Help Izzy Hear: March Madness?

Greetings!

Since the last post, things have definitely moved quickly! After meeting with our ENT to review Izzy's CT scan, we learned that Izzy, in fact, has bilateral EVAs and cochlea hypoplasia, which means her cochlea wasn't fully formed in utero. Well, that certainly explains why she has hearing loss! We are still waiting on genetic testing, but we have some ideas of what Izzy's disorder could be. According to our doctors, Izzy's hearing loss is progressive. This information gave us a plan.

Another appointment was set for a cochlear implant "work up" with a new ENT who performs CI surgeries and the audiology department at Vandy. While we patiently waited for this appointment, a local non-profit held a conference nearby. Randy and I attended, excited to hear leading professionals from Vanderbilt discuss new technology with CIs and local SLPs discuss best practices with CI patients. The best part? Our surgeon was a presenter!

During break, before his presentation on single-sided deafness and implantation, I just had to introduce myself to gauge my instincts about this man who could possibly operate on my child. I said hello, told him who I was, and mentioned Izzy. His response was all I needed to calm my nerves. He says, "Oh, yes. Bilateral EVAs and two turns." We had not even met with this man, yet he already knew my daughter's name and her case. Thank you, Jesus. His next question: "Did you decide which brand?" (Holy smokes. What a decision! Needless to say, I spend countless hours researching the three brands of CIs.)

The conference was reassuring in that the CI road we had chosen was the right choice. While some children may not have those wonderful success stories that we see in videos shared on social media, Izzy has the language foundation, good habits, and the willing parents (I have to give Randy and me some props here.) to ensure her likely success. We saw multiple charts, plenty of data. We heard exciting new techniques and progressive research. We saw amazing success stories of children who certainly defeated the odds. We got all the good feels that day. And I won't lie. I shed a few tears. Happy tears.

Our next trip to Vandy wasn't as "magical" as the previous visits. Someone dropped the ball and we had not received our candidate packet, nor had we been scheduled for audiology. While the appointment was a little unorganized, we were able to get everything done. Our surgeon explained things, asked for questions. I feel like we had some good ones, but I couldn't leave without knowing how experienced he was with this type of surgery. Rest assured, he has performed over 200 CI surgeries. Ok, I'm good. The audiologist completed all testing necessary to ensure we would have no problems with insurance. She said we absolutely qualified, and Izzy got to pick out colors. Pink, of course.

So, we are all set. Wait for insurance approval (got it within a week with no problems!) and schedule a date (March 8th).

Then, there is school. Somebody tell me why IEP meetings have to be so hard, please. I'm an educator. I have some professional knowledge of these critical issues and laws concerning students with disabilities, but still, as a parent, I feel so terribly uninformed. Sure, they hand you a little blue book of your rights, but things already seem finalized or something. I don't really know how to describe these meetings, but I know that I don't care for them. Luckily, because of an awesome preschool, I knew that Izzy needed a Roger system. I already had the list of devices with prices from our audiologist. This helped speed things along. Since then, the IEP team has met again. Thanks to some amazing contacts at Vanderbilt and their sharing educational information with me, I passed out handouts about troubleshooting, static electricity, and tips for teachers. My hope is that Izzy gets exactly what she needs in the classroom. As a mom, of course I want to be her advocate. I've said before that no one will stand up for my child more than I, but I also have to learn to let go just a little. I've become overwhelmed with thinking ahead. I'm researching reading strategies. I'm researching comprehension interventions. I'm researching acoustics in the classroom environment and wondering if everyone should turn off all the lights and electronic devices to decrease background noise. Clearly, I need to chill. So, chill I must. And trust. I must trust. Given our particular journey, excuse me if I have trouble with trust.

So, here we are. In one week, we will be in Nashville, probably at the American Girl Doll Store, preparing for a really big and important day. Quite possibly this will be one of the most important days of Izzy's life. I know I certainly feel the importance. Obviously, the questions of whether this is the right thing for her, if she will adjust well, if she have any problems during or after surgery are constantly circling in my mind, but as I said, I have to learn to let go just a little. And trust. Oh, the job of mommy!

Prayers, good vibes, and positive thoughts are sought for us to survive this week with sanity, clarity, and a good bill of health. The next update will feature info about new hardware and software, and how well our bionic child is adjusting.