“She’s been strong-willed from the moment she was born.”

My Eleanor is amazing, she’s my second oldest at 13. She’s my introvert and she’s so strong willed and she has been from the moment she was born. She always resisting me, always a 12049692_10154221244341679_5218277526140545766_nresistance fighter. And she is so crucial, she analyzes everything. I’ll pick her up from school and I’ll ask her how her day is and she’ll just have this spew of events and it sounds all negative and so I’ll ask her if she’s had a bad day and she’ll tell me no I had a good day. She sounds like she is just all angry, but she’s not. She just sees everything in a situation, and when she says it back to you and it sounds negative it’s not, she’s just recognizing the entirety of the situation. She can’t decide if she wants to be a Supreme Court justice or an engineer. She has such high hopes. I was worried that she would have a hard time in middle school but she’s loved it so far.


She is half deaf, she has single sided deafness. We didn’t discover it until she was five, but once we discovered it a whole shit ton of stuff made sense. She was born without a cochlea on her left side, and she was born in Cleveland and then when she was born they didn’t do new born screening hearing tests in Ohio. But they did here in Iowa, and now all states do them. But back then they didn’t, but12108284_962504073838170_5608807347501585797_n if they did they would have noticed it. But there is a whole lot of stuff that comes with her deafness. She cannot hear in a noisy room, like she cannot filter conversation in a noisy room, say if she was in a café or restaurant. She also cannot here if you’re on her deaf side- so it’s kind of dangerous. If a car is driving down the road and it honks, she can hear the car horn honking but she can’t vocalize where it is coming from- so we had the city put up a deaf child sign in our neighborhood. I felt terrible that we didn’t discover it sooner because she has had certain limitations from it, but if you had to pick a disability for your child this is the one you pick because you can live with it.

 

“She was the youngest person to get a Baha put in at the university of Iowa hospital and clinics.”

Eleanor was also the youngest person to get a Baha put in at the University of Iowa Hospital and Clinics. A Baha is an anchored hearing aid- but not really. Hearing aids amplify sounds, this one doesn’t, it works as a prosthetic device. So how it works is they put in a titanium screw in her skull on the deaf side, and you have to wait 6-8 months for that to assimilate to the bone. After that she then attaches a prosthetic processor to it that sends the sound on her deaf side through her skull bones to her good side.  The Baha also has really helped her with school.

Bahas were made for people who had microtia- different abnormalities in their outer ear where they couldn’t gather sound so it would take it and so people who have 10689511_10153162394106679_2625254137824829376_nproblems on one side but they still have functioning inner ear. But she is kind of limited with how much use she gets out of it because she was born without a cochlea. The specialist in Iowa City said he’s never seen someone with it with no other abnormalities like mental retardation, kidney problems, etc. And that is what we were thinking of when we first discovered her deafness, could she have a brain tumor? A genetic syndrome we missed? But all in all Eleanor is fine, and I have big hopes for her future.

Frankie