We were supposed to return to the audiologist on Friday for a sound booth test and to turn things up a little more. But then this happened...
Stupid snow.
A bit of ill-timed snow threw the city into a panic and although we tried, it was gonna take me all day to get downtown. (Normally a 40-45 minute drive.) And in the interest of our safety, we returned home after 30 minutes in the car and only a few slippery miles down the road. I was terribly bummed. Like almost in tears, bummed. Who knows...hearing hormones, maybe? But our fantastic audiologist was able to fit us in this coming Thursday, so hopefully that won't set us back too much.
This whole thing is a very, very gradual process. But I'm interested to see how she does in the sound booth with almost three weeks of hearing under her belt. Other than crying. She always cries when we first go in. But then she gets over herself when they bring out the toys.
Here's a few videos practicing our new found hearing skills. I usually take advantage of lunch time when she's strapped in and still to make lots of noise, so excuse the lunch meat hanging out of her mouth. She is still only hearing loud sounds, but she's got the squeaky dog toy, the drum and the vacuum down pat.
She often giggles now when she hears something. Or cuts her eyes towards her right side, which is the side she can hear from. Hilarious. And how I caught her the other day when she realized this doll made sounds. I thought it was a little quiet for her to be hearing it, but the doll also moves, which I think is where some of her surprise came in.
"What's that??"
We started playgroup last week and it went way better than I expected. After I hid behind a tree in the lobby of the school (mom of the year, right?) and they were able to whisk her off before she realized what was going on, she did great and never shed a tear. And I got to watch her the whole time from a little booth with a one-way window. While I'm grateful for the opportunity of the playgroup, seeing the other kids that are ahead of her made me realize just how much work we have in front of us. It was good for me to see. The little girl next to her is two months younger, implanted on one side at 18 months and the other side at 22 months and is using words already. I was impressed.
And encouraged.
Why does she look like such a big girl sitting on her carpet for circle time?? She's just a baby!!
FYI: that didn't last long. She checked out and headed back for the toys and
had to be redirected multiple times. Can you blame a sister??
So, we are making progress. Slowly, but surely.
Now, will one of you guys tell her it's almost 10pm and it's time to give it up and go to sleep....
Many of you have asked about what is actually on EK's head now, so let me introduce you.
Mr. Processor, meet your public.
Behind her ear is the processor part. That's the brains of the operation. There's a few buttons, but right now they are disabled except for the on/off button. Mainly so she won't accidentally push a button and jack things up. But also so the parents won't push a button and jack things up.
There are also two microphones up there. And my understanding of the two mics...one for the things you want to hear. And one to filter out the noise you don't want to hear. This is the biggest change in the Nucleus 6 versus the 5. Being able to change depending on the wearers environment and filter out unwanted noise and sounds. Think about going from your quiet car to a windy sidewalk and then into a noisy restaurant. All things we don't think about, but makes hearing way more difficult for EK.
The part that seems to magically stick to her head is the coil. And it's not magic, it's a magnet. In her head. All jokes aside, yes, she's a 18-lb magnet now. Without that piece "stuck" on her head, she can't hear.
The cord is the coil cable. In layman's terms, it's what allows the coil and the processor to talk to one another. And apparently it breaks easy. Maybe they should cover it with Teflon or something.
The flesh colored part is called a Snugfit. This is the part where we say "Praise Jesus for snugfits!!" We were so worried it wouldn't stay on her tiny ear because it is bigger and heavier than her hearing aids. But with the help of the tiniest snugfit they make, it's hanging out on that tiny ear like they were made for each other!
The brown cord you see coming off the processor is our insurance policy. In case the snugfit fails us, little bit decides she no longer wants to wear it or even knocks it off accidentally, the cord is attached to her shirt with the little owl clip and keeps it from hitting the ground and shattering. Or even worse, losing it. Hopefully. She wore a clip with her hearing aid. And yes, even with that clip, we lost one. But this clip uses a silicone band to hang on tight to her CI and I'm hoping it serves it's purpose well. I found these on an Etsy site called The Bebop Shop and we LOVE them! In fact, I just ordered two more for backups. And cause a girl needs to have options.
On her head, it looks like little more than a big hearing aid. You can barely see the coil because it's under her hair. The most noticed thing is her flashing green light that tells me it's on, working and connected. Orange means "Houston, we have a problem", which other than a dead battery, we haven't had to deal with yet. The kids at church get a kick out of her lights...."Uhhh, Mrs. Jana, Ellie Kate's ear is flashing."
And the inside...well, I won't show you the bloody pictures of the inside of her head, but this is what's in there.
I moved her up to program 4 about a week ago, which is the final program until we go back to the audiologist to be turned up more. She paused and looked at me, as if to say, "What did you just do??" but then went right on playing.
Her tears when we first put it on have continued to diminish. They are definitely still there. But much better than the hysterics of two weeks ago.
Maybe they will learn to be lifelong friends after all...
First time trying a PB&J, which is both brother's meal of choice. Every day. She's not sold yet.
You know that moment in time when you realize your child is a genius ...but you struggle with how to tell others without making them feel like their own children are obviously morons?
Well. I'm there.
You see, Ellie Kate read a book to me on Wednesday.
Honest. I've got video proof.
So you see, all parents of children not as smart as mine, I can only hope that one day your child is to reading with such poise and diligence and inflection in their voices. Because I was pretty stinkin' impressed!
Yeah, I'm talking about the child that just choked while drinking her own nasty bath water.
Nonetheless, today is our one week hear-a-versary. Yaaaaaay! And she has been much more vocal this week than she has in the past. She literally ran her mouth the whole time we were at the surgeons office for her post-op visit on Wednesday. I love it.
The visit went great, by the way. He had no concerns, her incision at that point looked like little more than a scratch with a little bit of scabbing.
And a heck of a bald spot.
This was last Saturday night after the steri-strips FINALLY came off (less than 2 weeks out). I was shocked at how well it looked!!
See the upper curve above her ear? Amazing. What's inside that head is making her hear.
We'll follow up again in April with Dr. Gadre.
Her screaming fits when we put the processor on, who has been lovingly dubbed "Bear" (But Sam's the only one that calls it that..."Mommy, Bear is still on Ellie Kate's ear." He reports to me. I like it.) have diminished....ever so slightly.
I'm a routine kinda person. So, of course, I have a routine for this. I try to make sure the processor is on her head before we leave her room in the morning and after nap. One, because we obviously want her hearing all of her waking hours. And two, this way she just knows what to expect. She crawls up into my lap crying. She knows we are going to put it on and knows she isn't gonna like it. But she willingly lets me do it. Bless her tiny, hearing heart.
She has also been signing more. Which I love because it's so stinkin' cute to watch! She tells me "thank you" after every puff that she eats. I'm sure that has to get tiring. And "thank you" when she wants me to do something. But before I actually do it. Gotta work on our timing. Also signing sleep, no and please on a more regular basis. We have also sorta, kinda learned to wave. But are always a little delayed on that one.
Y'all know how happy and laid back sweet little EK was on Friday when we first introduced her to her new ear? How she didn't seem to care that her entire world had just changed? Or that we had just hung thousands of dollars of equipment on her ear like she was a human Christmas tree? And how cute she was flinging Lego bricks at us because we were making too much noise??
Well, scratch all that because she hates her new ear now. (I need to give the 'lil fella a name...)
She's still ridiculously cute, but oh...do the tears come when she sees that processor headed her way. I've tried multiple ways of introducing it, let her play with it, we've put it on her stuffed animals and dolls, played with the koala that came from Cochlear America who has toy CI's on his head, me and the boys have put on the toy ones so she can see it won't kill us, laid it next to her so she can see it and they can make nice with each other, tried to sneak it on while she takes a bottle, etc. It really doesn't matter how it happens, she's just not a fan. Now don't get me wrong...once it's on her head and we've moved past the 5-10 minutes of hysterics, she's fine. (Except for after nap on Sunday. That meltdown lasted over an hour. But I'm gonna blame that on the super-short-mini-nap that she tried to pull off as a real nap.) It's just the initial shock of going from silence to noise that gets us every time.
Poor, pitiful baby.
This was Saturday morning. After I changed her clothes and tried to put it back on her. Before she realized she was scared of just the sight of the thing. I'm posting this not to make fun of my crying kid, but so I can show her when she grows up how cute and pitiful she was. Please ignore the bed head and pj's.
I promise it's not hurting her. She's not in pain. And it's not too loud. Or she'd probably be taking it back off herself. This is just a HUGE, HUGE transition for her. I can't even wrap my head around what she has to be thinking each time she goes from the perfect silence she's known all her life to the noises of our house. It really is quite an overwhelming thing if you give it any thought at all.
Now on a happy note, we moved up to the 2nd program this morning and it didn't phase her in the least. Like I said, once she's past the initial shock, she's pretty good. As long as you don't mess with it. She doesn't want you touch it either. It is actually staying on her really good. We were all worried about it being so big on her tiny ear and not staying on, but the 'lil guy is hanging in there and I'm not having any trouble with it falling off. Or her taking it off. Which is more than I could say for the hearing aids. You would think with her strong dislike, she'd be flinging the thing across the room, but she toughs it out.
Rock star.
We've been making lots of noises for her, hollering her name way too many times in a day (the boys are really getting in on this and it's not annoying at all), and giving words to all our signs. Every once in a while, we get half a response. Or an eyebrow raise. Or she takes away whatever we are using to make noise. Meaning: please stop it now. I play music a lot during the day when we are home and I'm pretty sure she was rocking out to some praise & worship jams at lunch today, but I couldn't find my phone fast enough to catch her jamming. (Really she probably wasn't. Just my wishful thinking and her being good at picking up a beat.) If you don't like noise, I'd stay away from the general area for a while.
It's all about teaching her how to listen right now. I do a lot of pointing to my ear, signing "listen" and saying "Good listening!!!" in my best sing-songy-preschool-teacher voice. I'm good at it. Just ask me if you see me out. I'll demonstrate.
Now, please remember she's not going to respond to her name. Yet. And she's not going to just start talking to us automatically. And lots of people and noisy rooms are a little terrifying right now. (AKA church on Sunday) And no matter what Charlie says to you, please know she is hearing now, she just doesn't know how to respond yet. He's certain we are lying to him. He totally cornered me and called me out this afternoon. "Mommy, Ellie Kate can't really hear. I know." He's certain in all his 10-year-old wisdom he's always right. About almost everything.
She's also decided in the last week that naps aren't for cool kids and she's not taking one anymore. I'm not sure who told her that naps were optional or if that magnet in her head has messed with the napping cycle thingy in her brain, but I'm not okay with it. Between being sick, surgery and then holiday traveling, her normal routine is all messed up so I'm hoping with fingers crossed that getting back into our normal schedule will make her appreciate a good nap again. Plus, with no nap, by 5pm we are an absolute joy to be around. J.O.Y.
Love her sweet sleep deprived face.
Keep praying we can get over this hump and be friends with our new ear. It's gonna make life quite frustrating if they can't get along. I've been told this is a good sign and we'll get past it, so I'm banking on that. I don't like to make my kid cry multiple times a day, even if I am doing something that I know is for her own good. Makes me want to cry too. And my cry isn't near as cute and pitiful as hers.
Next installment: I'll introduce you to her ear. He's really an amazing fella.
Oh...Roll Tide. Just because I'm feeling a little extra crimson tonight.
Do you know how difficult it is to not say "Can you hear me now?" to someone who just got their ears turned on?? It's really almost impossible. And completely cliche.
Nonetheless, it's been said in this house about a bazzillion times today.
Waiting on Dr. Katie in the Heuser Hearing waiting room.
Ellie Kate got her cochlear implant on her right side activated today. She is turned on and fully operational! Well, I say fully...but more like she can hear some loud noises and it's our job to make sure we are super loud to teach her what sounds are.
YAY!! New toys to play with!!!
Wait......what's about to happen???
She did not at all respond like I thought she would. I thought we would at least get a whine or a slight cry...
Nothing.
In the first 30 seconds, she basically ignored us, then got really still and cut her eyes at me as if to say, "What's going on here??"
Here's the first 4ish minutes of EK's hearing career. Me banging legos together, us yelling her name....anything...anything....?? She was hearing us. You just have to watch closely for indications. Please ignore the rednecks talking and laughing in the background. (And please don't feel obligated to watch all of this. Really. It's more for the grandparents.)
There was more of this and more of her just hanging out tolerating us trying to get her to miraculously look up and say, "Mom. I got it. I can hear you. Just stop with the banging already."
That never did happen...
Then she heard us laugh. I'm certain of that. (We got a couple of giggles out of her in response around 24 seconds.)
We took them off and got schooled in the world of cochlear implants. Sister has more accessories now than any girl should really need! A whole briefcase, in fact, of CI paraphernalia and goodies to make life easier. She even has her own dehumidifier and remote now. Seriously. She definitely jumped all of us in the technology realm today.
I'll just wait patiently while you guys talk.
After we were done with our lesson, we put it back on her and got a little more of a response the second time around. Almost like she was nervous. And she needed her Mommy. Hey, I was fine with that.
More banging the Legos. And she kept taking them away as if to tell me to stop. And when I didn't...she just chucked them (around 1:20). And I'm her mom and I think she's fantastically great and does hilarious things. So this was funny to me.
So the rest of the day...she's keeping them on fairly well. The bigger problem is that her ear is so tiny and the CI is so huge. So they tend to slip off if bumped or if she gets a little bouncy, which happens when we are excited. We've said her name a half a million times today. And she has ignored us almost every single time, but she's just practicing being a teenager.
Really, I just have to remind myself that she has newborn ears today. Really less than newborn, if that's even possible, because a newborn would have had 9 months of in utero hearing that she hasn't had either. She has a lot of learning to listen and then learning to talk ahead of her. But we and her therapists are very optimistic that she'll move through these milestones fairly quickly.
She's a smart little cookie. And I don't say that just cause I'm her mom. She really is.
I'm gonna need a drink after all that. Gimme the full fat vitamin D stuff.
Speaking of cookies, we got some to celebrate her hearing birthday, but I had to eat EK's because she had to go to sleep. In true toddler fashion, she chose to skip her nap yesterday. And missed it today because we were getting our ears turned on.
We were lucky to make it through dinner all the way to 7:15pm. But during all the meltdowns, she still kept the CI on. Which is encouraging to me to know that even when ticked off, she'll leave it on. Even left it on in the car on the way home even though she took off her socks, shoes, bow and tried to get her shirt off.
For all you blog stalkers...you know who you are...the ones who creep me out when we meet in public?? Joking, joking...sorta...
I updated the look. Yes, I know it took 6 months for Ellie Kate to not be "coming soon". We are going simple this time. I may still change it up. We'll see.
I also realized that I need to get back to using my actual camera and quit posting crappy iPhone pics. Ugh. Grainy pics are like a weird pet peeve.
And huge thanks to Cherilynn Magee Photography for the new family pics! If you need pics for anything in my area, she does a fantastic job. And she's fun! I'll share more of those soon...
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