Surgery scheduled - friendly only please

Victorias mom

Victorias mom

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We met the surgeon at the implant center last week and he told us Victoria is a perfect candidate for the implant. She has a profound hearing loss and is receiving little benefit from hearing aids. She has had the hearing aids for 6 months and is responding to some sounds but only at high decibals and low frequency sounds.

We scheduled the surgery for January 31st. She will be 1 year old on January 27th. Everyone involved in this decision (surgeon, Implant Center, School for the deaf that she attends, me and my husband) all agree there is no reason to wait on this surgery. With hearing aids, she will never hear enough to develop spoken language.

We are excited and nervous about the surgery. As most of you know, this is not an easy decision.

Right now she is 10 months old and we have been learning sign language for about 5 months. She signs sleep, milk, want, mommy, daddy and her brother's name sign. Some are more clearer than others, but she knows how to communicate what she wants. We will continue to use sign up until the implant and also after it. I would like her to know as much sign language as possible, because I think it's important for her to have a way to communicate without the implant on. We are looking forward to the day she can hear us and speak to us!

I'm sure I will be asking you all a lot of questions as time goes by!
 
YAY for keeping on with the Sign!
Just a word of advice.Victoria may not be able to hear REALLY well with the implant. Like she might be able to hear a small percentage of speech, but not do as well as someone who could hear some speech with hearing aids, or a kid who had some hearing for a few months. Performance with the implant is just so varied......it's really hard to tell how well a kid will be able to hear with it. Just so you don't get disappointed in the possible end results, look at the CI as something that's a wildcard for which everything is possible, but nothing is promised.
 
Glad to hear you all considered all the issues. That is always a good sign. Wishing the best of success in Victoria's endeavors.
 
deafdyke said:
YAY for keeping on with the Sign!
Just a word of advice.Victoria may not be able to hear REALLY well with the implant. Like she might be able to hear a small percentage of speech, but not do as well as someone who could hear some speech with hearing aids, or a kid who had some hearing for a few months. Performance with the implant is just so varied......it's really hard to tell how well a kid will be able to hear with it. Just so you don't get disappointed in the possible end results, look at the CI as something that's a wildcard for which everything is possible, but nothing is promised.
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I am definelty keeping an open mind about this. I know nothing is perfect. We will help her get the most out of it she can. I hope she does wonderful with it, but if she doesn't then she doesn't. She will have a wonderful life - hearing or not... I will make sure of that!
 
That's wonderful! I know how you're feeling right now...excited but scared at the same time. If you want I can e-mail you some pics of Emma right after surgery so you kind of know what to expect her to look like. Just Pm me if you're interested and I'd be happy to share. Emma was 15 months when she was implanted and just starting to walk...I remember being so scared when she would walk right after surgery..she was so determined and I was so scared she would fall and break her staples!!! It's so good that she is signing too....they get so frustrated if they can't communicate and that makes it so much better. Again..I'm so happy for you!!!!
 
Victorias mom said:
We met the surgeon at the implant center last week and he told us Victoria is a perfect candidate for the implant. She has a profound hearing loss and is receiving little benefit from hearing aids. She has had the hearing aids for 6 months and is responding to some sounds but only at high decibals and low frequency sounds.

We scheduled the surgery for January 31st. She will be 1 year old on January 27th. Everyone involved in this decision (surgeon, Implant Center, School for the deaf that she attends, me and my husband) all agree there is no reason to wait on this surgery. With hearing aids, she will never hear enough to develop spoken language.

We are excited and nervous about the surgery. As most of you know, this is not an easy decision.

Right now she is 10 months old and we have been learning sign language for about 5 months. She signs sleep, milk, want, mommy, daddy and her brother's name sign. Some are more clearer than others, but she knows how to communicate what she wants. We will continue to use sign up until the implant and also after it. I would like her to know as much sign language as possible, because I think it's important for her to have a way to communicate without the implant on. We are looking forward to the day she can hear us and speak to us!

I'm sure I will be asking you all a lot of questions as time goes by!
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I wish you luck with your daughter's surgery, and it looks as if you've got all bases covered.
 
Glad that you have a way to move forward and I'm sure that you will be throwing a lovely 1st birthday for her before surgery. Wow you'll be busy!

Best wishes with everything and I know I've said this before but Victoria is soooo cute!
 
COngrats!!!
As you know, the younger she is implanted, the better the success rates are. Be optimistic! Yes there are very, very, few childrent that the CI is not considered a success. You will know this very soon after the surgery. After Lillys surgery, we had an audiological report before she came out of the recovery room. After the CI is implanted, and before the incisi0on is closed up, the audi conducts a computer test to see if the CI is functioning properly, they can also tell if teh audi nerves are being stimulated by the CI. This is a very good indication of how well she will hear with the CI.
SHe will be fine! After surgery, she should be a little swollen, with a pressure bandage around her head. The inmportant thing is to keeo her from hitting her head for the first few weeks. I wanted to duct tape a pillow around Lillys head!

If you have any concerns, or questions please feel free to PM me or Email me.
 
Thank you to everyone who replied.

R2D2 - yes I think it will be a very busy couple of months!

MomtoIsandEm - I will definetly PM you.

Lillys Dad - Thanks for the details! Hopefully she will start walking after the surgery!

Since Victoria is deaf due to Connexin 26, we have been told those kids do the best with implants. I would say I am being mostly optimistic about her results. I see so many kids doing great, so there isn't any reason why Victoria would be different. On the other hand, I want to also keep in mind every kid is different and results vary. Victoria has many things in her favor, so I have been told she should do great! Plus she will have surgery at an implant center in New York City, and they are highly recommended by so many people. We really feel comfortable with them.

I can't wait, this is going to be a whole new chapter in her life.
 
OMG, I am so excited for you!!!!!

We've compared notes before - and Victoria and Erin are SO similar.

I will be thinking of you and Victoria! Please keep us posted on how things are going!

PM or e-mail me if you have any questions... and check out our blog if you haven't already. I have a pictorial of surgery day and video of her activation day a month later.

Yay, Victoria!

Erin Toes and her Cochler Implant Journey
 
momtotoes said:
OMG, I am so excited for you!!!!!

We've compared notes before - and Victoria and Erin are SO similar.

I will be thinking of you and Victoria! Please keep us posted on how things are going!

PM or e-mail me if you have any questions... and check out our blog if you haven't already. I have a pictorial of surgery day and video of her activation day a month later.

Yay, Victoria!

Erin Toes and her Cochler Implant Journey
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They really are similiar, it's cute!! I look at your blog all the time. She sounds like she is doing so well. I haven't looked this week to see if anything is new, but I will be checking it out later. Thanks for sharing it!
 
Sorry this is the first time I have read this thread. We have been visiting family in Kentucky for a few days. Congrats! That is awesome. We will keep Victoria in our thoughts and prayers! She will do fine. Kids are more resiliant than we think. The day after Isaac's surgery, he took his bandage off, handed it to me and signed "thank you" The time leading up to the surgery is the longest time that I can remember....but it will be here before you know it. Good luck!
 
Isaacsmom said:
Sorry this is the first time I have read this thread. We have been visiting family in Kentucky for a few days. Congrats! That is awesome. We will keep Victoria in our thoughts and prayers! She will do fine. Kids are more resiliant than we think. The day after Isaac's surgery, he took his bandage off, handed it to me and signed "thank you" The time leading up to the surgery is the longest time that I can remember....but it will be here before you know it. Good luck!
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That's ok, I haven't been on here much lately either.

Thanks. I told a few people about what Isaac did with signing thank you after he took the bandage off. That is so cute!! It also makes me feel good that so many people say the kids feel pretty good after surgery. She gets to stay the night, so that makes me feel better too!

I just found out they needed to changed the surgery date. It's only a week later, so it will be February 7th.
 
Wow congrats and good luck, I've had my implant about 5 years now. It's a journey I am sure you and your daughter will embrace and enjoy.....
 
V's Mom, that is great that she will get to spend the night. :) I know it would have eased my mind to be with experts the first night.

I am very confident that by the next morning you will be dying to go home. I know Victoria is going to do beautifully!
 
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