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)