Saturday, November 21, 2009

Hearing aid.

This week, I took Blair to be fitted for a hearing aid. We are going to do a trial with her right ear. It will be a loaner that she'll have for three months, because hearing aids are expensive, our insurance doesn't cover them, and we don't even know if she needs it or if it's going to work for her. I have to be honest and say that I'm not completely sure this is what we need to be doing, but I'm not a doctor or an audiologist, and they assure me that they will be using a low gain aid, which will not hurt her hearing. Because the child hears. She appears to hear just about everything I say, even with background noise. She was in the kitchen this week, and I called from my bedroom, "Blair, are you ready to brush your teeth?" and off she raced to the bathroom. She loves to brush her teeth. I have a list of probably over 100 words and phrases she demonstrates knowing. Her speech is not really good, but she's only 13 months old, so I really don't know if that's a clue about how she's interpreting sounds or if it's just normal speech for her age (after being born 5 weeks early and so so sick, and spending almost a month sedated and another month in the hospital).
I have had a feeling since day one with this hearing stuff. I don't know why, but I have just questioned a lot of things... the doctors we're using, their expertise, what we're doing for treatment.... Maybe that's how parents feel when they go through something like this. Our babies are supposed to be perfect, right? I've tried to convince myself that I'm just being silly because I don't want Blair to have a hearing loss, but the feeling has remained. Maybe it's because Blair's diagnosis of auditory neuropathy is just not super common, and I'm not sure how much experience her doctor has with it. I don't know. I do know that I've never had doubts like this before. I think Blair's audiologist probably rolls her eyes when her staff tells her I called. They all probably think I'm in denial. (Maybe I am?) I try to tell her and the doctor how much Blair hears, and I don't know if they believe me. Once I was told, "Well, there doesn't seem to be really anything (hearing) in the right (based on the ABR)."
I have to give the audiologist credit though, because she is super patient with me even though
I've done things that might as well have spelled out to her that I have doubts about her ability to do her job. I've been very honest with her about the work I've done on my own to make sure that Blair was getting the proper care -- contacting Dr. Berlin (an AN specialist), going to Atlanta for a second opinion on Blair's treatment, etc. The recommended wait and see approach was very hard for me, because I'm a get it done kind of girl, but the Atlanta ENT agreed, so that's what we've done, and it has seemed to be ok. We drive quite a distance to go to the Atlanta Speech School once a month for early intervention, because I know that they have AN experience. I'm doing all I know to do, and I still have that feeling.
I'm not convinced that we are getting true results in the booth testing. Blair gets bored so quickly. I wonder if she doesn't respond to the sounds even though she hears them. She does ok with the speech, but she could not care less about the tones. Last time we were in the booth, they played a tone extremely loud, and Blair just kept looking at her book. I know she heard it though, she had just responded to tones a lot softer minutes before. When she checks out, she's out. Blair doesn't even always turn when I make sounds at home, but she'll reach her finger out to touch my ear -- and her finger is reaching before she ever looks at me! She touches my ear, because that's what she sees me do when she does turn -- she turns to look at me after I make a sound, and I touch my ear and say "Good listening!" So instead of turning her head, the smarty pants just throws that arm out and reaches for my ear.
I called to check in with Dr. Berlin this week too. I just wanted to give him an update on what was going on with us and see if he thought we were on the right track. He ended up talking to Blair's teacher in Atlanta as well as the audiologist there. He told them that he is not completely convinced that she has AN in both ears, but that the tests that he has (the ones I sent him that were done here) do not provide enough information to tell. They have all agreed that Blair may need another sedated ABR done by another facility. Not the best news for my feeling. Right now I am waiting to hear back from Dr. Berlin about what to do. Maybe Blair's doctors have been right all along, and we're doing just what we should for her. I'm hoping that we'll find out shortly, but cut and dry answers don't come so easily with AN. In the meantime, I guess we're going to try the hearing aid. I do realize that I'm not a doctor, and I could be wrong about my feeling.


Julia said...

OMG! Everything you are saying about Blair's hearing I have thought about Perron's vision. I have just had a "feeling" that something wasn't right for a long time. I haven't know whether to attribute it to his prematurity or not. IT is so hard to decide whether it is a developmental delay or not. I am dying to talk to you but I forgot to save your number when you called last time. I want to talk to you about everything that is going on. Call me when you can! Love you!

Jen O'Daniel said...

Ashlee, I think you're doing just as you should... It's us moms that have to do all the second guessing and probing and pushing and constant communication with the doctors and specialists. After all, as Julia said on her blog, it is the moms that truly do all the constant evaluating... so whether you are a doctor or not, you do know the most about Blair. Keep up the great job, Mom! :)

Jamie said...

Totally agree with other posters. you are the mommy and mommies just have that intuition! I know for the first 2 months of Abby's life I just knew something wasn't right. Everyone just "poo-poo'ed" me but I knew. Turns out after a ton of doctor visits that she had severe acid reflux and reactions to my meds. I knew it all along.
So don't second guess yourself. You are the only one that has Blair's 100% best interest at heart. So speak up and keep fighting!!
We're praying that everything turns out just right - whatever that is! :)

Joanna Davis said...

i think it's both the mommy AND the teacher in you! it's the intuition thing...hope it all works out...and that she doesn't need that darn hearing aid! and if she does...she'll still be perfect!