The Early Bird Gets The CI

I was going to wait to post anything about Emmeline's CI surgery until her activation.  Is it me or is that taking FOREVER!!??  So activation will be getting it's own post.  
Emmeline was supposed to get her CI on June 3rd, I wont go into all the boring details, but due some infuriating run around by the ENT's office staff, insurance authorization didn't come in until June 5th.  This meant we got bumped to June 17th!  You can imagine what happened when this started to go down.  I am told I handled it well.  Interestingly enough when authorization did come through it was good starting 4 whole days before the 3rd.  
So, jump to the 17th.  We were the first slot of the day which meant we had to be in Fort Worth at 5:15am so we had to leave Denton at 4am.  I figured Emmeline would be less than happy about this but when I stopped for gas I looked back and saw this.  Pretty cute.

When we got there no one else was there.  Not even registration people.  Apparently they don't have to be there until 5:20.  She was still in good spirits.

I'm a little obsessed with before and after shots so here is the before of the left side of her head.

 Still thumbs up after putting on the gown.

I think the way her ENT marks the surgery side is pretty cute.

I am pretty sure she is trying to do thumbs up but they had already giving her "giggle juice" at this point.

I think she is trying to smile here.  She kept scrunching up her face and sticking out her thumb.

Her ENT told me to expect the surgery to take about 2.5 hours.  I figured that meant 2.5 of actual surgery time and about 45 minutes to an hour or prep time while she was out.  Her ENT is more than a little OCD.  His nurse said my estimate was good.  It ended up taking 5 hours cut to close.  Emmeline had a split/fanned facial nerve.  This is common in kids with CHARGE.  Most people's facial nerve moves through their ear area and into the face as one nerve.  Emmeline's came in as one but then split and twisted around her cochlea.  This is a problem because they need to put the electrode into her cochlea without paralyzing her face.  Luckily our ENT has some pretty rare experience with this and was able to go in the "backdoor" where her vestibular system should have been.  It takes longer though.      Placement looks good but we wont know for sure until her CT scan on Tuesday.

I try to pack light when at the hospital.  Especially when I am there with Emmeline alone.  It's hard to handle her and a bunch of bags.  Toward the end of the procedure an Audiologist  came out and gave me this beast.  It's a goody box from Med El for all new recipients.  I stuck my foot in there for scale.  I don't have small feet.  

This is how they left her with me.  She was pretty nice until she woke up. 

Then she started crying that the bandage hurt and the vomiting started.  She was really hungry and thirsty but since she had been under for 2x longer then they thought the anethstesia was really messing her up. She couldn't keep anything down for 14 hours.  

She perked up briefly while Facetiming with Josh and Isa.  Then she cried, all night. It was rough.

I asked them to take the bandage off as soon as shift changed.  Here's the scar.  It's shiny because he super glued it.

Back on the laptop.  You can see that the bandage was so tight it made her face all puffy. 

We got home before Isa got home from the sitter so Emmeline killed time looking at her goodies.  The little stuffed elephant has CI's embroidered behind both ears.  Her name is Mellie.  The piano is her second favorite.  Now we wait 3 weeks for her to heal before we can turn her on and she can hear something.

Here is all her exterior CI stuff.  This is a bluetooth device, 2 BTE processors, and one Rondo (it just sticks to her head), a battery recharger, batteries, a dehumidifier, a microphone tester, plus all the other non neutral colors for the battery pack!  Isa is pretty excited about those.  She really wanted the green. The idea of giving it all to us before her activation date (July 10th) is for her to get used to it.  The problem is she loves it and wants to hear now!   

Emmeline was THRILLED when Isa got home and this is about how far away she would let her get before she started calling for her.  She keeps stopping what she is doing every once in a while to sign "friend" at Isa. very sweet.  

Even though we hit the rather large snag of getting our initial surgery bumped we feel SUPER blessed through this whole ordeal.  These things really are amazing!


Better Without Your Help

See these pictures are WAY cuter without a dirty sheet in the background!

Holding her head SO straight!

 Ballerina Hands

 Isa got a bit distracted by how adorable they both are in the mirror.

Note that Emmeline is up on "Pointe"...for her...

 Isa and her best dance friend.  Sweet girls.


My Wrath Will Be Upon Your Heads Forever!

I am not sure how coherent this will be as my rage is still raging but here goes.

Isa had photo day today for her spring recital.  Emmeline didn't want to feel left out so we put her in one of Isa's first dance costumes that she wore when Emmeline was a baby.  Adorable to say the least.  I even put her hair up in a very tiny bun.  I took many pictures of her as everyone else was getting their pictures taken by the "photographer".  Emmeline wasn't buying it.  She wanted her picture taken with the "big camera".  Meaning on one of the "backdrops".  Sorry about all the quotation marks.  This post will be littered with them.

I'm getting a bit ahead of myself.  When we got there I went into the room where pictures were being taken to do any tweaking that needed to be done because Isa's costume was HUGE on her and I had to do some last minute sewing and pinning and such and didn't want it to show.  After I stepped back I got this:  "don't stand there or she (Isa) will look at you and not the camera".  Annoyed since I was paying for the picture, I responded with "She's a professional.  She knows where to look".  The assistant went on to say that's lots of mothers say that but then they talk and the kids look at them.  I rolled my eyes and walked away.

Back to Emmeline.  After the "photographer" was done I pulled him aside and asked that since Emmeline didn't take dance but REALLY wanted a picture with her sister in the photo area, could I take a picture on his group shot "backdrop" while he wasn't using it.  A flat No.  No one is aloud to take picture of his "backdrops".  Let me tell you,  this thing was hardly a backdrop.  It was a VERY wrinkled tie dyed gray sheet tacked to the wall.  There was no equipment set up around it.  It's not like I would damage anything or that anyone would even be able to recognize the backdrop as his.  He wanted my money.  Let me tell you, had I not already payed for Isa's photos I would have walked right out of their.  He then told me to feel free to use the wall of mirrors as the background of my picture!
Why would I want a picture of myself taking a picture!?!  This isn't some bathroom mirror iPhone selfie!! This is documentation of my adorable children while they still like each other!! What photographer worth anything would suggest a wall of mirrors!?  None.

I opted for the gray wall instead.  It looked better then the sheet anyway.  The only reason I wanted the stupid sheet in the first place was to help Emmeline feel included!!  I think that is what makes me the maddest.

To top off the fun, while I was across the room using the gray wall, his assistant came back over and "asked" me not to take my picture until he was done because my flash would mess up his reflector things.  I say asked because even after I told her I don't use a flash and the setting was off she still told me I had to wait.  Listen, I know how to work a camera lady!!  Idiots.

The kicker is they made a nice bit of money off me every year between Ballet and Nutcracker.  Not anymore.  I think I might wait in line the next time though just to tell them why.  I would have today but I need to be calm to do it.  Otherwise I would just come off as another crazy dance mom.  But let's be accurate.  I'm a crazy advocate mom.


Always There

If there is one thing I had to say would always be there for for me no matter what, it would be doubt.  I never can seem to shake that.  We have gone around and around about whether to get Emmeline a CI, which one to get and when to get it.  After one false alarm, we are finally on the schedule AND have our authorization from insurance.  Bright and early (4am) tomorrow morning Emmeline and I are supposed to head to Fort Worth to have the implant installed.  Now that it is actually a reality I can't help but doubt our decision.
The kicker is, she can hear us.  Every once in a while she'll just perk up and say "I hear a bird" or whatever quiet background noise is going on.  It shakes us.  It would be easier to decide if she were totally deaf.  There wouldn't be so many options then.  We would feel more solid.  As is it she understand most of what we say and can hear most things.  Her doctors keep talking about the benefits of 2 good ears and that she will function better in groups.  It's still hard.  By doing this, they will probably silence her left ear.  Right now she can hear tones at normal levels in the left but is probably not able to distinguish pitches or speech.  Due to her anatomy, during the surgery spinal fluid will probably flood her cochlear and kill any remaining hairs that are functioning in there. If the CI doesn't work she would be out of luck.  This is our shot.  We could leave it and hope better technology comes along and maybe cause her a developmental delays or we could push ahead and hope her CI functions properly and she is actually able to hear. (This, like any other surgery has the risk of not working).  If it doesn't work she will still be stuck silent. There is no reversal for the damage.



A Little Extra

For 4.5 years this was always with me.  I had it either in my pocket or purse every day of those 4.5 years.  Some people check to make sure they have their purse or keys or phone before leaving the house.  For me it was this little syringe.  It had to be this one.  It was the "key" to Emmeline's g-tube.  It has a special spout that was made to fit in the valve of her g-tube allowing air or water to be injected or removed from the balloon that holds the g-tube in.  Without it the tube can't be replaced if it falls out. Thus my need to always have it with me.  I couldn't just stop at any old pharmacy and pick up a new syringe.  I could only get them in the g-tube kit.  I'm sure I could find some other way in a super pinch to get my hands on one but having been bitten thinking that about Emmeline's O2 sensor when she was little I never took the risk.  
I was cleaning out my purse the other day and TOTALLY panicked when I couldn't find one in there.  Then I giggled.  I honestly love when that happens.  When something that would make my freak out is suddenly no longer relevant to us.  It's nice.  It's like a little extra exhale.


And It Spread

Its not a surprise to most that The Avett Brothers are my FAVORITE band.  They came through Dallas last year but we opted out because it was in a bar with standing room only.  Thanks but I'll just listen to them in the comfort of my home.  Well, This year they came through and were at a much larger venue. I was really going back and forth about it because I don't really like spending money on myself.  Josh went behind my back and bought the tickets anyway.  He even sprung for the more expensive of the tickets I was looking at and I'm glad he did because it started to rain as soon as we got there and then cheaper seats weren't covered.
I haven't been to many concerts.  I think the only other one I have seen is Rufus Wainwright so I don't have a lot of experience.  I LOVED it.  It was amazing.  The only thing slightly off putting was that the base was up so loud that it actually made my heartbeat irregular.  I got used to it though.  I love that music.  I could feel it pulsing through my body and brain and I totally relaxed.  It was wonderful.   Especially after my rather rough week.
Then it hit me.  It will never sound like this to Emmeline.  She will never hear this the way I do.  There is nothing I can do for her.  No one I can argue with to get her where I am right now.   Will she ever know that?  Could she ever really understand that?  Probably not.  Her brain will adapt and make the most of what she has.  Brains are cool like that.  But I'll know.  I'll know that the most she can do is feel the base that I found slightly annoying.  She wont ever hear it.  It makes me kind of sad.  She might not even like music anymore after the CI.  The choices we have to make for our kids.  But she'll be able to hear my voice and I hope that matters to her.