Many of you have been patiently (or not-so-patiently, in some cases) waiting for the newest segment of The Riley Report, and to learn more about the road to cochlear implants. Thanks for bearing with us! We haven’t had a lot to let you in on until now, but hopefully I can overload you with information in this post. We just got back from Dallas, so we have a lot of news for you! (If you need a recap of the adventure so far, read The Riley Report: An Introduction.)
“It is important to understand that cochlear implants are not a cure…”
A big concern about cochlear implants is the belief that they diminish a child’s immersion into deaf culture. Many argue that implants isolate children from being “fully accepted” in either the hearing or deaf communities, leading to bullying and/or insecurity. Another negative is the chance that implants won’t work out for some people, especially for those who have lived a large portion of their life without them. Some people just don’t like them, or they don’t notice an improvement. There is also a risk of nerve damage in the face during surgery, which is increased for those with an irregular facial structure.
Many people fail to realize that COCHLEAR IMPLANTS DO NOT RESTORE HEARING. It’s important to understand that cochlear implants are not a cure; they are merely a tool of access, much like glasses can be for the visually impaired. Implants work to to process various frequencies that the patient cannot hear naturally, and will not sound the same as natural hearing would. (From my understanding, the audio comes across digitized, which makes sense, seeing as the audio is processed by a small computer.)
“We knew from the moment that Riley was diagnosed with Noonan Syndrome that we would be looking into everything available to assist her. “
I want to assure everyone that we’ve considered our options seriously, and went over every potential risks and benefit of cochlear implants with Riley’s medical team. MANY times, in fact. We knew from the moment that Riley was diagnosed with Noonan Syndrome that we would be looking into everything available to assist her. With her increased risk of learning and developmental disabilities, Ross and I agree that giving her added audio access would be extremely advantageous to her education.
We don’t want to cut Riley off from the deaf community. Just because we have opted for cochlear implants, that doesn’t mean we’re giving up on signing with her. We also plan on joining some of the play and support groups available through her deaf and hard-of-hearing services. I expect push-back from overly-opinionated people, but I am more than comfortable with our plan for Little Bear.
“I expect push-back from overly-opinionated people, but I am more than comfortable with our plan for Little Bear.”
We picked the Cochlear Nucleus 7 for Riley. The Cochlear brand is the most commonly used, and the features of this model best fit our needs. We were able to get accessories for each cochlear implant, including microphones that connect directly to the implants to help focus the sound in noisy environments. We also ordered water-proof casings, so that she can wear the exterior devices during a bath. The Nucleus 7 is also compatible with true iPhone/iPad pairing, so it will be like Riley’s wearing headphones when she watches cartoons in the car! I’ll also be able to check the battery charges, and turn her devices on and off from my phone.
Our Dallas team is waiting on an MRI from Dell Children’s. One was ordered when Riley’s hearing loss was first diagnosed (September 2018), and the surgeon wants to review it before putting in Riley’s implants. Nobody in Dallas is sure what the hold-up is, so I’ve been making phone calls to see if anyone from our local audio team can help us get that MRI to the Dallas group. Getting a new one would mean sedating Riley, and everyone wants to avoid that unless absolutely necessary. (Standard practice for heart patients.) Riley’s doctor is prepared to do the surgery anyway, but he would prefer to see the MRI first. It never hurts to double check.
“The Barber Bear Family will be going back to Dallas for the surgery sometime between now and February 7th.”
We don’t have an official surgery date yet (as we are hoping to get the MRI first), but we do have a deadline! The Barber Bear Family will be going back to Dallas for the surgery sometime between now and February 7th. The surgery will last approximately four to five hours, and Riley will stay at the hospital over-night for monitoring. She won’t have access to any sound for at least three weeks, while the swelling goes down. After we check back in with the surgeon to make sure she’s healing well, we’ll go to get the devices turned on. (Don’t worry, I’ll take video.) After that, we’ll be checking in with the Dallas audio team every few weeks for six months, before transferring care back to our local team.
Riley’s heart is doing great, by the way! There has been a steady decrease in the gradient of the hypertrophy. This does not mean that her condition is improving or correcting. It just means that her medication is working to help ease the blood flow through the hypertrophy (the enlarged area that impedes the flow). If this trend continues, her heart condition might be manageable with medication for years to come. Eventually, she will still need the transplant, but we want to prolong the life of this heart as much as possible.
“We expect to see a lot of improvement once she gets used to her implants.”
Developmentally, Riley is still months behind where she needs to be, but we’ve seen a lot of improvements lately. She has really advanced her communication skills! We use a combination of simple words and phrases coupled with signs. We’re also using flash cards with some of her favorite toys and snacks pictured on them (and pictures of the signs on the back, for the adults who are still learning and practicing). She can sign quite a few words now, but a lot of the sounds she is making don’t coincide with the words. We know that has to do with her hearing capabilities though, so we expect to see a lot of improvement once she gets used to her implants.
Little Bear’s physical development is also slow, but still advancing. Her occupational therapist thinks she could be walking (or at least VERY close) by the end of the year (just a few weeks left)! She can already take a step on her own, and she’s right on the edge of being able to stand on her own. It’s always so disheartening to see other kids around her age or younger. They all seem far more advanced, and bigger (she’s only seventeen pounds, you know). I always have to remind myself that it isn’t a race, and that Riley will take more time and patience than the average kiddo.
“It’s a lot to handle, and there are people in this world who can’t. Some days I don’t even think that I can handle it.”
Being a parent is the hardest job anyone could have, but being a special needs parent is a fight. Coordinating the different doctors and services, educating and updating everyone (Thank goodness for blogs, right?!), worrying about added health and safety risks everywhere we go, managing her frustration with her own limitations, and trying to raise her to believe she can do anything, but only to an extent… It’s a lot to handle, and there are people in this world who can’t deal. Some days I don’t even think that I can handle it. Then, my Little Bear does something completely adorable and unbelievable, and I’m reminded of just how far I would go to make sure that she gets everything that she needs.