Friday, January 30, 2015

Next.

Editor's Note: There are a few non-yucky hospital and scar pictures in this post. If you don't wanna see it, don't read it.

So, the most asked question for Ellie Kate...What happens next??

Surgery is done. We are in the business of healing now. (No, she can't actually hear with her left ear yet. Soon. She has the inside parts. Outside parts come next week.)

The actual surgery went great. Her surgeon didn't even have to remove her tube and repair her ear drum because it had already fallen out and repaired itself. Yay eardrum! As with the other ear, all the inside stuff was just "angry" (his words). Why angry? From so many untreated ear infections during her first months of life. Makes me want to squeeze her extra, because you know she was in pain and had no one loving her through that.




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Post-recovery. Pre-going home. Mommy had to hold my head up because I was having trouble doing that on my own.





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All 22 electrodes were successfully placed in her cochlear and he said he did his best to line up the new magnet with her existing magnet on the other side of her head....but apparently her head isn't round or symmetrical. Go figure. So he did his best.

Really as long as we can still sport our signature pigtails in a super cute fashion, we'll be good. (Sorry. Went all superficial on ya...)

If you don't recall our earlier cochlear implant conversations (and HERE), here's a little diagram about what's going on in her head now... (on both sides!)




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Or check this out... What is a cochlear implant?

We had our post-op appointment on Wednesday (Did you hear the screaming? She's become a very anti-doctor's office kid. No idea why....) and have been cleared for activation NEXT WEEK!! Wednesday, February 4th. Ear No. 2 Day.





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Incision looking pretty good 11 days post-op. Only a little swelling left. And her nice crew cut.

Here's my request for y'all. She has grown to love her right ear/CI. No. 1. She asks for it, she knows she needs it, she comes to me to put it back on if it falls off...they are BFFs. Since No. 2 is coming on the scene 13 months later, I'm worried she won't love him as much.

It's not uncommon for kids to prefer their first implanted ear. And who's to blame them. She's gone well over 3 years and has never used that ear. Now we've got to train her brain to be nice and use lefty too. We will spend time with No. 1 off, forcing her to use No. 2. And perhaps, ticking her off in the process. But in that respect, I feel like we are back at square one. I just need them to be friends. She doesn't have to love him. But I need her to tolerate him. Cause he's here to stay.

He was too expensive for her to not at least pretend to like him!

More next week. Hopefully a video of her skipping through a field of wildflowers totally in love with ear No. 2.

Or at least a video with no tears.


Sunday, January 18, 2015

Number two.

(This was written....well...a while ago. So I'm posting the original post and adding to it at the bottom.)

I need to update y'all on the princess that lives here.

For starters, she's 3 now. (Yeah. That happened in October.) Blows my mind.

She's still not much bigger than a small one-year-old, sporting her size 2 diapers, but she rocking 3 like nobody's business.

She aged out of First Steps, our state's early intervention program, in October and lost her amazing home-based therapists. So she started preschool at the local school for kids with hearing loss. But since Mommy's too attached to totally let her go, she's just going one day a week right now. Fortunately we were able to keep our great speech therapist since she works at the school, so EK gets to see Mrs. Cheryl while she's there plus all the other great staff and teachers there!

She is still making great progress. At her 3rd birthday, she was testing with language skills in the 18-20 month range and had only been hearing for about 10 months! The standard once implanted is for them to make up skills on a month to month basis, which would put her closer to a 10-12 month skill range, but she's making up time at about 2 months for every 1 month.

Baby genius.

We've got lots of word approximations and a few real words and tons of signs. And she will chatter and babble and talk to us all day long. We just don't speak her language yet. (Boys are convinced she's speaking Chinese...) We've got a good "daddy", the ever present "Bicky" (her BFF Mickey Mouse), the always needed "poop"...she even gives us a good attempt at the "Let it go..." chorus from Frozen. But no "mommy". Which makes sense. I'm only the one who provides for and caters to her every whim. 24 hours a day. Why would she attempt to reward me by calling my name?? Turkey.

One day soon. Hopefully.

And speaking of soon, she is scheduled to have her left ear implanted on January 19th! Just a few short weeks away. We are excited to start that process again and are hoping it goes as smoothly this time as the first time around. We have an amazing team of doctors, surgeons and audiologists that have helped us each step along the way.


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So, now January 19th is upon us. Tomorrow.

I thought this would be easier the second time around.

After all, we are pros. We know what to expect. We absolutely love her surgeon and our children's hospital is pretty fantastic too. We know we are gonna have a mad kiddo in the morning that can't eat. We know were gonna have an even madder kiddo once we get to the hospital. (She's smart. Ain't no foolin' her. Mom. You SAID we were going to Krispy Kreme!!) We know she'll be a pitiful mess after surgery. We know we'll spend the next week wrapped up like a walking q-tip in footie PJ's to avoid pulling things over her head. We know her sweet little face and ear will be swollen and bruised and it will make me want to cry when I look at her. We know she'll likely cry and get upset when we first give that new ear access to sound for the first time ever. We know we still have weeks and months and years of therapies and hard work.

But the week long feeling I've had that I'm gonna puke is making me think that it's not going to be easier.

Maybe harder.

Because I know what to except.

This is also one of the most fantastic journeys I've been on. To see your own child grow and be stretched and literally recover from months of neglect and zero early intervention.....I couldn't ask for a front row seat to a better show!

Seeing her learn and engage and try to talk and sign to us....I absolutely love it! We celebrate the tiniest of victories. And we worry when we think she's not doing well enough.

But there's lots more to come!!

Thank you to everyone who has reached out to us, prayed for us, loved on us as our family goes through this journey. I can't wait to share new videos and pictures with you guys! And I can't wait to see how The Lord uses this little bundle of energy to further His kingdom!

I mean....what kid has their own hashtag at 3-years-old?!?

This one. #newearsforek


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