Luke’s Story – Update

– Luke has had a couple of hearing tests since getting his aids. Megan, his audiologist, did bone conduction tests which uses a baha device to vibrate the bone behind his ear to transmit the sound. It bypasses the inner ear, and is a way to determine if the loss is in the nerve/brain (which is permanent). Luke has already had this done by the audiologists at Mercy, so we knew that his hearing doesn’t improve when the inner ear is bypassed and that his loss is permanent. Megan was simply verifying their testing. Luke’s loss remains stable at this point. Megan was also able to get an initial reading at 250 Hz with air conduction (when sound goes directly in each ear via inserts or headphones). She was fairly confident of his reading, but Luke was getting really tired. His left ear tested at 30 Hz and his right came in at 35 Hz. She is planning on retesting this range at his next hearing test.

– Megan is ready to order Luke’s own set of hearing aids. He’s been wearing a loaner set that his school provided him with. His new pair is water-resistant and can be worn in the tub, playing in the rain or sprinkler, and any other situation where he might get his ears wet. It’s pretty awesome if you think about how much language he’s missing out on during those times (especially bath time). We had to decide the color we wanted his new aids to be. We knew this was coming, so we had talked about it. The aids he’s wearing now are bright blue and we loved them. We don’t have the intention of hiding his hearing aids or letting them blend in. If Luke decides that he wants them to blend in more when he’s older, than that’s what we’ll do. But, for now, we wanted something fun. We were given a sheet of color options, and they were about as bland as they come. Tons of silver, brown, beige, and black. Boring. The only color they had was a light baby blue. That wouldn’t cut it for a growing boy, so we opted for a transparent pair. You can see through the plastic and look at all the guts and battery in the aid. How techy! Perfect for the son of two engineers. And we realized that even though his aids will be pretty muted, we can still be as crazy as we want with the ear molds!

– Luke’s ear tubes are inching their way out. Megan could see the internal flange on both tubes, so they should fall out anytime now. I’m praying that he doesn’t revert back to his passion for ear infections. Tubes aren’t that big of a deal to be put in, but they make a major dent in our bank account. Worth it, but oh so expensive.

– Laurie, Luke’s Teacher of the Deaf, has determined that Luke is ready to increase his therapy at home. Currently she is coming to our house once a month, going to the daycare once a month, and seeing him once a month when we are at Moog for audiology. They usually spend the first few months working with the child on keeping the aids in place (more behavioral therapy than anything else), but Luke has never really messed with his aids. Plus, he’s responding well during his sessions and has shown that he’s ready for a more intense schedule. Laurie wants Luke to have therapy five times a month – once at Moog, once at daycare, and three times at home.

– Laurie has again brought up the toddler class at Moog and that she wants Luke to attend. The class is a language-rich environment and pretty intense speech therapy for the kids involved. She explained that the immersion of language in that environment will only help Luke and could possibly be the difference between him speaking perfectly and him speaking like someone with a hearing loss. She wants him to attend twice a week. Alex and I instantly agreed that it is something he should do. I mean, why would we decline something that could potentially be so helpful? The problem is that the class is from 9 – 12 and is 20 minutes from his daycare and 30 minutes from our office building. Because Alex and I both work, getting him from the class back to daycare is going to be an issue. For one of us to do it, it would be 1.5-2 hours away from work to get him back to the daycare. It just wasn’t going to work. We are already going to be late getting in the days he has class at Moog. I started wracking my brain to figure it out. We looked at moving Luke to daycare three days a week and hiring someone to watch him the other two afternoons. The problem is that the savings from reducing his time at daycare doesn’t make a dent in what we would have to pay someone to watch him for that time. We don’t have a ton of extra cash each month to spend. Plus, there are weeks that Moog won’t have classes which means we would have to stay home or have someone watch him those mornings. I looked into switching to part-time (and putting both kids in daycare part-time), but we need my full-time income even with the reduced child care. It was obvious that the best choice was to pay someone who is willing to pick up Luke at Moog, feed him lunch (Moog doesn’t do lunch and he will miss lunchtime at daycare), and drive him to daycare that’s 20 minutes away. Now the problem is finding someone who we trust with the life of one of the most precious things in my world who is willing to do this and has the time/availability. No big deal, right? The other issue is that Luke’s class starts this summer, but he will take classes until he’s 3 years old. So, we aren’t just looking for someone for this summer. We also need a long-term solution for the school year. Now, I can’t even tell you how much mommy guilt I have because I can’t be the one to take him to and from his class. I feel like I’m failing him a bit. Plus, I hate that I can’t be there to interact with his teachers and the other parents. I’m really hands-on and I want to know how he’s doing and progressing. I want to network and make friends for him (and us). I want to do everything I can for him, and I have limitations. And, it kills me.

– When we started the process with First Steps and Moog, a family friend mentioned that you could be reimbursed for mileage when driving your child to a First Steps approved therapy session or appointment. I kind of brushed it off because she was driving quite a bit farther than we were so I thought that we wouldn’t qualify. Then I started adding up how much we are driving and how much that will increase when Luke starts classes at Moog. I talked with Laurie about it and she mentioned the mileage reimbursement. There was some paperwork that had to be filled out and mailed in, so I did that. A few days later I received a letter saying that I was approved! Every bit helps and this can go towards paying someone to help us transport Luke. Isn’t it amazing how things always have a way of working themselves out?

– In order to obtain Luke’s aids and increase his therapy, we had to have a meeting with our First Steps Service Coordinator to update his IFSP. Typically it’s done every 6 months so that goals and outcomes can be updated. Cassie, our coordinator, came over the other night and met with Laurie and myself. Remember – our team from Moog is always at meetings in order to advocate for us. Anyway, Laurie had to push and validate the reasons for an increase in therapy. The meeting lasted about 30 minutes and Cassie approved everything – Luke’s aids, increase to 5 times a month therapy, and approval of my provider status to be reimbursed for mileage. His 6 month review is set for the beginning of June. The classes at Moog will be approved then in time for Luke to start with the summer session.

– We were at a birthday party for a friend of Anna’s. It was at a place that had a ton of bounce houses. Luke was happily playing in the middle of one bounce house when I noticed that his hearing aid was flashing indicating that the battery was running low. I had a pack of batteries in the diaper bag, so I went and grabbed one. I tried to coerce Luke out of the bounce house, but he wasn’t having it. So, I climbed in and proceeded to change his battery in the middle of the bounce house. It wasn’t the easiest thing ever – imagine trying to thread your shoelaces while being tossed around, but I got the job done. There aren’t too many people who can say that, I guess.

Hard at work during a hearing test. Laurie is in front of Luke and Megan is looking through the window.