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

Why I Hate Posting On Vacation

Let's be honest.  Most people don't want to read a non photo blog post.  Photos help keep people's attention and entertain.  Well, I have no photos.  At least not on this computer. So, NO PICTURES FOR YOU!
We have done some fun stuff though.  We did manage out goal of getting to NC in one day.  It was brutal at times but we have become real road warriors.  One of the first things we did when we got here was celebrate my 32nd birthday.  I feel like I'm 60.  My body is continuing to fall apart.  I wanted to come up with something fun and out of the ordinary to do so I could use the P and R quote "In my defense, it was my birthday and I really wanted to do it"  but being the special brand of lame that I seem to be lately, I couldn't come up with anything.  Well, nothing that I wouldn't have to hide from my kids for 11 years or so.  I did come VERY close to confronting my fear of non pool water be doing a polar bear plunge in a lake at 10pm but that didn't pan out.  AT least I did 2 things I have always wanted to do this year.  I did a food challenge, and I took a ballet class.  I guess that makes it a success?  I'll go with that.
Next we went to see Uncle Quentin and Aunt Lauren.  It was a TON of fun.  we did lots of baking and went to see Christmas lights.
When I got back to Boone it has been baking and assembling gingerbread houses.  I am VERY tired and we haven't even gotten to Christmas Eve yet!
Becca and Joe got in today and Abby and Tadd get here tomorrow!  It's going to be a full house.  Let's see if we can all play nice ;)

One Child's Trash...

The girls had SO much fin in Arizona playing with their cousin Charlotte.  I'll do a post about that later but for now I had to share this little bit of cuteness.  Charlotte has a plastic slide thing.  Emmeline called it her "castle".  She would sneak outside to play on it whenever she got the chance.  

She really loved the slide. 

See

So when I went to take out our trash this morning and found this little gem being thrown away because it was dirty, I was all too happy to give it a home.  So like many mothers would, I dove for it.  Literally.  Banged/cut up my shin in the process but it was totally worth it for  the excitement on her little face :)  It isn't quite as cool as Charlotte's but she could barely wait for me to clean it.  She stood right next to the door waiting and when I told her it was ready she ran past me and climbed up.

Then she invited her sister. 

 It took a lot of begging to get her to look up for this picture.

2 Good Years

Well, we made it a good 2 years without pneumonia.  I was hoping we were past that stage but when Emmeline came stumbling into our room at 5am on Sunday morning with a fever I just had a gut feeling.
Emmeline doesn't usual get fevers.  Unless she has pneumonia.  We were thinking of waiting a bit before we headed to the ER, but when she threw up the Advil we gave her for her fever I packed the bag and headed to the ER while stayed at home with the still sleeping Isa.
Thankfully they listened to me when I told them that she has a history of pneumonia and that was the likely culprit.  That way we were able to bypass the yucky throat scrapping strep test and go straight for the chest X-ray.
The doctor seemed pretty surprised that I thought she had pneumonia though since her lungs sounded clear.  Sure enough though, there was a spot on her lower left lung.  I think he was trying to appease me with the X-ray in retrospect and wasn't expecting to see anything on it. Don't question me OK?!

Here we are waiting with Donald for radiology.

 Not my best planning but when we ran out of pulse ox sensors about a month ago I didn't re order.  She has been doing so well that I was trying to wean myself from my addiction to having the sensor on her at night.  Anyway,  I sure wish we had some now,  especially last night.  There was no way I was going to put her in her room alone without it so we just pulled her mattress into the living room and then I slept on the couch.   It was also convenient since she needed Advil, antibiotic and breathing treatments during the night.

She is doing better today but since she is also getting over likely strep throat it is taking a bit longer then usual.  They just didn't run the actual test because it's so awful and it would have called for the same antibiotic as the pneumonia.  

Good times...

I Made My Money The Old Fashioned Way

This guy is SOOOO funny!  Definitely one of my favorite side characters on TV.

These are the best ones I could find on youtube but you should really just watch EVERY episode he is in.  Over and over.

Mud

Because I think she would like this as much as her gifts.

HAPPY BIRTHDAY TERRA!!!!!

And for a touch of Megan.  I am pretty sure this is the camping trip when I spotted Big Foot.  For Real.

Do Trees Poop?

Last Monday evening I got one of the best surprises EVER!  Josh had been telling me for weeks that he wanted me to clear out our schedule for a few days around Halloween to do some family stuff.  It was a little weird since it was a Monday-Wed that he wanted but since he had been gone for 2 weekends I assumed he was just trying to get in some make up quality time.
I however, could not reschedule Emmeline's assessment wither new PT so our fun times were supposed to start when we got home around 3:00pm.  When I got home I found the COOLEST thing in my living room!  My sister Katie!!!

Anyone who knows me well, knows that I love a surprise pop in.  Well...from people I like.  It was a GREAT surprise since Katie and I don't get to spend a lot of time together.   I screamed like a little sorority girl at a reunion, which was a little embarrassing.

Shortly after she got here we had to take Isa to dance.  There is a park across the street so we headed over there to play and Katie got some really cute shots of Emmeline.  She also came with gifts for the girls including this shirt for Emmeline that saying "Don't need a permit for these guns".  She really liked it.

 I believe this is right before we went to the Fort Worth Botanic Gardens the next day.  Katie also got Emmeline that adorable penguin hat.

 We found out that Isa is finally tall enough to no need a booster anymore so we tried having her sit in the middle so Katie could have more room.  She and Emmeline fought like crazy so we had to move Katie back to the middle.  This of course enabled her to capture this gem.

 Katie brought this hat for Isa.  It took quite a while to convince her not to take it to Girl Scout camp this weekend.

 Aunt Katie with the girlies.

Emmeline ended up getting really tired and just kind of latched onto Katie's leg.

Until she picked her up for some cuddles.

We went trick or treating on Wednesday night.  I was not planning on dressing up which is why my costume isn't great but after seeing Katie's costume I did my best to make one to kind of go with it.  

In case you can't tell what we are.

 It occurs to me now that we should have done my loud face with them off and then me doing a thumbs up or something when the mittens were on, so I could show how quiet they are.  Oh, well.

I also think I ended up looking more like a manager at McDonald's then Charlie but Josh doesn't own any short sleeved dress shirts.  Either way, we are pretty awesome!

 It isn't really Halloween without some yummy treats like Haystacks.

 Also some ghosts.

 One last cuddle.

It was SO fun having her visit.  Just the pick me up I needed.

DIY Costume Props

I got too much stuff when I was thinking of how to make Dobby's ears.  I ended up not needing the dark brown at all.    

 I basically folded the felt around the headband and lined up the two opposite corners.  I glued that part first so I could keep everything lined up.  I will also say here that I ended up not keeping it on this hard headband.  Once the felt was glued it wouldn't lay flat so I switched it to a stretchy headband.  

 I just glued around the edge and trimmed off any excess fabric so get the ear shape I wanted.  Then bunched up and glued like CRAZY

 Here is the elf "posing"

 "Are you still here?"

 Next we did the wands.  I found a very cool tutorial for these wands here.  It calls for wooden chopsticks, hot glue, beads of varying sizes, and several shades of brown paint.

First cover the area you want to be the handle in hot glue.  I did not get a picture of the next step but when the glue is warm but not hot you roll it between your palms to shape it.  You can add several layers, which is what we did to build up a bigger handle.  Then add what ever texture you want on your wand.  We rolled some in beads and some we just made textures with more hot glue.

Here are a few finished but unpainted. 

 Then paint them in whatever shade of brown you would like.

 If you're lucky you'll get to have a big mess like me.  I had already cleaned up twice by now.

 Our pile of painted wands.

For Hermione's scarf I have not tips.  Other then get a sister who knits and crochets to make it for you ;)

What Do You Do When Texas Has A Cold Front On Halloween? Free An Elf!!

Isa has wanted to be Hermione for Halloween for years.  Due to some promises she made about wearing a certain costume if I bought it for her, she hasn't been able to do it.  This year I wanted to make sure she got to.  Then someone made the suggestion that we dress Emmeline up as Dobby.  It was genius!  It's always too hot here on Halloween to wear your traditional fall costumes so I thought Dobby would be perfect since he only wears a shabby pillowcase.  

Texas tried to screw me again.  A nice cold front was set to move in the weekend of our Trunk or Treat.  Costume ruined.  You can't overdress a house elf!  It messes up the whole attitude of the costume!  Then, two days ago I got a great idea!  I'll free Dobby!!  After he gets freed he collects clothes!  Socks and hats mostly but that was all I really needed to trap in body heat.  Thus Dobby was freed.

Hermione and Dobby together.  This shoot was done on the second day after I eliminated some of the heavier hats.  Emmeline was a lot happier about it then.  What a cute little activist Isa makes :)

 Emmeline wasn't thrilled when I asked her to put her thumbs down so people could see the sign.

 Isa jinxing me.  She was very cute and was walking around the house with her wand saying "stupidity!  stupidity!"  Being the purist that I am I eventually let her know it was "stupify".

 A happy free elf.

 The back of the sign.

Join the movement!

We did the library spooky story time this morning   If there is one place that could really appreciate this costume it was the library.  All the librarians LOVED it!!  I'm a little worried about trunk or treat tonight as no one there is as hard core as I am about HP.  Either way they are darn adorable.  My favorite costumes EVER!  

We had a slight costume malfunction when we got to storytime.  I had to remove Emmeline's sign to buckle her into her car seat and when we got there I couldn't find the other string anywhere   I ended up using a straw.  It stated on but was a little too short.  She wouldn't take it off when she sat down.

 Story time Hermione

Isa and I had a blast making the Dobby ears and the wands.  I'll post about those soon.  I also did not realize how badly Isa's book shelf needs to be repainted.  Yikes!