Ashley's CI surgery

ashleysmommy

ashleysmommy

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I appreciate all views about CI and the surgery. I know we will have ups and downs. Only Ashley and the good Lord above know how this will turn out. We are cautiously optimistic. Ashley has never followed any rule books. She has been writing her own from birth. The doctors told us she only had a 10 to 20% chance to even make it. She showed them!!!! She has been breaking rules and defying odds from day one so we only expect her to blossom and grow from this. I am willing to take a chance so my little girl can have as normal a life as possible. (What ever normal is anyway) I am not saying that not being able to hear is not normal or a bad thing but I know her life will be easier if she has the gift of hearing as well as seeing. We have had to fight for both. She is a very spunky girl with lots of attitude so she will not give up and we will help her in any way we can along the way. All opinions are appreciated even the ones that are not so positive (DD'S). We have to take the bad with the good and do the best we can. I will keep everyone posted on how we are doing. Thanks again for the feedback. Keep it coming! It helps to have so many people to talk to.
Ashley's Mommy
 
Good luck with everything. She has a great mom to help her out, she will do great.

My daughters surgery is scheduled for February 7th, and she will be 1 the end of January.

How old did you say your daughter is? Sounds like your daughter has been through a lot in her little life. Hopefully this will be the turning point for her!
 
Thanks for all of the well wishes. Good luck to all as well. Ashley is 16 month old 25 week preemie. She was 15 ounces and 10 inches long at birth. She has had a long fight but remained a champion all the way.
 
Best wishes with the process with your little fighter. You really must be looking forward to the day when you and Ashley stop seeing all the doctors and just sit back and enjoy life! I love her name by the way :)
 
Best of success to the upcoming surgery. Being the fighter she is, I'm sure she will do well.
 
Ashleys mommy, very well said! There is nothing more I could possibly add to your statement! You little girl sounds like a little fighter! As long as she keeps that attitude there is nothing that can stop her. And, after reading your above message, I think I know where she got that attitude from! The fighting attitude that you seem to have passed on to her may be one of the best things in the world!!!!!
 
Definitly.................and I mean even if she only has SOME access to sound, it'll help her. What kind of delays does she have if you don't mind me asking?
Just remember that with her other issues, she still has "everything possible but nothing promised." Definitly don't listen to the doctors......they are NEGATIVE and really don't know anything!
 
Lillys dad said:
Ashleys mommy, very well said! There is nothing more I could possibly add to your statement! You little girl sounds like a little fighter! As long as she keeps that attitude there is nothing that can stop her. And, after reading your above message, I think I know where she got that attitude from! The fighting attitude that you seem to have passed on to her may be one of the best things in the world!!!!!
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Jer, you stated that quite accurately! Ashley and her mommy, :rockon:
 
deafdyke said:
Definitly.................and I mean even if she only has SOME access to sound, it'll help her. What kind of delays does she have if you don't mind me asking?
Just remember that with her other issues, she still has "everything possible but nothing promised." Definitly don't listen to the doctors......they are NEGATIVE and really don't know anything!
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Doctors are negative and really dont know anything???!!!!!
Wow, you've said some things that I dont agree with but that takes the cake!
Your statement has proved that you are anti-CI. I cannot take any of your CI advice into consideration from this point forward. That statement is idiotic at best.
Doctors are a wonderful source of info.. Also, the doctors are negative. This statement shows me that you have never even spoken to an ENT specialist, and had a serious conversation about CI. About the closest a doctor will get to being "negative" is the fact that they are cautious. While a doctor will not tell you anything negative or positive, they explain the possibile outcome of the surgery and let you make the decision, providing that you are a candidate.


Wow, you really showed your true colors with that one.........
 
The doctors do come off negative, but they have to give you things straight. If they sugar coated everything and something went wrong it would be more devastating than if they had been straight and you knew the possibility existed of problems. I am glad they have always been straight with me. You may not like what they say. It is up to you what you do with it. I knew Ashley had to fight for her life when she was born. I knew she would have difficulties along the road. It helped me stay strong and focused to help her fight and grow.
 
I agree that doctors can come off negative. My dad can come off pretty negative as he's a retired M.D.
 
Just like people who talk about CIs, but don't have them.
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Liliysdad and Hear Again, I am NOT talking about CIs. I know I don't have them....... but I do read the research. While there are quite a few hoh functioning kids with CIs, it really is a chicken or the egg question, why they can hear as well as they can. There are just SO many variables. I don't deny that there are quite a few kids who are pretty much "almost hearing" or who are truely functionally hoh with the CIs. But, even scienctists and experts really don't know why one person can be functionally hoh with a CI, whereas another person might only get enviormental sounds. Hey, they don't know why some profound-severe folks get a lot of benifit from aids, and others don't!
Lilysdad, I was speaking about doctors who are extremely negative about kids who have rare syndromes or who have cerebal palsy or who are preemies. You're VERY lucky not to deal with additional needs.
I know somewhat, what Ashely's mom is going through......not with CI but with her daughter's other issues. I have a rare genetic syndrome myself.....and the doctors were VERY VERY pessimistic. Like they don't want to admit that they don't have all the answers, so they tend to be very negative about kids' chances for functioning or whatever.
 
deafskeptic said:
I agree that doctors can come off negative. My dad can come off pretty negative as he's a retired M.D.
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My mom is not always very positive about things. She says its because she loves me. I guess that is why they call it tough love. I just take what she says and move on. If I know something is good for me I strive to make it happen. You should do the same.
 
I know how hard it can be to stay positive first hand. Try to remember what you are fighting for and the prize at the end.
 
deafdyke said:
Liliysdad and Hear Again, I am NOT talking about CIs. I know I don't have them....... but I do read the research. While there are quite a few hoh functioning kids with CIs, it really is a chicken or the egg question, why they can hear as well as they can. There are just SO many variables. I don't deny that there are quite a few kids who are pretty much "almost hearing" or who are truely functionally hoh with the CIs. But, even scienctists and experts really don't know why one person can be functionally hoh with a CI, whereas another person might only get enviormental sounds. Hey, they don't know why some profound-severe folks get a lot of benifit from aids, and others don't!
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DD,

That may be true, but your posts on AD seem to come across as if you are discouraging parents or adults from getting CIs. Even if a child or adult is only able to hear environmental sounds with a CI, they are right back where they started and haven't lost anything. However, if they opt for the CI and are able to function as a "hearing" person or someone who is hard of hearing, they've gained so much more than they ever could with HAs. I just wish you would be a little more optimistic and encouraging about CIs -- that's all.

What do you mean by "almost hearing?"
 
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