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.

Blerg.

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.

Things I Thought About You In The Middle Of The Night

To the "person" who stole my phone from Walgreens tonight.  Here are a few thoughts about you as I sat awake feeling to violated to sleep.

You are Crap
You are worthless to everyone
You shame everyone who knows you
You probably don't care
You have an evil heart
You make me sick
You are devious
Your mother failed you
You failed your mother
I would spit in your face
I would take out a billboard with your picture on it saying you are a thief, while showing me spitting in your face
You feel self entitled
You are probably all cozy in your bed with MY phone charging on your nightstand
You invaded me
You stole pictures of MY KIDS
The thought of you seeing those pictures makes me want to vomit
I wish you could feel what I feel
Do you even have feelings?
I would spit in your face again
You are disgusting
You can go to hell and I hope you do
You better not taint MY phone with Candy Crush
You are conniving
You are sleazy
Your thoughtlessness will haunt me forever and if I get to be a ghost I will haunt you forever
I'm glad me pushing the "play sound" button on icloud over and over irritated you so much you had to turn off MY phone
I hope karma bites you and then craps on your face
I hate your face
I hate you

A Sunday Afternoon Ramble That Rambled A Little Long....

I don't like how emotions make me feel.  I'm a control freak.  Whether my hatred of emotion feeds my need for control or my need for control feeds my hatred for emotion isn't really relevant in my opinion but they are eternally linked.  Well, it isn't accurate to imply that I hate all emotion.  There is one range of emotion where I feel totally at peace and in control.  Oddly, that is the Anger/Annoyance range.  I feel totally calm and level headed when I am angry at someone.  It's kind of nice. It feels like a "Force Push" release of all my built up unwanted emotions.  I can totally focus.

During a very enlightening therapy session once, my therapist asked what I "do" with all the other emotions if they happen to creep in?  I thought it was an odd question because in my mind I was blocking those emotions out when ever they tried to creep in.  He had a very different (and mostly correct)  point of view.  That all those emotions were still there.  That I decided I couldn't/wouldn't process them so I put them behind what he called me emotional "dam".  Don't you love all these cute little catch phrases?  Anyway,  my dam would work for quite a while and then when it would fill up I would get angry.  Since anger was my safe emotion I could use it to let out of little bit of overflow from behind my dam.  Not the healthiest but as as single person it served me well.  Once I got married not so much.  In marriage you can't be in total control, you know since there is another living thinking person in the mix (but believe me, I tired).  I didn't like it.  Not at all.

Even after realizing the damage this type of "Force Pushing" could do I had a really hard time stopping.   Stopping meant finding another way of letting emotion out of my dam.  Yes I still have a dam, I'm only human after all, you can't have everything!!

So, some years/months/days were more successful then others.  For me, as with most people I think, the worst emotion is sadness.  I just can't seem to deal with that well.  I get stuck.  It's like this sticky gooey pit you can't get out of and even if you manage to, you can't get all of it off before you fall in again.  The last 4.5 years with Emmeline have been educational to say the least.  In many many ways.  It's like I'm in a crash course on dealing with emotions because they swing back and forth so quickly I think I have whip lash.  Sometimes me feelings literally hurt.  It's like every nerve in my body is stimulated and can't turn off.  Just a constant ache.

I hate crying very, very much.  It is hands down in my top 5 of things I hate to do and I've had to do some pretty awful things.  We Perkins girls, as I have said before, are not pretty criers.  We don't get all dewy and have tears silently fall down our cheeks.  We get puffy and red and the snot tends to flow faster then the tears.  It isn't pretty.

 I have designated places where I try to cry.  Yes, I said try to cry on purpose.  The thing with my dam is, sometimes I can't gauge just how full it is until it's too late.  I'm either in a situation where I can't really get angry appropriately or I don't have time to figure out an exit plan.  This can lead to several outcomes.  I can either get really hostile, shut down or cry.  Since like I mentioned before that sometimes you can't work mean into the appropriately and I hate crying I needed another option.

Forced crying.  I try to make myself cry to let out just enough emotion to function nicely with people.  Super healthy sounding I know.  Since my crying freaks more then a few people out I try to do it in private.  My 2 favorite place are the shower and my car.  The shower works well because I don't have to worry about getting all dirty and gross from crying because I'm already in the shower.  The car is more for convenience.

It wasn't until recently that I have been second guessing the car.  I was sitting at a light trying to cry when I realized something.  People can see me.  Stupid I know.  Before I figured that even if someone was looking at me closely as we drove past each other they likely wouldn't realize I was crying due to speed, but at a light it was pretty obvious.  Do they wonder why I'm crying?  I would if I saw me.  I would worry, what would make this person break down in their car at a light?  What is happening to them?  Maybe I should get one of those pull down baby shades and write "I swear I'm not abused!"  on it.

Why aren't there more private places to cry?  Yes I have a home but there are kids there.  All the time. Am I the only person who likes to cry alone? I doubt it.  I really think there should be a business where you can just go and cry.  No one would bother you, or ask what's wrong or if there is anything they can do.  Because let's be honest, sometimes it is just something you have to do alone and although they mean well it doesn't really help, and sometimes that's hard and sometimes you need to cry.  Alone.

Eventually Our Turn

When Emmeline was super little and in the ICU we had the best room.  It was right across from the nurses station so they could never forget about us.  Every time they sat down they would look up and see us and feel compelled to make sure there wasn't anything we needed.
This room also gave me a great view of the info board for all the patients on the floor.  Don't worry, no one's privacy was violated.  It only had first and  last initial, who their nurse was, who their Dr was, and their room #.  At the very end there was a small box.  In every patients box was drawn a small heart.  Every box except Emmeline's.  I finally asked our nurse what it meant.  Emmeline was the only patient in the ICU ( and it was fairly full)  that wasn't a heart patient.  At the time I thought how lucky we were that her heart had been checked out and we didn't have anything to worry about.  Yeah...
I should have known better.  I guess it's our turn now.  Now that little drawn heart will be us.  It's amazing now significant a little drawing can be.  Hopefully it will be our only time with that on our board...Maybe I shouldn't have said that....

The Big Lie

After watching the second to last episode of The Office I can no longer remain silent.  Pam and Jim have one of the worst relationships I have seen on TV in quite some time.  At first it seemed sweet enough.  Boy likes girl, girl is with someone else, boy loves her from afar, boy eventually gets girl.
I will admit as guilty as I felt, I wanted Jim to make a move.  But then not so much.  Sure Roy was a jerk compared to Jim, but does that somehow negate that Jim caused Pam to cheat on her fiance?  Why wasn't this a bigger deal!?  Sure Roy tried to unsuccessfully punch Jim later (which he deserved)  but it still didn't feel like enough.  But that is not my big issue.
My problem with Pam and Jim is how one sided their relationship is.  Jim makes all the sacrifices for their family.  He always supports Pam in her every whim.  He tells her he backs her no matter what.  To follow her dreams, even if it isn't what he wants.  He lets her decide without biasing her with his pouting.  What did Pam do when Jim wanted to follow his big dream?  Sorry honey, but no. Who cares if you could make our family way more money and do something you love!  I'll string you along for a while so you can get really attached to your dream and then cut you off.  Aren't I sweet?  How does Jim respond to this?  Shocked at first but then caves.  Pam, you're a B#$%^.
There are only 2 big things I think Jim ever did that maybe would have scored him some selfish points.  One, buying a house without telling Pam.  I'm not sure this one even counted.  I would LOVE it if a guy bought me a house.  Plus they weren't even married or anything so...it was Jim's money to do with as he pleased.  Suck it Pam.
The other which is rather large, was taking the Job in Philadelphia.  As previously stated, this job made them more money AND was something Jim loved.  But Pam wouldn't give up her apparently great job as office administrator so Jim could live his dream for while.
This gives such a TERRIBLE example of a healthy relationship!!  Why does the guy have to so all the work?  In the latest episode Pam was afraid Jim would resent her if he didn't follow his dream.  I thought "Yay, now they'll be real, and Pam will have support Jim".  Boy was I wrong.  What was the show's answer?  "No Pam, I love you so I'll never resent you".  Yeah freaking right!!!  Yes, he will resent you and probably your children too because YOU ARE SELFISH!!!!  It takes give from both parties to maintain a healthy relationship!!! Why does TV do this?! I blame The Office for high divorce rates.   Even if Pam caves next week and they do move away for Jim to FINALLY get to do a job he can excel at and enjoy, it's a little too late.    I will forever feel sorry for Jim that he happened to fall in love with such a selfish woman.  Suck it up Pam, your not that amazing, you shouldn't push your luck.

Oh, I remembered ONE time Pam didn't get her way right away.  One Halloween Jim refused to dress up like Popeye.  It bothered me that Pam even asked because it was obvious to everyone that Jim didn't like to dress up.  What ends up happening?  Jim caves and dress up anyway.

I would even argue that Dwight and Angela had a more realistic relationship.  Doesn't this sound a little more normal compared to the Utopia of Pam and Jim?
1)  Booty calls
2) Cat euthanization
3) Raising a child that isn't his
4) Being with the wrong person at the wrong time
5) Finally almost wrecking as he proposes marriage


My vote is for Dwight and Angela for the long hall.

The Awkward Talk

I thought about doing it over email.  Honestly I would probably prefer 70% of my human interactions actually took place in writing instead.  Less messy. Talking requires too much interaction.  You have to make eye contact, and nod.  Plus I don't get do overs on the faces I make that are all too telling about what I'm actually thinking.  Emails and txts are safer for everyone.
Since I probably wouldn't be at church on Sunday and people were already making announcements about medical stuff with several families in the ward (congregation) I decided our mid week woman's activity was a good time to let people know that we just found out that Emmeline's heart surgery is scheduled for this coming Wednesday.  As in 6 days from now.  I hadn't really said it out loud to anyone other than Josh which I didn't realize until I teared up.  Saying out loud that your child is having heart surgery is kind of like hitting yourself in the face with a brick.  In the back of your mind your thinking you're tough, and let's be honest this my first go round, but then it hurts.
I learned tonight that not even a room full of women know what to do when someone just starts crying. You still get those "Oh crap" looks as all eyes are suddenly averted to the floor.  Then one brave soul tries to dissipate the situation by asking practical questions to try and distract everyone.
I didn't know the answer.  As I sat there I realized that I had no idea what exactly would be happening to my little Dumple.  For a moment I got angry.  Why hadn't anyone told me!?
Oh, yeah.  I don't want to know.  This is one procedure I would rather be told about afterward.  I just have no desire to know what they will be doing to her little body.  It makes my soul hurt to even consider the possibility that they might stop her tiny heart that works so hard. Even for a moment.  A deep, deep hurt that I can't adequately describe.
Anyway...of course people came up to me afterward to see what I needed.  They meant well.  It was sweet and I am honestly glad they tried.  Seriously.  I just don't know how to get help.  People offer and I just don't know what to say.  I smile and thank them for the thought.  I know I probably wont call.  I'm trying to be better about it.  Here's the problem: I need to do it.  I don't know why or what exactly I  think it proves but I can't walk away.  Maybe it's fear that if I had to do it alone I am admitting I couldn't?  I don't know.  Often times the act of figuring out what in my life someone else could substitute for me is more difficult then just doing it myself.  I have often said, when people say I'm a great mom that the only difference between me and the bad moms is that I can't walk away.  I guess that's the line. Crossing it would just lead to a different awkward talk and we all know how well I do awkward.

I Can't Believe You'd Leave A Girl Hanging!

Whenever I feel bored or just need something to keep my brain busy I hit the handy little "Next Blog" button in the left hand corner of my blog.  Off I go into some random blog.  Sometimes they are good.  Mostly it's some Mommy Blogger who wants to tell everyone how she just had an epiphany about how she "doesn't have to do it all"  or  "how she made 50 freezer crock pot meals and you can too!"  Neither of which I am really into.   There are also a HUGE amount of blogs that never get updated.  If you haven't updated in over 1.5 years then just throw in the towel.  Shut it down!
The ones I really like are the ones that are honest.  That blog about their crappy day or the person that really got on their nerves and made them never want to leave the house again. No, my blog isn't the only one like that out there.
 I do have to admit that the medical ones are my favorite.  I like popping in and looking back several years so I can see all the progress in just a few minutes.  It's like those youtube videos that show a kid growing up really fast.  I think it ultimately stems from the fact that I don't like to wait.  I hate watching new tv shows, waiting for phone calls, having appointments, pretty much anything that requires me to wait for something to happen.
The problem are those blogs that peak my interest and then don't follow through.  I devour their posts getting all engrossed in the story, excited to find out what happens next.  That's when I see it.  They haven't updated in years.  It's like writing half a book, publishing it and then saying "oh, never mind, I'm bored with this".  Rude.
I found just one such blog written by a Doctor no less.  He treated Alzheimer's patients.  It was a very intriguing and heart wrenching blog.  Whether said doctor became too busy or decided it infringed on his patient's rights I don't know.  Mostly because he didn't say.  But either way he should said something, anything.  All it does is peak people's interest and then not follow through.
Shut it down! It's not even really that hard.  I mean seriously, you're a doctor!

The Year Of Hole Closures

Most of my time is spent on the phone with receptionists.  If I am lucky enough to get through what I refer to as "the door guard", I then get to talk to the Nurse.  Who then relays whatever she deems necessary to the actual Doctor.  If they think my question is worth answering then they will relay the reply back through our adult game of telephone to me.  Part of me understand why they do this and the other part HATES it.  I inevitably have another question about whatever the doctor's response was which just starts things all over again.  I spend whatever part of my time that isn't on the phone waiting for my phone to ring.  The part I hate the most is when the clock hits about 4:45 and I know I will now have to hope they remember my question in the morning and start our game all over again.
I can count on one hand the number of times an actual Doctor called me and only one other time it has been after 5pm.
I have been playing "telephone" all day with several Doctor offices in regards to Emmeline's cochlear implant none of which were wrapped up before they closed shop.  So you can imagine my surprise when my phone rang at 5:05pm and when I picked up an actual Doctor was on the other line.  It wasn't just a regular Doctor either, it was a Surgeon!  It took me a few second to recover.  It wasn't about Emmeline's CI.
What was it about you ask?  After 3 years of back and forth we are finally getting Emmeline's ASD repaired!!!  I am SUPER excited about it!  Not only does this mean my daughter wont be walking around with a hole in her heart, but they will be able to close it with a catheter via her femoral artery!  Sorry I know that's a lot of exclamation points.  I am just glad to be wrapping it up.  This will hopefully have a positive impact on her CI "issues" we are having right now but I'll go into that in a post of two.
YAY!!! No more hole!!!!  Being myself I feel like I should point out that she will still have her other defect (bicuspid aortic valve) but it shouldn't impact her for several decades and is treatable at that time.

Race Etiquette, It Exists!

I hate racing.  It combines my two least favorite things.  Appointments and stupid people. I get super anxious knowing that I have to be somewhere at a specific time.  Super anxious.  I'll leave it at that.  Let's brake it down shall we?

1)  Parking:  There is never enough local parking for a race.  Never.  Race officials will usually tell you if and where nearby businesses are that will allow parking.  This does NOT mean that the roads become sidewalks for racers to walk on to get to the race.  Have some self preservation and move the the side!  I will nick you.

2) Line up:  This kills me.  Please read carefully.  When the announcer says runners toward the front, walkers toward the back here is what you should do.  If are going to RUN the WHOLE thing go the front.  If you are going to run the first 100-400 yards and then stop dead the middle of the trail and walk.  MOVE TOWARD THE BACK!!!!!   It is VERY dangerous for everyone for you to stop and walk in front of people who are running.  Other runners can't read your mind and that is how crashes happen.  Also, I don't care how fast your kid thinks they are.  If the haven't run several 5Ks before and you know they can do it, make them start in the back.  I will run them over.

3) Stay to the right!:  It's not hard.  Left is for passing right is for cruising.  Just like on interstate.  If i wanted to bob and weave I would have taken up boxing.  Maybe I should try box running and see if people stay out of my way then.  I think I could start a real craze.  This especially holds true for those runner who are really walkers.  Did you not realize this race had more people then just you?  NO ONE and I repeat NO ONE  should EVER EVER be running down the middle!  There is no reason to do this.

4) Appropriate Music:  Once again I assume you know this is an actual race with other people in it.  Some of those people are children.  Please, if you are going to listen to music so loud other runners can hear it, make sure it is appropriate for those in hear shot.  I would rather my daughter not here about adult themed subjects while trying to get some exercise.  On that note, if you are going to listen to music via headphones you need to make sure you can still hear what is going on around you.  While you're rocking out you are running everyone else off the road.

5)  Water stops:  DO NOT walk through a water stop.  Some of us don't use the water stop so this isn't our break time.  I get that you are thirsty and tired but this isn't a rest stop!   If you want to stop then get your cup and step off the side of the trail.  Not everyone stops here.

6) After the finish line:  I know you just ran/walked your little heart out but please, please do not cross the finish line and immediately stop.  You aren't done until you clear the finishing area.  Once again a great way to get trampled.

7) Walking to your car:  This one should be obvious but, cars are bigger than you.  Stay out of the way.  I don't care how tired you are.  Look before you cross and STAY TO THE RIGHT!!!!

Thank you.

CI-BORG

As I said in my last post Emmeline has a new medical adventure for us.  A few posts ago I talked about how Emmeline is now diagnosed profoundly deaf in her left ear. Deaf.  Deaf.  I wonder if I keep saying it it will stop making my stomach tighten up?  Deaf.  Nope apparently not.
We had to wait over a month between finding out she had lost her left ear hearing and getting a MRI and CT scan of her ears.  Funny side note, the MRI tech told me they would take a few pictures of her brain while she was out as well just to "check" things.  I for a real kick out of the report stating they didn't find anything out of the ordinary in her brain scan (like say, a stroke!).  Anyway, Her ears are apparently the only thing she has that screams CHARGE syndrome.  She has the classic lack of a vestibular (inner ear balance) system.  She also has only mostly formed cochlea (the snail shell looking part).  Most people have 2.5 solid swirls.  Emmeline has as the ENT put it "2 and a squeak".  There is also a very small vein in every one's ears that is about the size of a mechanical pencil lead.  The surgeon said he saw one once that was the size of an eraser.  Emmeline's is the size of this pointer finger.  Also, she has no right jugular vein in her neck.  So basically the vein in her ear is functioning like her right jugular.  Weirdo.
So what we found out was, she is eligible for a cochlear implant.  At first I thought, cool, she'll be able to hear.  The next day I thought, wait, maybe this isn't right.  The next day I thought, cool, she'll be able to hear.  The next day...you get the idea.
Don't get me wrong the technology is AMAZING and way beyond anything I could ever dream up.  But it's also scary.  First off they would have to shave the implantation site.  Silly I know but we have never cut her hair.  Ever.  I could just cut it before hand but I don't like the idea of doing it when someone else says I should.  It's the "I'm in charge" in me.  I'll get over it though.  What choice do I have.  "No thanks, I don't want my daughter to hear because I like her hair"?!
There are other risks that are totally out of our control so I'm trying to let go of those but they linger.  I am SUPER not keen on the idea of someone peeling back my daughter's scalp and ear and putting some BORG in her.  My very cool sister Katie says it will make her "different like a friggin super hero" and that sounds pretty awesome.
A big drawback for me is that even though she doesn't have much hearing in that ear right now, after the CI she probably wont have any so if it doesn't work then she will be dark on the left side forever.  Not really a choice I want to make for her.  The problem is if we wait for her to decide the benefit goes drastically down.  Right now her auditory nerve has been stimulated to a normal hearing level since she was a baby.  If we wait to put it in the brain will start to shut off the auditory nerve to that ear.
Either way we are in kind a time crunch since it will take at least a month to get insurance approval and then to actually get the surgery.  Then another month before we can get "online"  and then a year of intense rehab.  Did I mention Josh getting ready for his dissertation performance?  Yeah not the greatest timing since whenever I talk about something medical he gets this glazed look in his eye.  I think his brain might be full.  So that mean my least favorite thing.  Waiting.  I really need tons of mental support and "yes this is a good decision" to go through with this so I would rather wait a couple weeks and have that support then try and go this alone.  I just wish Emmeline could tell me.  She trusts me and I REALLY don't want to betray that trust.

The external part.   It is help on via magnet under the scalp.

 The part in her scalp.  It sends signals via those little wires into her cochlea (snail shell) which then sends it to her brain

 picture of where everything goes.

Insert Clever Title Here "Holy Hole Batman" Or The Like

It's over.  Totally and completely over.  I never thought I would get to this point but I did and it feels amazing.  Our G-tube days are behind us.  Before the doctor even put it in I wanted to know when we would be able to take it out.  That darn tube and everything that went with it consumed my every thought for exactly 4 years and 5.5 months.  The tube is gone, the stitches healed and the tape worn off.  I am sure it will pop back into my mind ever once in awhile.  Like when any child picks her up and then slides her down the length of their body to put her down,  whenever she climbs over something, Whenever we toss her in the air,  you know,  all those times we had to call "tube check"  and make sure it was still in place.  Hopefully that will fade with time.
The day I took her in to have it closed was hard for me.  I was dealing with all my normal surgery angst  plus reliving that awful Halloween in 2008 when they put it in.   My goal was to do a recreation before and after kind of thing.  This caused me to have to think about my every move to try and remember when I took pictures before, so I could try and do the same shots now.  All the nurses thought it was really cool but looked at my weird when I would look like I was going to puke after the picture.  Give me a break!  I'm dealing with something here!
 Sadly I can't seem to find the most important  picture to me.  The very last one I took before they took her into surgery on that Halloween so long ago. Her last whole before the hole picture.  It is a much tinier version on the one of her laying sideways on my lap.  She fit was back then.  So very small.

pre op second belly button

 I put one of Emmeline's old G-tubes in her baby so I could show her what  I was going to do when we took it out.  While she was in surgery getting her tube sewed up I sat in the waiting area sewing up her baby.

 She thought it was pretty cool to ride the rolling bed.

 She woke up for a second and the promptly gave her some Lortab and she fell right back to sleep.  For 4 hours.

2008 post surgery

2013 post surgery.  I think it's pretty cute that she slept in almost the same position with her hand pulled up.

 She woke up crying once and would only calm if I kept my hand on her head.

 Then sleeping beauty awoke.

 Well, sleeping something awoke.

Her post surgery dressing

 No more stitches!

Awesome new abs!

This was going to be a much more well written post but my brain is shutting down due to our next big Emmeline adventure which is already starting up.  She likes to keep it interesting/busy.  So this is as good as it gets right now.

You Bring Out The Worst In Me

I am a good driver.  I have only had my car involved in 2 accidents my whole life and I wasn't even in the car for one of those.  I am hardly ever in a situation where I almost get in an accident.  This number has gone up drastically in the last four years.  I only have one thing to say about that.

Texas, YOU SUCK!!

OK, OK.  We all know I have WAY more than one thing to say about everything.

There I was driving back from the hospital.  Again.  We were at a new hospital today so I was being extra observant, about where I was and where I needed to go, when I came up to this interchange.


It's nasty with a bunch of lanes and levels going this way, that way and back around again.  It can be easy to get in the wrong lane if you're not careful and sometimes that can land you several miles of back tracking by the time you find a place to get turned around.  Needless to say, I made sure I was in the lane I needed.   The lady to my left did not but thought she did.

Here is a close up of the altercation in question.  Let's pretend I'm the car with the red dot.  Please take note that the arrows painted on the road and on a sign directly on the left side of the road say my lane and her lane can turn left.  So, on the other side of those two bridges (just like that little white car) I proceeded to turn left, into my designated lane.  She also turned left.  Into my lane!  Some yelling and gesturing ensued.  I wont say by who.

Listen lady!  (yes it was a woman)  Just because you chose the lane that went back around doesn't mean you can wide turn!  Your left turn only lane doesn't mean you get first bids on lanes once you turn! It means you have to take the closest lane!  I bet you failed math. I have never come so close to getting out of my car and going a little Burke County all over you and your pissy passenger!!  LEARN TO DRIVE!!!!!

I know she wont read this.  I think that is what bothers me the most.  She thinks I was wrong!  Me!  I don't ask for a lot in life.  I just want stupid people to KNOW they are stupid.  Is that really too much to ask?

Always The Flower Girl, Never The Bridesmaid

This past weekend the girls were in a friend's wedding.  Both of them.  Did I mention Josh was a groomsmen?  Well, he was.  It was an "interesting" day.  I'll just go ahead and say we will never agree for more then half the family to be in the same wedding again.  Even if we love you.  No, I should say, because we love you.
Isa was a pro as usual but Emmeline only liked how cute she looked standing up for 5 minutes at a time and then she was more interested in seeing how she looked upside down.  I fixed her hair a lot.
Josh got a free pass on child care for the day since he had to be with the groom and all.  Well, maybe not free.  I'll cash that one in later.
To keep Emmeline busy we did some of her oral exercises in the mirror.

Happy

Sad

Happy

Sad

She eve took a little power nap ;)

Sadly I got no pictures of them actually going down the isle because I somehow ended up being the child wrangler in the waiting area until the got through the door and then I couldn't exactly sneak in behind then :(  Josh said they were adorable and did a great job.
The flower girls got to come sit down after walking down the isle which was good.  Not good enough for Emmeline though.  I think I got to see about 3 minutes of the ceremony and spent the rest of the time with this.

Isa was of course an angel...when she wasn't bored.

With the cool chalkboard

Awkwardly we ended up right outside the front door just at the Bride and Groom came out and would have had their 15 seconds of privacy before everyone else followed.  So me.

Emmeline is more then a little obsessed with the Bride and Groom and she kept going up to them and wanting them to dance with her or hold her.  It was cute at first.

The girls were pretty wiped out afterward.  They danced VERY hard.

A Pro picture.

What If There Are Two Birds?

I recently downloaded the Disney Junior app for the iPad.  Emmeline really likes it because it will have 1-3 episodes of all the shows.  The one she has really taken too is Doc McStuffins.  I hate this show.  It's not that it annoys me like say, Barney does.  I dislike it for other reasons.

First, this kid might have a mental disorder.  She makes everyone actually call her "Doc"?  Is she a dwarf or a schizophrenic?  What is your real name?!

Second, The "check up" song really gets under my skin.

Time for a checkup - Time for a checkup. 
I am gonna Check your ears, check your eyes, find out how much you've grown. 
(Time for a checkup) 
I am gonna listen to your heart beat, fix you up - ready to go. 
(Time for a checkup) 
It's ok if you giggle. This will only tickle a little. 
Time for a checkup - Time for a checkup.

I have been to many a check up where not only did Emmeline NOT giggle but it definitely DIDN'T tickle.
Talk about misleading kids!  I can see it now, some kid who believes sweet Doc will go for their check up and then have their world come tumbling down because their vaccinations didn't tickle at all!  Also , doctors can't always "fix you up".

Third, as a child who slept with ALL my stuffed animals on my bed so none would feel left out, I do not think it is a good idea to have toys come to life.  I think is turns children into stuffed animal hoarders.  They can't give it away!  It's alive!  This was only made worse by the most recent episode to post on the app where a toy is shocked to find out she is in a yard sale.  She is confused and betrayed that her human friend apparently doesn't love her anymore!  "Doc" finally convinces her that if they confront the little girl in question they are sure to find out it was all a mistake.  And what do you know?  The little girl does say she LOVES her toys and would NEVER get rid of them.  Does Disney own A&E?

Lastly I find the sassy black hippo nurse offensive.  I'll leave it at that.

CAN YOU HEAR ME NOW?!

Yeah, I didn't think so.   I had noticed Emmeline's volume had gone up a bit and I was having a hard time getter her attention when she wasn't looking at me.  So I decided that among all the other stuff going on with Emmeline right now, we should throw in a sedated ABR.  It seemed harmless enough.  Her hearing hasn't really changed in 4.5 years.  I was wrong.

When the audiologist came out of the she told me Emmeline gave her a hard time.  She was sedated.   I was not so secretly hoping their machines weren't really working or that somehow there had been some interference.  After booth testing today I found out I was wrong.

Emmeline lost quite a bit of her hearing in her left ear and some in her right, her now "not so good" ear.    What does this mean?

Here is what is called the "speech banana"  in order to hear normal spoken voice your hearing needs to be above the banana.  Or in other words it needs to be between 15 and 25 dB.  Emmeline's right ear falls at 50 to 60 dB at the low frequency and 40 to 35 dB at the high frequency.  This means she has moved from a mild hearing loss to a moderate hearing loss.

In her left ear she is at 95 to 105 dB across the board.  So in her left ear she moved form a low moderate to high profound.  If there is such a thing.

So, to make this a plain as I can for you.  My daughter can't hear me talk.  According to the test.  Now, that being said, she responds to me.  In the test they did a part where the audiologist asked Emmeline to point at a certain picture on a card.  Doing this she would point at the correct picture at 30dB in the right ear and 80dB in the left ear.  Even with those better results everything will now change.  

At the end of March she will have an MRI and CT of her ears.  After that we can figure out what steps need to be taken in order to get at least 1 of her ears hearing consistently over the speech banana.  She may qualify for a cochlear implant or a BAHA for her left ear.  There is just no way to know until we can see what her inner ears parts look like. My guess is they are a mess.  Her right ear should be able to be aided to above the speech banana.  

I feel sick.  There is a lingering question in my mind that no one can answer.  

Will/when will she go deaf?

When I ask, I get the sad smile.  I know I'm not the first parent to ask that or to get their sad smile.  I also knew before I asked what the answer would be.  The thing I HATE to hear.  We just don't know. I don't handle "don't know" very well.  I'm a doer.  I might not like it but I will and can do it.  But first I have to know what "IT" is.

I feel defeated.  We can have some great days, weeks and months with Emmeline and then everything seems to hit at once.  I totally realize how terrible this sounds but I have been looking forwards to having Emmeline's g-tube taken out since they mentioned she might need one.  I have had dreams and fantasies about what it would be like for 4 years.  Now it's here and all this other stuff is really ruining it for me.  This was not in my dream.  There that's my self centered rant.  I know what I want doesn't really matter.  What matters is Emmeline and figuring out the best way for her to communicate.  I can be a grown up.  I know I can...I hope I can.

Um...No Thank You?

So we went to the surgeon appointment.  Emmeline caught on pretty fast to what we were talking about and did her very best to distract us with her hyperactive freak out but we were not deterred.  She did keep a VERY close eye on the surgeon when he was giving her the once over.
It was a pretty overwhelming visit.  I am used to things taking a good long while to get done in the medical world.  I mean, we once has to wait 4 days before they would even try to figure out why Emmeline couldn't breath.  4 days!  If I remember correctly breathing is kind of essential for living but hey, I'm not the "expert".  Anyway, you can imagine my surprise when the Doctor came in and asked if I wanted him to take out the g-tube right then.
I froze.  That thought hadn't even crossed my mind and most of you know, I try and prepare for any eventuality.  My anxiety failed me that day.  I had no idea what to do.  So, I did what any pressured feeling anxious introvert would do.  I chickened out.  I blamed Josh, I blamed Emmeline, I even put a little blame on Isa.  I, in all my bravery, could not say "I am not ready".  I totally and completely choked.
Not permanently mind you.  I still hate the thing.  I just couldn't pull the trigger.
 I didn't want to traumatize me or Emmeline by just holding her down and popping it out.  I've had to do some really unpleasant things to that little girl over the last 4 years and I just couldn't put that on my list.  At least not yet.  I have to give it my best shot to prepare her (and me) for this.
If that means bribing her with toys and treats then so be it.

The only problem with my brilliant present idea?  She asked for "a real animal"...

Really, Really Ready?

I have hated Emmeline's g-tube since they put it in.  Really, really hated it.  I spent hours and hours crying about it to anyone who would willingly listen.  As well as plenty who weren't so willing.  I hated everything about it.  The scarring, the smell, when it would get ripped out, cutting holes into clothes, the accompanying pump and paraphernalia, the reflux, oh the reflux, I hated it all.  Don't get me wrong, g-tubes can and do save lives.  Did it save Emmeline's?  I don't think so.  Josh thinks my hate for the tube clouded my judgement and that it really did save Emmeline.   Maybe it did.  I wasn't exactly thinking clearly for several years back then.  I just know how I felt deep down.  It was by far the most traumatic surgery for me and we've had many.  It is the only one where  I had an almost uncontrollable urge to burst into the OR and grab her off the table.  I spent the whole procedure sobbing in the waiting area.  I hated it.  I never made "peace" with it.  We were never friends.

Today we are meeting with a surgeon to schedule getting it removed. After all this time, it is about to be out of my life forever...I don't know if I'm ready.  Ridiculous I know.  The fact is, I don't think it saved Emmeline's life, but could it in the future? Yes.  (I literally just cringed typing that).  I have hated it for so long.  Hated it, but knew deep down that it was a HUGE safety net.  My daughter can never starve,  she will never not take her medicine, and she recovers faster from illness.  All of these things keep her safe. They aren't the biggest problem for me though.  What is?

Emmeline loves her tube.

It's been a part of her for as long as she can remember.  It's HER tube.   When we talk to her about getting it taken out she protectively covers it with her hand and says "No!  My tube!" As someone with anxiety I can understand her reservations.  This is all she has ever know.  People are telling her she doesn't need it anymore and life will be better without it but she's not buying it.  It's all she knows.  She feels safe with it.

Being a parent is hard.  I have had to make countless decisions for Emmeline because I think they are in her best interest.  Most of the time she doesn't know.  They aren't things she sees. But she'll see this one. They are always hard for me.  I do not like making decisions.  Not even little ones for myself much less life altering ones for someone else.  I had to choose to give her the g-tube and now I have to choose to take it away.  She trusts me and I can't help but feel I am betraying that trust.  I can't help but wonder.  Are we really, really ready?

Yoga Challenge Complete

I did all 21 days.  Without skipping.  Well, I skipped Sundays but I didn't skip any workouts. I feel at this stage in my practice I can give an accurate opinion on yoga.  You know, now that I'm a pro.
I am still not crazy about yoga.  I don't hate it as a whole now but it definitely isn't my favorite.
Some of the days were a complete waste of my time.  There were 2 routines in particular that I could have done without.  they were both relaxation routines   We all know how much I love to be told to calm down right?  Right.  Probably wont do those again.  Not for actual yoga anyway.
I think my favorite was the core day.  My abs were shaking when I was done.  There was also one instructor in particular that always kicked my butt.  She did the "fun flow"  that I have mentioned before.  I don't think that means what she thinks it means.  I also would have preferred her routines on mute.  She was extra annoying about "feeling how cool that was"  and "inhaling through the front of your heart"  and "exhaling through the back of your heart".  What the what?!  You should get your heart checked out lady. Or any heart really.  I'm not sure you really know how they work.
Overall it wasn't a total waste of time.  My hips aren't hurting as much,  I have too much in the rear area to really get into Bakasana without tipping all the way over, and I found out my left side is much more flexible and stable than the right.  There are days I will probably do again.  But definitely on mute.


The super good thing about doing all 21 days?  Josh talked me into getting this outfit as a reward.  I needed a good pair of statement pants.  Isa told me to "pose".  The celebrity "I kinda have to pee" pose appeased her.

One Of Isa's Favorites

I would recommend a parental run through just to make sure it wont freak out your littler ones.

Bossy Bullfrog!

Yet another reason Wil Wheaton is awesome!

The Secret Of NIMH (Martin)

No Thanks, You Can Keep Your Lung Cancer

I can't go on real runs.  Well, I could but I think we all know my stance on choosing between sleep and exercise.  Anyway, I have started running the stairs outside our apartment.  I can do it whether or not Josh is home because if the girls need me I'm right outside the door.  And boy have they needed me mid run.
I try to do it in the morning so I am not competing for the stairs with other people.  Well, most people.  Apparently the smokers are going nuts after going all night without smoking and they come out of woodwork.  One woman came come from her 3rd shift job and told me as she trudged up the stairs while puffing on a cigarette, that she wished she was doing that but just needed some motivation.  How about putting out that cigarette for starters?  Because not only does that make it harder for you to get going it actually makes it harder for me to move as well.  Yeah, Thanks.
There is another neighbor who no kidding, came out and smoked a cigarette, went back in her apartment and then came out and smoked another one before I was done.  I run for 20 minutes.  REALLY?!
I think there should be smoking sections in life.  You can only smoke there, no where else.  Does that infringe on your rights as a person? I don't care!  I mean, we have special areas to take your dog to poop.  Poop wont even kill me.  But you might.  I'll trade you.  Smoke for Poop?  Oh, it's too cold for you and you don't want to go all the way out of the stair well to smoke?  Too freaking bad!!!  This is the outdoors, and you my non friend are ruining it for everyone!   So go kill yourself on your time and not while I'm trying to be healthy!  Can't you see I'm miserable enough doing this without your nicotine floating into my already overtaxed lungs!?

Yoga Day 8

Today I learned not to do 20 minutes of stair running before doing a 45 minute "fun flow".  It made it VERY not fun.

Yoga Day 6

I just did day 6 of my yoga challenge.  It was titled "Tension Release Hip Openers".  MY HIPS HURT!  I can't tell if they are open yet or not. Or honestly what that even means.  I'm not sure I like this day.  Luckily I only have to do it once in the 21 day cycle.  Time to go run my stairs with the Avetts.

I Canned!!...Or Jarred Or Whatever...

Josh got me a pressure and water bath canner for Christmas!!  I am super excited about doing some canning.  It would be more fun if I could grow my own produce but maybe later.

My first attempt was with salsa.  Other then the fact that I didn't cut my peppers and onions quite small enough I am thrilled to announce that all 7 jars sealed!! Now that I have had this nice morale booster I can try something more fun!  Like soup!  Thrilling I know.

Yoga 21 Day Challenge

I don't like yoga.  At all.  I don't find it relaxing, I can't breath, my hips hurt, the "moaning"is NOT happening, and I constantly fall over.
That being said, almost everyone I know that has done it loves it.  Especially my mom.
Over Christmas she had some Kohl's Cash that was set to expire at midnight.  We all know I can't tel free money go to waste so I got on their website and found a 21 day Yoga Journal challenge.  It was supposed to be a nice variety that was good for all levels.
Since I'm old and I should give things a fair shot before I die, I decided to try this.  21 days straight of yoga.  I just did day 4.  Some days have been really hard, some super easy.  It's nice because I really have no idea what to expect so I can't really dread it properly.  So far I have only collapsed out of 1 pose, and fallen out of 2.  Pretty good I'd say.  Isa even joined me yesterday.  My breathing is still TERRIBLE.  I'll keep you posted.

Some Things I Love

Kissing my sleeping babies right before I got to bed
Fully leaded Dr Pepper
Heavy blankets and the fan on at night
Being done working out for the day
A freshly vacuumed floor
The last few minutes of my shower when I turn the hot water WAY up
Showering without interruption
Watching Isa dance
When Emmeline holds my face nose to nose with hers and stairs into my eyes
Watching Josh teach the girls
Hiding and listening to Emmeline play pretend with herself
Honey, sunflower seeds and blueberries
My hair long
Cuddling in PJs until well past lunch time
Having second breakfast
Surprise packages in the mail


Among other things