Robin Ci info

[Guest guest]

Hi Robin,

Please feel free to ask me anything. It's nice to answers some questions for a

change instead of always being the asker. Peyton is going to have his CI surgery

at Children's Hospital in Detroit. Dr. walter Belenky is his surgeon. In fact we

have surgery scheduled for Dec. 8.

I was told at our CI consult that his aided tests really mean nothing. It's the

loss that he has, his speech/lang. development and his unaided test. Peyton was

approved because of his speech delay. he was tested at about a 2.3 year old

level. He is almost 6. He also has been wearing powerful aids for 4 years. He

had extensive AVT. We believe that's why he does so well in soundbooth testing

He will mimic anything that we ask, he always points to his ears and says did

you hear that? He truly is an excellent listener. But that doesn't mean that he

can hear speech. He misses most of the consonants in the speech banana. He is

able to hear and repeat all ling sounds, and all vowels. Since his hearing has

dropped so have some of his words. His understanding is also very poor. he can

follow simple directions but is not able to have a conversation. He asks for

things, and tells us things but uses simple phrases and has never progressed

past 3 sentence words except for a few times. He wears an FM at school and

doesn't hear any better with it at all. I guess what I'm trying to say is just

because he is able to detect sound at 20-25db's doesn't mean he is able to hear

speech at same level. I think its just the sound he responds too. In noisy

situations he has awful time, and does much better one on one. That is why we

went for consult . Also when I called and spoke with the Audi she told me same

thing yours said. He might not qualify with his aided levels. When they tested

him he was approved immediately. I'm not sure if it matters but the CI team Dr.

is also his ENT. He was diagnosed at Children's and had most of his audiograms

don't there also. I did bring 2 audiograms that where done elsewhere along at

consult. They all showed same results within 5db's.

Because his aided tests have always been so hi we really believed he would be

able to speak and hear well enough with aids. His Dr. and Audi felt the same

way. When he started school the HI teacher thought I was crazy when I told her

what his aided tests where. This was because of his poor speech. When she saw

them she was amazed. He should----(and that's the magic word) have been doing

much better aided then he was. For what ever reason he never did. I have beat

myself up a million times for for not being more forceful about his speech

delay. I let all the experts tell me he would be able to speak and understand

based on the audiograms. I would definitely seek a 2nd opinion at a CI clinic. A

CI might not be something you choose to do or might not be an option but I would

think with your daughter losing more hearing its worth checking into. Don't wait

as long as I did and lose so much precious time just because of aided tests. I

can assure you for us it really meant nothing in the long run. Good Luck and

contact me off list if you would like. I would be more then happy to speak with

you over the phone or thru email if you prefer.