2013/04/20

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.

2013/04/18

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.

2013/04/12

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.