Monday, June 30 — Hearing Test Update
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Monday, June 30 — Hearing Test Update
Her hearing test was this morning.
She had so much anxiety about going to the clinic. That’s where she gets her stickers and dressings changed when she’s awake… and sometimes shots. The fear hit hard. She kept asking tearfully — “What are they going to do to me?”
I kept assuring her… “We’re just going to play games.”
She doesn’t remember most of the games we played early on before chemo started. Except the monkeys — she wore headphones, the audiologist would play sounds at different frequencies, and as soon as she heard it, she’d toss a banana to the monkeys in the game. She loved it. She flew through that test with flying colors. Her hearing was 100%.
But over these past months… I’ve noticed things.
She seems really sensitive to some noises — but not others. It hasn’t been consistent enough to pinpoint. Crowds overwhelm her. But if didnt know if it was the noise from overstimulation from
Her body being so weak or that the Noise itself bothered her. Sometimes singing does… sometimes not.
But these last three weeks? Something changed.
I feel like I’ve had to yell half the day unless I’m talking in her ear. Her words have changed — they’ve gotten less clear, more like a toddler. She talks louder now. And sometimes when we answer her, she’ll say, “Say yes?” Which really means — look at her. Speak clearly. Speak louder.
Last week we were on the swing and I mentioned the birds singing… and she looked at me and said… “I can’t hear them.”
It’s not just about loud or quiet. It’s frequencies.
I mentioned it to the NP Thursday, and they immediately ordered a hearing test before her next round of chemo next week.
Today was that appointment.
Avry was so scared of what they wanted to put in her ears to get a good reading. (it wasn’t the earphones like before.) We called her daddy because she was in tears… and honestly, I was almost in tears. He listened to her fears, talked to her gently… but she was still so frightened.
The audiologist and I began discussing other options. She was so kind, so understanding. She said it’s very common for these littles to come in here and be so traumatized from all the things they’ve been through. The other option we have is to test while she is under sedation.
Avry started to relax.
I suggested we try the puppy game — I’d noticed she was beginning to interact a little. So I put the headphones on and every time I heard a sound, I fed the puppy a bone.
Avry was excited! She even told Amy to come help us!
She did great — enough for the audiologist to get a good idea of where things stand.
It wasn’t a full enough test to tell precisely where she is, but this is what we know:
Based on today, she is hearing only 47% of conversation.
- I knew it was bad. But I was shocked it was that bad.
It’s been so gradual…
I wanted to fall apart and have a hard cry. She loves to sing…No wonder she’s been so scared. No wonder she’s been so insecure and afraid. It’s not the only reason, but I know it plays a part. It just stabs. 💔
I wanted to fall apart. But I couldn’t. I started convincing myself… there are worse things to lose. There are things they can do to help her hear. She’s not losing her eyesight. She’s not losing a limb.
But it’s still more loss. More grief.
They’ll need to do further testing while she’s sedated on Monday before immunotherapy so they can adjust her Cisplatin chemo accordingly.(the one that destroys the hearing)
It’s just more…and Losing more of her.
Thank you for carrying us.
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