headstands with the CI bandage on, etc., she reminds me so much of

! Did I ever tell you that the first night we were home from CI surgery,

she managed to rip her whole head dressing off in a split second? We were

fixing dinner, and my husband was heading out the back door to put something on

the grill, and I headed into the kitchen to get something, and I no sooner

turned my back on and turned back around to see her whole head dressing

lying in the floor next to her--and she was just gleefully continuing with her

playing! So, here we trekked out in a thunderstorm, on the 4th of July, with

people setting off fireworks in various neighborhoods, and drove 30 minutes to

the ER at Children's Hospital--and then had to wait two hours to find a doctor

on call who could replace it. What adventures that child puts us through! :-)

Glad you and Simon are feeling better about the surgery. I'm sure you'll have

ups and downs throughout the whole process, but just keep the faith and hang in

there for the long term. After reading 's cleft story, I'm sure you can

see how " in the dark " we were when we first got her CI--all the talk about

sending her to an all-oral school and the hopes we had for her suddenly taking

off and becoming verbal. Boy, were our heads in the sand just two years ago!

At least you've done your homework and have realistic expectations of the CI

from the outset. I went through a huge realization and grief period to get to

the acceptance point that I'm at today.

Can't wait to hear about 's turn-on! Will mark 4/27 on my calendar.

Hugs to you,

, mom to (4)

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

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

April 3, 2006