Three.

So we know Bentley can't hear us.  Probably can't see us.  What's next?

We met with our ENT.  Nice guy.  Confident Bentley will be a cochlear implant candidate.  There's a whole process to getting them.  First steps we have already set up.  The major part is he doesn't implant until she is at least 12 months old.  Ok.  I can handle that.  I understand.  Hearing aids for 6 months, thanks to the FDA.  That part is understandable for some, silly for others.  You can guess which side I land on.  The good part is we don't have to buy them since they probably won't work.  We get a loaner pair for a while.  Pretty sweet of them.

Later we went back to the HEAR Center for hearing aid molds.  Fun stuff.  I asked if she could make me a custom pair of molds for shooting.  Sort of a joke, but not really....she didn't get it.

We also met with a couple of state organizations for different kinds of therapy and such.  I'm encouraged there.

We got the ERG thing.  You remember, to check for peripheral vision.  Of course the tech wouldn't tell us anything.  The doc was not overly friendly.  And all day everywhere we went people referred to Bentley as a boy.  Ok, maybe some people think Bentley is a boys name.  I've never met one so I don't know.  I think Bentley is feminine and pretty.  And as far as the car goes, she was not named after a luxury vehicle, but if she was, it wouldn't change anything, cars are girls. If you would like to debate me on that you obviously aren't a car person, and need to watch Gone In Sixty Seconds for a tutorial.

We still don't know about the peripheral vision part.  I think she has some, Lindsay doesn't.  Decide for yourself.

Last doctor appt to date is a neurologist.  He was incredibly nice, and thorough.  Very easy to understand, in terms of clarity of explanations.  He pulled up pics on google to show what protein he felt was involved in all of this.  He did a great job of conveying the possible severity of Bentley's potential disease without sending us into a tailspin.  Basically, he feels she may have a type of Congenital Muscular Dystrophy.  A particular spectrum known as alpha-dystroglycanopothies.  I'm still learning.  We won't know for sure until following the MRI, muscle biopsy, and genetics tests.  We have no official diagnosis of this yet.  So, take it for what it is, a hypothesis.  I'm praying the doc is wrong.  However, he seems really smart.

That's where we stand.

Summary: blind and deaf, with a couple possible reasons why

Still lots of unknown.  Still lots of questions.  Learning more every day, and learning nothing.  We begin working with The Bell Center next week.  I'm very excited about that.

Hope this finds you well, answers all of your questions, and doesn't drive any english teachers crazy with my writing.  Thank you everyone who has been praying for us.  Please focus on Lindsay and Bentley in your prayers.  We love the food, I'm finally gaining weight.  Thank you.

So, for entry numbero dos.

A few days after learning about Bentley's hearing our pediatrician called and had scheduled an EEG to check for seizures and such.  This was scheduled for the same day as our Genetics appt.  Convenient.

We did the genetics appt.  Nothing spectacular as you can imagine.  Those guys are smarter than push-pops but their personality is that of vanilla bean ice cream.  They ordered ten million labs, and Bentley was so small we couldnt even draw them all on the same day.  So genetics will take a month or two to get back.  Now we wait.

Following the labs we got to meet Doris.  She's the only name I'll drop because, well, her name is Doris and she was a sweetheart.  She was Bentley's EEG tech.  Doris was very thorough and explained everything very well.  She let us see bentley after she had attached all the electrodes. I got a great pic.  Nothing remarkable on the EEG.

On the 12th of Feb. we had our ophthamology appt.  I'll admit it.  I was very anxious going in to this.  Terrified actually.  The thought of Bentley only having 3 of 5 senses made my stomach turn inside upside outdown.  We took more pictures outside of Children's South, to help ease my stomach.  Walked into the waiting room and saw an angel.  I knew it the moment I saw her.  A little girl with cochlear implants and bottle top glasses.  I don't know why, but just seeing her and her mom made me feel more comfortable.  I think it may have struck fear in Lindsay, but she would soon see it otherwise.

We were called back to see the MD.  He quickly gave B the once over, and then squirted the dilation solution in her eyes.  We had to wait 25 minutes to hear what she could see.  While sitting in the waiting room Bentley came to life.  She started smiling so much.  I still haven't seen her smile so much in succession as she did during those long 20 minutes.  While we were adoring her, the angel and her mother left.  Lindsay was a wreck.  Don't let her lie to you.  She would hold it in for a minute or two and then let a wave pour out.  She knew it wasn't good.  She had a look of despair and helplessness on her face, it broke my heart.  I tried to distract her with Bentley's gazes.  I was holding her.  Bentley kept looking up at us as if to say "I'm fine, you guys are the best parents ever.  I don't know why you're stressing."  About ten minutes after they left, the angel returned.  Not because she wanted to, but her mom did.  Her mom walked back into the lobby and right at Lindsay.  She stood there and just said, "I'm praying for you.  I know the look on your face.  I had it once."  She proceeded to tell us her story.  One of heartache and despair for a child.  Mom and her daughter were such a gift that morning.  They offered a spot of comfort and hope, when all seemed lost.

At this point I suspect it was obvious to everyone in the waiting room that we were not expecting to get good news.  We walked back to see the doc when they called our name.  He inspected Bentley's eyes to find scarring over the macula of her retina.  He informed us that this will result in permanent loss of her central/focal vision.  It appeared to be old scarring as if from early in pregnancy.  So, there was no indication it was due to something after birth that we could have done.  I guess that was good.  He also added that there was a chance Bentley could have some peripheral vision.  That would require a further test to check for at this age.

As we left, I made an appt for an ERG to check her peripheral vision.  Lindsay cried.  Bentley smiled.  The lobby was giving us those looks of "i don't want to look but i do i'm so sorry i'm looking but i just cant turn away." Another sweet woman stopped us on the way out to say she was praying for us.

We went home.

****Forgive me if some technical aspects of my information are slightly off or wrong.  I'm telling it as I remember it.  I'm trying to be as accurate as possible and not just say "she's blind" even tho there may be a small chance of peripheral vision, as an example.