FAQ's

I'm getting questions from every direction, so I'll answer some of your most pressing ones so everyone knows what's going on. You know, since I'm an expert now.

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!

Hambone.

Sam.

Oh, Sam.

I've yet to figure out how I can be doubled over in laughter one minute. And be so completely frustrated with someone the next.

But so is life with Sam.

He is hilarious.




Completely literal. About everything....I'm sorry, I know I said we would eat dinner in a minute, but what I actually meant was 30 minutes. Please go away.

Comes up with the wildest stories to explain why things happen. Like why both his sweatshirts ended up at school when he clearly only took one...he was seriously considering my theory that sweatshirt #2 walked itself all the way to school from Spencer County... Or the logistics of how you lose two belts in the span of a week and a half when he swears he never even took them off.

Loves Alabama Football, Diners, Driver Ins & Dives and anything electronic.

Adores his Daddy and his little sister. And will use both to get around anything I've asked him to do. Because he knows I can't argue with him stopping to give hugs and kisses.




Never (EVER!) misses a meal or snack opportunity. (If he does say he doesn't want to eat, he's about to throw up. Guaranteed.) And will stand beside you, tongue hanging out and drooling, if he is done with his meal and you are still eating. As if we totally forgot to feed him. (See above. Also does this while watching Triple D.) His favorite part of school is lunch time. Seriously. Don't joke about missing meals. It's one of the few things that will make him cry.

Plays soccer, but doesn't like to play goalie and would rather watch Charlie play, than play himself.

Cannot follow multi-step directions unless he's playing a video game. "Sam, go put your school stuff up and change into soccer clothes." And I find him 10 minutes later in the hallway naked, with the exception of socks and shin guards, licking his open lunchbox for spare crumbs and sitting on his homework folder. Because he has long since forgotten what the task at hand was.

Drives me nuts with his endless questions about things he already knows the answer to and nonsense statements. If he says something, regardless of whether it warrants a response or not, he will repeat it....over and over and over and over. Until you have acknowledge he has spoken. For example, right now he's giving me a play by play of what EK is doing. I'm counting and he's said the same statement 11 times now. Eleven. All is have to do to stop it is say, "Ok." But it's funnier to see how long this will last...




Doesn't know how to play. We are working on this, but ask him to just go find a toy and play and he can't. Never has been one to play independently with a toy. Now, you want to wrestle? Or go ride bikes or jump on the trampoline? Or play a video game of some sort? Then you are golden! But send him to the playroom to find something to do by himself and you'll find him laying face down on the floor rolling a marble around. And usually asking when the next meal/snack will be.

His catch phrase..."Wha you said?" never fails to make me smile. Translated to be, "I'm sorry. I wasn't listening. What did you say?" It usually follows almost anything I've said because he never hears something the first time. I chalk it up to being a 6-year-old boy and paying zero attention to his surroundings. Unless food is involved. But that simple question is known by all who know Sam. Just be prepared to repeat yourself.

Is so stinking smart. But does things like wear his pj's to school under his uniform...simply because he forgot to take them off.

So now you can see why parenting Sam makes us laugh. And makes us scream. All at the same time.

We are almost halfway through 1st grade and he's rocking it with straight A's!! And only a few warnings for talking. No color changes. He's very proud of that!

I'm shocked each week when I get his Monday packet of work from the previous week....this kid is smart!! But has horrible doctor-like handwriting.

SAM STATS: 6 years old & 1st grade
Weight: 58.6 lbs
Height: 53 inches (he's seriously as tall as some of the kids in Charlie's 4th grade class)
Shoe size: 3.5
Shirt: 8, but also wearing 10/12's
Pants: 10

Love my middle child and all his quirky-ness.

Sambone Hambone.

Confirmed!

One huge step in the right direction... We are confirmed for surgery on December 16th!! Dr. Katie (bless her heart, I love her!!) is coming in on her day off to play a huge part in helping my baby hear. We see her tomorrow for our Cochlear Implant Evaluation and I may just hug her!

Now, continued prayers for moving that surgery time to 8am. I haven't updated you guys recently on our food issues with EK, but let's just say she puts as much importance on food as my boys do. And if you know the boys, you know that will be a long, hard day with no food! Food is important stuff around here!!

Just cause she's cute...



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What's about to happen.

I can apologize again for the lack of posts....but it still won't make me post more.

None the less, here we are, the middle of November. WHAT??!!

I can try to update you on the going-ons of the Cooks in another post (if you are lucky), but right now I've got a little bit of big news about those ears attached to the princess who lives here.

Last week we saw the surgeon for a follow up to her tubes that were placed back in October. And also to talk about the fact that the tubes hadn't really made any significant increase in her hearing. (I'm gonna glaze over that fact that the visit to the doctor's office was a FOUR hour ordeal. It's too fresh. I can't talk about it yet...)

As I eluded to in the previous post, it appeared the only option left, should we choose, would be to do a cochlear implant.

Know that lots of prayer and discussing and worrying (maybe just from Mommy) has gone into this, but our sweet Ellie Kate is scheduled for a cochlear implant on December 16th.

I know. Wow.

I'm a little past the being-overwhelmed-with-it part. Although, I'm sure that feeling will return before it's all over with.

Here's what you can pray for now:

1. Apparently there has to be an audiologist there during the surgery. Duh. Honestly I hadn't given that much thought until today. And EK's audiologist has December 16th off. Not conducive to doing surgery. They have submitted a request for her to come in and do EK's surgery, but right now we wait to see what she says. If she can't come in, surgery would be pushed off until Janurary. And the biggest bummer about that is we have met our deductible for the year already. Would be mighty nice to at least get the surgery done in 2013. Mighty nice. While I hate to ask someone to change plans just for us, it's kinda a big deal in my little world. So prayers for Dr. Katie to decide to come to work on December 16th!

2. As of right now, they have EK scheduled for 3:30pm surgery. Yeah. 3:30 PM. You know what that means. Somebody is at home all day with a toddler that is awake and can't eat. Totally not cool. They have already asked for a "push up" to 8am, but we likely won't know if they have granted that request until the day before. If we get left at our original 3:30pm time, we may spend all day in the bath tub. Because that is where she is the happiest and most occupied. Only way I could think to legally (pretend I didn't say that) get through the day with a starving kid. Prayers for an 8am surgery time!

3. And of course, prayers for a successful surgery. Wisdom for the doctors who are having to do things a little differently than normal because of her extremely tiny ears. Technology to work. Anesthesia to do its job. And calm nerves for a nervous mommy. I mean, you are cutting into my child's skull!! I'm pretty sure I'm allowed to feel like I may puke all over the place.

I watched a story earlier this week about a teen from China who was deaf. He made the comment that deaf people aren't "wanted" in China. I know that unfortunately that's how many cases are, but having a child who is deaf made that statement hit home. Made me wonder where she would have been at age 14 when she aged out of the system, a deaf teen, who no one wanted. Made me feel like I may puke all over the place. Again.

I'm so incredibly thankful we've been given this precious child to be Mommy & Daddy to for this time. She has turned our lives upside down, makes us smile and laugh out loud almost constantly and is teaching us new things every day. I mean, who knew I'd be teaching myself sign language at the ripe 'ol age of...over 30...

More details before surgery date.

Just know my brain is officially consumed with December 16th right now.

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