Lucas update (mommy journal entry)

SHORT VERSION: We suspected hearing loss/impairment in Lucas, have seen 3 doctors. Tests indicated partial hearing loss. Next step, sedated ABR (auditory brainstem response) to determine where exactly hearing loss has occured, to what degree, and how to treat it. The doctor believes that he will need hearing aids, but should be able to learn to speak correctly and hear with assistance.

LONG VERSION: Lucas is 22 months in about a week. He is not able to say 1 single word. A couple of months ago it began to really bother me that he wasn't on "schedule" with his speech. So of course I started researching causes of speech delay and found out that speech delay can be an idication of hearing loss/impairment. As soon as I thought about that, something clicked and as I thought back on things realized that Lukey being so "focused" (at least that's what we called it) on everything he did might have a different explination. So we started doing little tests, calling his name when his back was turned, talking to him from another room, making other sounds when he wasn't looking, etc. We weren't getting any response. I by-passed our doctor and just made an appoinment with an ENT (ear nose and throat specialist). At this point in time I'm freaking out, wondering if we have a deaf kid, wondering how he's supposed to hear the snap count on the line of scrimage, and wondering why the crap I did the 'Signing Time' DVD's with Tyson, but dropped the ball on the whole baby signing thing with Luke. We go to the appointment (Jim's flying) and I explain to the Dr. my concerns, show him (by clapping behind Luke's head) that he doesn't really respond to sound, and he says to me "Maybe he's just deaf." Nice doc, just the conforting words I want to hear, how about we do a test or something. He did 2 tests, one to check and see if there is fluid on his ears (if that was the case then the problem could most likely be fixed with tubes-it wasn't) and another test that was a pass/fail type of thing. You could either score a normal or an abnormal. If you score an abnormal it indicates hearing loss. Luke got an abnormal. Freak. The next step was to do an ABR, the doctor mentioned that it should be a sedated ABR because of his age. When I called to schedule it, I found out that the Audiologist they referred us to, did not do sedated ABR's (In fact there is only 1 specialist in all of Las Vegas that does do them, other wise you just have to go to the tech's at the hospital). Called the dr's office back, told them this, they said that we'll have to do a "sleep deprived ABR" and that he'd have to fall asleep and stay asleep for the whole 60-90 minutes. Yeah right, he's almost 2, he's not going to stay asleep while they poke and prod his head and ears. I told them this, they told me I had to try the sleep deprived one first. It was a joke, I could get him to fall asleep, but couldn't get him to stay asleep. There was good things about that visit to the audiologist though. She did a few more tests, one of which he passed, the other he failed. One of the tests she did was pretty cool and reminded me of a test they would do with monkeys or lab rats. Anyway, you go in this little box size room. There's a speaker on the left and a speaker on the right. Both have boxes below them. The room is dark and the audiologist is outside the room. The idea is that when she speeks through one of the speakers and the child turns toward the speaker that the sound comes out of, the box below lights up and shows the child a toy. Luke failed that test. He sometimes acknowledged when there was sound but he would just look up at me. He wasn't able to actually localize where the sound was coming from. When our attempt at the ABR failed she gave us 2 options, one was to schedule with the tech's at the hospital, the other was to become a patient of the 1 doctor in town that actually does the sedated ABR. She told us that if it were her kid she would go to the other doctor because sometimes the tech's could produce false results. So we started the process ALL OVER AGAIN! Today was our appointment with the new doc, Dr. NG. We REALLY REALLY liked him. I brought all of the test results from the other docs into him and after going over those, talking to us, and seeing Luke's lack of response to sound he thought as well that the sedated ABR is the best plan of attack. He also believes that the hearing loss is partial and can be corrected with hearing aids. One of the things I really liked about him was the fact that he actually asked us what we thought, he said "you're his parents, you're around him, tell me what you think". Anyway, the test will be done at the hospital on the 23rd of this month. An anesthesiologist, audiologist, and Dr. Ng will all be there to perform the test. And then we'll be able to determine our course of action.

What do we think about all of this? Initial reaction was that this SUCKED! Will he be able to speak normally? Will kids make fun of him? Will we go to jail for kicking the butts of the kids that might possibly make fun of him? Will he be able to hear? Will we have to learn sign language? If it's a problem with the cochlea, how the crap will we come up with $80k for cochlear implants? etc, etc, etc.

Then, guilt. There are so many kids that are facing much more difficult problems than partial hearing loss and wearing hearing aids. Lukey is happy, healthy, and vivacious, what are we feeling bad about, we really are so lucky, but...

Then relief after the appointment today, it is most likely only partial, it most likely can be fixed with hearing aids, he most likely will be able to speak normally.

Now, anxious anticipation to get this test done and get the ball rolling.

So that folks, in a nutshell is the Lukey update. I'll write more after the 23rd. It is a lengthy post, but you know how everyone is using their blogs as sort of a journal? Yeah, me too.