Any other parents of children with hearing aids?

[maybenumber3]

Im just wondering how your family copes. does your child like them?? is the cholear implant an option for you? ..... you know all the usual stuff lol? i dont really know any other parents to really talk to about it. we do not have any issues just looking for a buddy kinda... my son was born at 24 weeks and has cholear nurve damage.. he is 4 now and loves his "ears" seems to do really well.

 

[kit10grl]

DD is partially aided at the minute. We have BTE aids. Hearing loss is a huge part of her syndrome but can present in so many different ways. Some children have no hearing nerve or inner ear structure at all. Some are perfectly fine and have no issues. DD has been assessed many times, she also has loud breathing due to other issues so the newborn hearing test was no use for her. She had ABR testing a lot of times too. We were initially told due to a mixed hearing loss she couldn't hear the required levels to hear speech but that it was probably only on certain pitches that it was really hard for her. That is when she was aided. At first it was fine but then over a course of months she got really good at grabbing the aids out of her ears. She began teetinhig and would chew on them. One time I caught her after she pulled the mould off the aid and almost swallowed it I was thumping her on the back and she vomited it out. Since then we have to be so careful about using them. We have to take them out if we cant be right there with her which is inconvenient in the car or when I need to pee etc. She was reassessed during this time as she no longer had an NG tube is as often which helped reduce the fluid buildup in her ears. They found at this point she could hear speech levels but not quieter noises. She was being admitted for an ENT surgery for something else so they agreed to fit grommets into her ears at the same time in the hopes that she can go wihout the aids for at least a while. They were fitted two weeks ago and we are due back for further testing in a week.

Its possible that she would be considered for a BAHA in the future and a lot of children with her syndrome do opt for a cochlear implant but based on what ive read the increased hearing in our case would only be minimal and therefore not worth the risk of the operation for us at the moment im afraid