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The scent for summer "Essence of a hospital"

3/25/2013

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Well the smell says it all.  Our neurologist is the nicest guy.  I really like him.  But Bentley wouldn't smile for him once.  Not even a grin.  I guess kids can even smell that they are in the doctor's office.  I was hoping it was still too early for her to learn that.  Oh well.

The doc reassured us there were no gross abnormailites with the MRI.  Always good news.  This may rule out a couple of the worst muscular dystrophies, but not all.  He is going to refer Bentley for a muscle and skin biopsy.  He explained why for each, but I don't want to butcher what he said so I'm not going to try.  It all sounded pretty interesting.  Both of the lab tests will be run at other facilities outside of Alabama.  It could take another month or more to get them back after the biopsy is done.  

Now we wait.  We should get the biopsy done soon.  There is no need to wait, except on the physician doing it.  We still have yet to receive word on any of the genetics tests.  We will keep plugging along as usual.  

**On a side note.  Bentley and I spent a few days last week down in Dothan getting to know our future home.  She seemed to like it.  Everybody was incredibly friendly and showed her a ton of love and attention.  We're going to like our new home!  Little Miss Peanut here we come.  Check out the who donated the wagon we used at Children's today.  Thank you Dothan.

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glass elevators and expensive sandwiches

3/13/2013

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The second week of March Bentley had an MRI.  This was a big deal due to the potential muscular dystrophy.  B needed to be anesthetized for the MRI, but we learned that typical anesthetics would send her into cardiac arrest.  Therefore, she got a special cocktail.  

This MRI had to be done at the new Children's of Alabama downtown.  What a beautiful facility.  I love the atmosphere in a Children's Hospital.  The level of friendliness and fun is way awesome.  

I love friends.  Right as we were stepping on the big glass elevator we had a friend who works at Children's show up.  She came to work early to help us find our way and add a little slice of comfort for Lindsay. THANK YOU! You were a huge help.

Thankfully, the test went as planned.  No problems.  I got to see a couple friends who work down in radiology.  I finally got to see the inside of the prettiest building in Birmingham.  Lindsay didn't find a new hospital any more comforting than an old one.  The market store place made me some great breakfast sandwiches.   

It was a good day.

We have also received the results already.  From what Lindsay relayed to me, the report shows no abnormalities and her auditory nerve is there (a small concern going in).  Which would mean we stay on track towards cochlear implants.  Again, it was a good day. 

Thank you again for your thoughts and prayers.  Bentley is the most awesome little girl.  It is obvious she has our laid back yet determined attitude.  God did good on this one.  I couldn't have asked for anything more precious.

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My what big ears you have

3/7/2013

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The first week of March was a big week for us.  WE GOT HEARING AIDS.  I was very excited about this.  Not because it will let her hear, it's obvious she still can't, but because it means we have started something.  The plan is in action.  

The HEAR Center really is an amazing resource for the state of Alabama.  I've only been twice now and I love it.  Maybe it's still the "honeymoon phase" of the relationship, but so far so good.  Since, Bentley won't be wearing hearing aids permenately they provided her with a loaner pair.  They are pretty and pink.  Very cute.  Bentley will have to wear them at least 6 months while also attending a very strict regimen of speech therapy leading up the cochlear implants.  

So far they squeal like a stuck pig, but we're figuring them out.  Fortunately for us she can't pull them off and chew on them yet.  I hear that is annoying 30-40 times per day.  

We also started at The Bell Center (www.thebellcenter.org).  I'm already blown away by this place.  I am equally impressed by the therapists we have met and will use through Hand in Hand and AIDB.  They have all been awesome.  I am pointing out The Bell Center mainly because of the resources they have, and the breadth and depth with which they provide therapy.  We are so excited about becoming a part of the The Bell Center family.  I get to take Bentley twice a week.  When we move to Dothan this summer, Lindsay will be making the trip back to Bham for speech therapy at the HEAR Center as well as The Bell Center each week.  Maybe I should get a Prius.

I need to go ahead and give a shout out to our families again.  They have been awesome lately.  They have been here so much we even got a letter from the HOA about being parked on the street too much.  Lindsay got upset because I am actually on the HOA board.  HAHAHAHAHAAHA.  I thought it was hilarious (i knew it was coming).

Oh yeah.  We got the ERG report back.  According to some flashing lights and sticky electrodes, Bentley is blinder than a bat.  Unfortunately she lacks the sonar bats have to navigate in a cave.  I'm pretty sure she can see some light, such as the sun, but it's too early to know to what extent.

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    I will be writing most of these.  Justin, that is, the dad.  Lindsay will provide her input.  

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