auditory neuropathy... anyone's LO have it? long, but PLEASE read :-(

Hi ladies... I've never posted before. I've just always read what interested me/caught my eye. So... hi! I have a 3 month old son named Hunter. I just found out yesterday that he has auditory neuropathy. I had been noticing that he wasn't really responding to many sounds that his toys make. I know he's a bit young to always be able to find/look directly to the source of the sound, but he never even seemed to look around trying to find it. He also hardly ever made any kind of facial expression (widening of the eyes, etc) showing that he had heard something. For example, one evening when I was picking him up from his grandparents after I had been working all day I walked into the room and was about three feet from him, but he hadnt looked in my direction yet, so I said "Hi Hunter. What are you doing?" I got NOTHING in response. He didn't start looking around for me. He didn't get excited. He had absolutely no facial expression that would say that he heard me/knew I was there. I got closer and said a few more things to him and still nothing. He most certainly knows who I am, and always gets excited when he sees me, when I'm about to feed him, etc. The next couple of days were pretty bad and it made me realize quite a few signs that I had never really thought twice about before. So, I took him into the Dr. When he walked in the room and said hi to Hunter... no response. He said hi a couple more times and also clapped next to his ear a couple times. Hunter never turned his head or made any kind of face. The Dr. finally got his attention and began talking to him and making faces. Hunter got very excited and was smiling and kicking. Once he has eye contact with you and sees that you're talking to him he is very into it and gets very excited. I always thought of course he hears me.. look how excited/smiley he is.. but that could just be because of the faces I was making. The Dr. checked his ears and said they were totally clear and said everything was probably fine, but he referred us to a specialist just to be sure. It took a few weeks to actually get into a specialist, and, during that time, Hunter seemed to totally change. All of a sudden he was giving me those faces I wanted to see to show me that he was hearing the sounds I was making, the sounds his toys were making, etc. He just seemed much better, and I really stopped worrying about it. I still wanted to go in and see the specialist just so I could set my mind at ease. So, when we got there I really thought they were going to tell us that he was fine. And, for the record, he passed the hearing test at the hospital. However, we found out that that test only tests the outer ear hair cells to make sure those are responding to sound, but does nothing with the inner ear hair cells. So, he had two different tests. The first one was the same one they did at the hospital.. where they tested the outer ear. She said everything was fine with that test... and his ear is formed perfectly. At the end of the second test she said "The thing that I noticed with him..." and I immediately knew that something was wrong. So, basically she said that sounds go into his ear fine, but once it gets to the inner ear hair cells and goes to the brain that's where there's a problem. It could be nerve related.. it could be that the brain is rejecting (for lack of a better word) the sounds. It was all very confusing. She said that it's a very new thing that they don't really know a lot about yet, and that when she first started in this field 15 years ago that they weren't doing anything regarding this. So, all the information we got was very general (it could stay the same, get a little better, get a lot better, get a little worse, get a lot worse). She asked if he had a traumatic birth experience/any complications (preemie, very low birth weight, stayed in the NICU). None of which applied to him so she said that it's probably genetic. I read that sometimes they'll hear in the morning, and then they won't hear at night (or vice versa). Or they'll hear one day, but not the next. Or that they will hear every few words, etc etc. Again, it's all very general. She said that he will probably have to wear a hearing aid (or two) forever. We have to bring him back in three months to do more testing and then just continue to bring him every so often as he gets older and can respond better. When he's six months we will just sit in a room with him and they will play different sounds and gauge his responses. So, as of right now he could hear only certain sounds/pitches, or it could be totally random, but we won't be able to know until he can respond better. He has always jumped at very loud noises and is still giving me those faces that I want to see, but the test said what it said. I had medi-cal while pregnant, so that is what Hunter has for insurance, and we don't really get a lot of say. It'd be nice to get a second opinion, but it's not like I can call the medi-cal people and tell them that I'd like a second referral. Anyway, she said that most kids went on to have normal speech, although most needed speech therapy (which is fine), but then the paperwork that she handed to us said the opposite.. that no matter the hearing loss (none to severe), all had trouble with speech perception, therefore trouble speaking. So, I don't really get it. If they can hear just fine, yet still have trouble understanding/speaking words... then it's not a hearing thing? Like I said, it was very confusing. Obviously, I'm extremely upset. I go back and forth between being sad and pissed off. I know that if he can never hear, he'll never know the difference and may be happy as can be, but it's just devastating to me to think that he can never hear my voice or hear me telling him that I love him and that I may never be able to hear his little voice. I obviously have never heard of this before. I don't know anyone that has experienced this. So, I'm just wondering if any of you have any experience with this (or know anyone who does) and could tell me what you know/your story. Anything is appreciated. Thank you