We went to see a new audiologist in San Diego, finally. Maria’s last ABR (sedated hearing test) was in July 2007. At that time our local audiologist said we needed to decide within a month or two whether to get Maria a cochlear implant; she was in favor of it. I wanted a second opinion. She was supposed to send me info on a recommended expert in auditory neuropathy (but not implants). She never sent it to me, so I got another expert’s name (in both auditory neuropathy and cochlear implants) from an audiologist I met at a cochlear implant talk. I called him, sent him Maria’s test results, he said he didn’t think she had auditory neuropathy nor did he think she has severe to profound hearing loss. He gave me the name of a doc here in Phoenix. I called him and he said the test results look typical for a kid with hydrocephalus and he thought her hearing looked to be in the normal range. When we discussed seeing him since he’s local, he said he mostly sees older kids, so he recommended the SD audiologist. We were supposed to see her in January, but Maria got really sick, so we rescheduled for late February.
Fast forward to today. The new audiologist asked us a few questions to fill in the gaps she had (she’d written up a chronology before our appt), said this was a very complicated case, she hadn’t seen anything similar–you know, the usual story we hear about our little Miss Maria. She spread all the papers out on the floor during the appt to see the whole story and in conclusion, she said: I don’t think she’d benefit from a cochlear implant. I don’t think she has auditory neuropathy. I don’t think we’ll learn anything new from doing additional ABRs. I don’t think she has severe to profound hearing loss. I don’t think she’d benefit from wearing the hearing aids again. The waves (test results) look typical of a kid with hydrocephalus. The vision and motor delays and cognitive issues and overall developmental delays add to the complication of what’s really going on and why she doesn’t talk. What may have happened is the fluid-filled ventricles could have been sitting on the brain stem and/or other parts of the brain, which could have killed those brain cells and when the cells are dead, they don’t grow back, so that could have caused some damage to the auditory nerve (? I might be making that last part up).
So what does this mean? I’m not sure. She thinks Maria could be having trouble interpreting the sounds, but isn’t that auditory neuropathy? What is a “typical wave for someone with hydrocephalus”? What can we do?
She called in a speech therapist, who was very good. She said lots of great things, things I’d heard before, but not explained like she explained them. Both of them said we should try to be more consistent about signing. I said I feel like I’ve signed “milk” 100,000 times and she still doesn’t get it. The audiologist said, maybe she’ll get it when you do it the 100,001st time. We need to try and sign in her hand or with her hands, something tactile since her vision isn’t always working. Although sometimes we just need to feed her and get it over with, try to think of meal times as communication times. Sign the first few bites, every time, consistently, all of us. Every time she makes a sound, we should mimic her. We should provide her with choices (we do that, and she does very well with it). Say bababa and other early sounds to her a lot, move her lips while we do it. Have her play with cause-effect toys so she can see she can affect her environment. Toys that make noise, move, and light up are good (we’re covered there, she has LOTS of those singing, dancing toys). Make a big deal when she does something, like activates a toy, makes a sound, does a sign, makes a choice, so she can see how good she’s doing. To some extent, I /we need to incorporate these things as habits, and stop thinking of them as just another damn thing we have to do in addition to all the other damn things. They also think we should find a speech therapist who’s experienced with hearing impaired children. She thinks it should be easier to find a speech therapist since Maria has a hearing issue (compared to a kid w/o that complication). Maria’s current speech therapist is leaving us to meet with other therapists–it’s the new Arizona’s Early Intervention Program (for kids age 0-3) where the therapists meet with each other, not with the kids. Ridiculous and Thank God Maria’s not under 3 so she doesn’t have to participate in the madness. So, it’ll be a good opportunity to find someone more suited to her issues. All-in-all, it was a good doctor’s visit. I’m glad we made the trip. I need to find someone (audiologist) Maria can see locally, maybe not her current one. I have some ideas how to do that. In hindsight, I wish I’d asked Rosanne to take notes during the appointment. We got lots of good info, but it was a lot to take in and remember… I did ask the audiologists to write us a detailed report to help me justify whatever I need to justify.
Maria’s OT (occupational therapist) hasn’t seen her in more than a month and she was very excited to see all the improvements Maria has made (reaching, looking, fine motor skills). Rosanne noticed that Maria’s eating a lot better, she didn’t have a single seizure the whole weekend, she only stuck her fingers down her throat a couple times (when she was being ignored), but didn’t succeed in puking. We did see Amelia (Maria’s cousin). She talked about and looked at Maria, but still doesn’t want to touch her or be too near her.
Now my next battle is to get the insurance company to overturn their denial of her walker and sit-to-stand, but I think I have just about enough ammunition so there’s not even a shadow of a doubt that these items are essential. The physical therapist at school said Maria took a few steps in the walker there at school–the one Maria couldn’t even stand up in earlier in the year! Slowly but surely she’s making progress.
The other thing I’m working on (mountains of paperwork!) is getting hippotherapy for Maria (therapy with a horse). It’s supposed to really improve the upper body strength. I’ve heard that if you improve the gross motor skills, it has a ripple effect in improving many other areas, including cognitive. We will see!