Sunday, November 25, 2012

Before the Buzzkill

Hello there!  Sorry I've been MIA.  I think we've been in the hospital once since I last wrote and, other than that, we have traveled out of state almost every week but one for about a month and a half.  This last week we traveled from Indiana to Savannah, GA so that the professor could present a paper at a conference while the girls and I vacationed and caught up with some of the other professors' families.  once the conference was over we had a brief family vacation in Savannah.  It's so nice to get away and hang out all alone as a family of four.

On our way home from our trip I drafted a post about Daisy.  It needs to be proofread and prettied up a bit so, I thought before that buzzkill of a post, I'd share a few photos of what we've been up to recently.

We learned about a year ago while working with our wonderful VIPS outreach professional (Hi, Annie!) that Aria is able to see really really really bright red light.

Since then, we've been working on helping her to learn to see other types of light too.  We've worked hard at this and Aria is now following plain old yellow light with her head and enjoying activating her own lights with switches.  It has opened up a whole new world for her.

She still loves her bright red lights the best though.  Here she is activating her favorite red light with her chubby belly:

And here she is attempting to burn out what little vision she has by basically sticking her eyeball on a light while activating the button with her arm:

Daisy turned three while we were in Savannah and for her birthday she got to go on a horse drawn carriage ride through the city.  This has become a birthday tradition for our princess since Kevin has had a paper accepted into the Southern conference for his field every year of Daisy's life so far (her first birthday present was a ride on a carriage in Charleston, her second birthday was a carriage ride in New Orleans, and this year was Savannah).  I just think it is so very important that we provide our children with experiences rather than material things as much as possible...and I am so glad that we are able to do so. 

Aria rode on the carriage in Charleston in my belly and in New Orleans she was wide awake and enjoyed the breeze and smells of the city.  Let's just say that she has absolutely NO recollection of this year's ride.  You can't blame the girl.  The ride took place during her nap time! 
While Kevin was working late with his colleagues one night during the conference I was able to share some very special time with Miss Aria after her big sister fell asleep.  I just love this little girl so much...and she loves kisses.  They are apparently hilarious.

And for your viewing pleasure, here is a photo of our whole crazy family on our annual carriage ride. We are a bit of a motley crew but I still think we're pretty awesome.
You might be wondering what that thing is on Aria's head in these photos.  That's her fancy new BAHA.  It turns out once you realize that the problem with your child's hearing might be that the ENTs at a particular hospital simply think your kid isn't worth even trying the newest technology on...and when you go to a different hospital with ENTs who will listen to your dreams and concerns...and when you get referred to an audiologist with the appropriate training for a child like yours...and when you pay out the ass for a fancy new aid (thanks for nothing, insurance.)....Well, if you are a big enough bitch and all those stars align you can get your kid hearing quite well.  In our case, you can get your kid hearing normally.  Yup.  Normally.

And then you get angry at people for letting your child be with no hearing for one year, and only a small amount of hearing for 9 months just because they made unfair assumptions about your child's capabilities.

But the hearing aid/hearing debacle is a different story for a different time.  I also need to write about her eyes.  I have a lot to catch you guys up on but it might be awhile.  You see, Aria and I are getting ready to take a very very very important trip to see a specialist out East.  I'll have more information to share after our December 19 appointment.  Well, I'll have information for you if we get good news.  If we get bad news I might just go for a long drive in my car to cry it out and forget it ever happened. 


Jen K said...

Aria can hear normallly? That's awesome!! Can't wait to hear what else is new!

Leah said...

Those naysayer ENTs? They suck. They suck hard. I hope karma bites them somewhere very uncomfortable. Aria is exactly as worthy as any other kid. And her squeaky giggles? Absolutely adorable.

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PJ said...

That little laugh of Aria's is about the sweetest thing ever:)