Thursday, April 7, 2016

sweet ainsleigh // hearing aid update // two years in

It's hard to believe we're almost two years into this journey. Ainsleigh was fit for her first hearing aid on May 12th, 2014. I looked back at old posts and couldn't believe the difference. Ainsleigh has hair now! I don't have to put a hat on her so she'll leave her hearing aid alone. She doesn't cry for appointments anymore! In fact, the audiologist said she does better than some kindergartners on her testing. And she goes into "the booth" every six months to have her hearing tested.

"The booth" is exactly what it sounds like. A small booth that Ainsleigh's speech therapist and I sit in with Ainsleigh while the audiologist sits at a control panel outside. There are various tests performed in the booth, but today Ainsleigh was having sounds played into her ears at various decibels to test if the hearing in her good ear has changed. (Thankfully it is still testing just as it was at birth.) They also play some sounds into her left - or deaf - ear to see if she has any response or reaction.

Ainsleigh is given a toy by the speech therapist, which she holds up to her hearing ear, and when she hears the sound she drops the toy in a bucket the speech therapist is holding. Every other time Ainsleigh has simply dropped the toy in the bucket, but this time when they played certain decibels - ones she has never responded to before - in her left ear she moved the toy to her left ear, indicating she heard the sound in that ear.

When the testing was completed the audiologist showed me the results. IF the results can be replicated when we return in six months we'll have learned something significant: Ainsleigh has more hearing in her left ear than we realized

Ainsleigh will still need her hearing aid, and she will still need all of the support and services we've built around her with the help of a fabulous team, but she might be able to hear on her left side. Not very well. Not all of the sounds she can hear in her right ear, but more than we initially thought.

How exciting is that?!?!?!

I cannot describe the feeling in the room when she moved the toy to her left ear and indicated she was hearing in that ear. It's so hard to know how much she can hear, and what is being referred to the other ear, but in this case it appears that she definitely was hearing decibels we didn't know she could in her left ear. It was so exciting for everyone, and I think we are all anxious to see what happens at her next appointment.

Two years ago I was so overwhelmed by the prospect of a hearing aid, and Ainsleigh wearing one all waking hours seemed like an absurd idea, but we've met that goal now, and Ainsleigh is hitting all of her speech and language milestones with ease. It took a lot of work, but if for some reason you are facing something similar I want to encourage you to stick with it.

Put the hearing aid in 3,000 times. Start with five minutes of hearing aid use at a time. Leave it out for two weeks if you're losing your mind, and your child is so frustrated they scream when you approach with the hearing aid. Give yourself a lot of grace. Don't assume every other parent is doing a better job than you are. If you have ever tossed a hearing aid across the room in complete frustration, I sympathize.

It's a hard road to walk, and it's really complicated and emotionally draining, but when your child uses a sign you didn't know they picked up, or leaves their hearing aid in for a nice long stretch, or does something completely unexpected with their speech development, all of the hours you put into working with them will feel like time well spent.

Ainsleigh sat up straight in my lap today, looked her speech therapist in the eye, and moved the toy to her left ear to indicate she heard sound in that ear. The hours of work, the weeks of putting a hat on her in an attempt to avoid putting her hearing aid back in every two seconds, the appointments and home visits, and even the month we took off last summer because we were moving and I was done with the hearing aid battle, all coalesced and led to that moment. It's hard and frustrating, but so worth it when your child begins to thrive.

When you do really well on your hearing tests, and surprise your mama and everyone in the room, you get your first cinnamon roll

Monday, April 4, 2016

from 2:00 on

This might be my favorite time of day. The kids are running around outside. The bread I baked today is cooling on the counter. There is a chicken slowly roasting in the oven for dinner. Tea is steeping so I can make iced tea for dinner. The kids have napped - or had rest time - and then we cuddled and read books for a while as they woke up.

This is my time to read for a few minutes. Or try to figure out what fixtures to select for the bathroom. Or which room to paint first. It would be an ideal time to clean up a little bit, but the house isn't too wrecked today, and the laundry is all caught up, so I'm writing instead. Most days I do something other than cleaning. A book always wins in this house. If the kids or I want a story it comes before (almost) everything else.

Music class resumed this morning. We're on our fifth ten week session. The kids love it, and we are now close enough to walk, so we're sticking with it for now, even though we've considered our latest session the last session the previous two times. Ainsleigh loves to walk to class, but today she DID not want to walk home. I don't usually bring a stroller, because she insists on walking, but I wish I had one today. She screamed at top volume the entire way home. Unless I was carrying her, which I didn't want to do too much of since she was the one who insisted we walk. My apologies to the neighbors - especially the one just down the hill who comments loudly on my parenting skills - for the late morning disturbance.

The kids are clambering all over the playhouse out back and roaring like lions. Their friendship is a wonderful blessing. Sometimes they fight like cats and dogs, but the majority of the time they play nicely together and enjoy each other's company.

I'm trying to decide what exactly to do in the main bathroom as we gear up for a major remodel. It will be late summer before we get in there and start working, but the choosing of fixtures, flooring and tile is beginning now. The tiles on the walls in both bathrooms have begun falling off. It's as if they simply can't hang on any longer. The house is 56 years old; that is a long time to keep things looking beautiful and well put together. The kids shriek as tiles and grout fall into their bathwater, which is amusing until I have to scrub the tub after every bath.

I am quite content, and quite sad, which is the strange emotional juxtaposition I carry within me every spring. The Charlotte rose is leafing out nicely. There was a moment - weeks actually - during the summer when we were sure it had not survived the move, but it is thriving now. We haven't planted the rest of Charlotte's flowers yet. I want the same flowers we had in the old house, and I am sad we likely won't have them planted and blooming before her birthday. For a moment I thought about snatching flowers from the old house for the vases I like to scatter around from April through May to remind me of her, but then remembered that grief often presents irrational acts as a good idea. Basically, grief can still make you behave in a crazy manner six years after the initial gut punch of an unexpected death.

Ainsleigh is now sitting next to me asking for her hearing aid and reading an old People magazine. Quality literature from a young age is very important to me. This is my cue to rejoin the kids in their world. Guns, dolls, Star Wars and lions from now until bedtime.


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