Hearing aids are expensive. I will add that at the time we had really good insurance and hearing aids are still expensive. We had to bring a check for $1600 when we picked them up. That is a lot of money to us. So we were pretty stressed out putting the hearing aids on our wild toddler with sensory issues. How the hell is this going to work?
I want to add a little info here about the hearing aids themselves. While we waited to get the hearing aids I googled them to death. I had this horrible image in my of really clunky hearing aids. I pictured them being super obvious and not discreet at all. I kept having really weird thoughts. Like, would Cooper wear the hearing aids in our family pictures? Would he be able to play sports with them in? Etc. It never ended.
The hearing aids themselves were tiny. We chose clear for the part that goes in the ear drum and a tan color the part that hooked around his ear. Because Cooper was a toddler we decided to use a string and a dinosaur clip that hooked to his shirt. This would prevent us from losing them if he decided to rip them out.
The first day putting them in was stressful. Cooper would scream and thrash. We were super unsure of ourselves and we wanted to be careful not to damage anything. Ultimately though they are pretty durable so we got over that fear pretty fast. Cooper’s hair is a little longer so you could hardly see the hearing aids. I like to call it hockey hair! I was shocked by how discreet they were. And thankful. If it wasn’t for the clip and orange string I bet most people wouldn’t even notice them. (You can use dental floss for the string…I learned this after the fact!)
The Audiologist told us that she wasn’t going to turn the hearing aids on all the way until we went back for our 2 week check up. She said that wearing the hearing aids is such a challenge that she didn’t want to shock him with sounds. I guess that made sense…but to be perfectly honest, we wanted a reaction. We wanted to know we were doing the right thing. We wanted results. Dr. Alice’s honest opinion was that the speech ‘should’ come quick once Cooper starts hearing.
Cooper goes to daycare 3 days a week and we opted to not send them to daycare the first week. I wasn’t quite sure how to teach someone else to care for them yet.
The first week went amazing. My wild little man who fights me on everything wore his hearing aids during all waking hours. How you ask? Well, I just don’t think he cared. They didn’t seem to bother him at all. Or, help. I called Dr. Alice after the first week and said I wanted them turned up all the way. Go big or go home. Cooper had no problems with them so let’s get hearing and talking!
Once the hearing aids were turned up all the way one thing changed. Cooper started high pitch screaming. It was awful. It was crushing. Everyone kept telling me to give it more time. The hearing aids are going to work.
This is the point where I realized something was wrong. Call it mommy intuition. Call it instinct. I don’t know exactly. My gut told me that something wasn’t right. My husband and I completely disagreed. I said it before and I am going to say it again. Hubs is very black and white. If a doctor says you have a hearing loss than of course you have a hearing loss.
I felt very alone. I knew the diagnosis was wrong but I didn’t have the energy to fight. I didn’t know who to call or where to start.
The school district visited a few days later and brought the school audiologist with her. This lady was amazing. She did Cooper’s hearing screening at 12 months…the one where he heard perfect. She told me that she reviewed Cooper’s hearing results from his tube surgery and something wasn’t right. During the surgery he failed the ABR but passed the hearing screening. She said that a person with a hearing loss would fail both of these if they truly had a hearing loss. She set up a hearing test for the following week.
My husband felt like I was chasing dreams. That I needed to move on. Get over it. But I couldn’t. I had to know the truth. And I knew the appointment was going to be a nightmare.