True statement. I read a blog and watched a YouTube video. Certifiable expert.
Or just certifiably crazy.
NOTE: I'm really not an expert. I'm just a parent who is soaking up as much info as I can from doctors, audiologists, therapists, the internet, other reading materials, parents on this journey before me and yes, a blog or two. And maybe YouTube. I may not have all the answers or the correct terminology. Heck, I may have completely inaccurate information. But I'm telling you what I know. Correct me if I'm wrong.
What does CI stand for?
Let's just get this out of the way and save my fingers a few extra keystrokes. CI is cochlear implant. Got it? Good.
What exactly is a CI?
No need in me recreating the wheel. See what Mr. Wikipedia says about it HERE. And here's a super scientific cartoon drawing to help you see all the parts.
How long will the surgery take?
I've been told any where from 2-4 hours. We'll pray for 2.
How long will she have to stay in the hospital?
Believe it or not, cochlear implant surgery is outpatient. Yeah. I'm shocked too! Seems like after you cut into my kid's head, you'd want to keep her around for a little while for monitoring. Oh, well. I'm no doctor. So, here's our two scenarios. If we get pushed up to 8am time slot as we are hoping and all goes well, we'll be home later that day. If we get stuck with our original 3:30pm surgery time, I've been told they may keep her overnight simply because the surgery is so late. And you know surgeries are never on time, especially that late in the day. Another reason to pray for that 8am time slot...
But this is brain surgery...
No, it's not. Yes, I do know I may have said that before in passing. I also may be a little dramatic and exaggerate things sometimes. They will be making an incision behind her ear and also using a procedure called a blind sac closure because her little ears are so tiny. (I'm in the process of trying to find out more about this...) It's a closure of the external ear canal and without it we risk things like facial paralysis and other things I don't want to talk about, so we'll just let the guys with the medical degrees do their jobs. But no, not brain surgery.
So, she'll be able to hear right when she wakes up from surgery, right?!?
No, Sam, she won't be able to. (Clearly he's not grasping this concept. It's a conversation we have on a daily basis.) She will need 2-3 weeks for everything to heal and then we will have an appointment with her audiologist to turn the implant on and get everything working. Her activation day is January 3rd!!
Ok, so she can hear everything on January 3rd?
Well, can she hear things? Yes. Will she know how to respond? No. Think of it like this...a hearing newborn doesn't always respond to sounds or your voice and most of the time just generally ignores you and any other sounds in their environment. January 3rd will be her ears birthday! They will be one day old. So, just as we wouldn't expect a newborn to listen to everything we say or talk back to us, neither will she. For quite sometime.
So when will she be able to hear us and talk back to us?
After a CI is implanted is when the real work begins. We have to teach a two year old what sound is, how to respond to it and how to use her voice to make sounds....other than the cute little kitten sounds she makes right now. I really can't honestly answer that question. It completely depends on EK and how well she responds to all this new stuff. But years of work lay ahead of us. Although I'm encouraged by her little attitude and how fast she catches on to things. Hoping that bodes well for her in the future.
Wow, how will you know how to teach her all that stuff??
Well, obviously I'm a genius. And her Daddy's pretty smart too. We did graduate from THE University of Alabama. (Roll Tide.) But she will also continue in a program called First Steps, Kentucky's early intervention program. (Remember...where I used to work as a Service Coordinator??) She is currently seeing a Teacher of the Deaf and a speech therapist (will be moving our focus from feeding to speaking). All that will continue and we also hope to start a play group at Heuser Hearing Institute in January, which is where our audiologist is and also a pretty awesome school for kids who are deaf or have hearing loss. All these fantastic people will obviously be telling me what to do to help us achieve our goals of hearing, responding and using speech.
Why do you have so many appointments with the audiologist?
Well, for one...we like Dr. Katie. And she jumped way up on my scale of favorite people when she agreed to come in on December 16th to do EK's surgery, even though she had planned to take the day off to recover from the Justin Timberlake concert. And who doesn't like a little JT?? (Honestly, I haven't followed him since his NSYNC days, but I hear he's quite the character.) And the actual reason...we will be doing something called mapping. It's explained HERE, but in short, it's what we will do to make sure EK is hearing the best she can with her CI. And it will also ease her into hearing, gradually being turned up as she can tolerate the sound. Imagine not hearing anything for 26 months, then one day BAM...you hear everything!! I'd imagine it will be a little overwhelming, so we'll ease her into it.
What's that thing on her head? I thought it was on the inside.
Well, there is an internal piece to the CI. Hence the "implant" part of that. But on the outside, she will wear a processor, which is the part behind her ear (similar to her hearing aids). Attached to that is a transmitter that sticks to the outside of her head pretty much like a magnet. Well, because it is a magnet. Yes, my daughter will be a giant magnet now. Without the processor, she won't be able to hear. The external piece is the key to her actually hearing. So, if you see her with it off, holding it in her hand, chewing on it, stepping on it, giving it to a friend, shoving it into some random toy, smearing poop on it...any number of things you might expect out of a toddler...please let me know. ASAP. It's kinda important. And not at all cheap to replace.
Speaking of hearing aides, why has she only been wearing one??
Let's just say "we" permanently misplaced the left one. This house, the van, the car seat, etc has been searched and researched, turned upside down and inside out. No hearing aid. And no fingers pointed. I think it is probably at the soccer field, crushed into a million pieces by little people cleats. But that's just my two cents worth. Which is why I'm terrified of losing the CI. TERRIFIED. I may just glue it to her head. Joking. Sorta...
Does she know sign language?
Similar to a child learning spoken words, EK knows a lot more signs than she can actually do. Honestly, she signs "more" for just about everything, no matter what she wants. Except bath. She's got that one down pat too. I've gotten a vague "all done" and "water" a few times, but that's about the extent of her "words". She also knows milk, eat, no, thank you, sit down, hearing aid, Mommy, Daddy, dance, socks and shoes, but she doesn't do the signs herself. Working on upstairs and downstairs. I think she's getting the hang of downstairs because she looks towards the baby gate now when I ask if she wants to go down. We'll continue to use signs even as we incorporate spoken words. Her latest "tricks" include giving high fives, giving "knucks" and giving kisses...but only if she's in the right mood.
Unfortunately, we have reached the point now where her lack of language is frustrating her. And me. Lots of crying and whining and more crying when a simple word or sign would fix the problem. I have to remind myself on a very regular basis that this is the only way she knows to communicate with us. How else do I expect her to get my attention when I'm doing something else? How can I expect her to let me know she'd like some mac 'n cheese when she can't even sign "eat"? We are on a huge learning curve right now, so be patient with both of us. She may cry to when all she really wants is for you to play with her...and I may very well use sign language to talk to your dog. Or your hearing child. Both true stories.
Ok, information overload.
Go process it and let me know if you have a question I didn't answer. I'll try to find the answer.
Let the countdown continue...T minus 20 days until surgery!
2 comments:
Very accurate. Good job. :)
Oh good! Glad I got it right!! :)
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