A Little Bit of Laughter

The past couple of weeks we have had our ups and downs with Sadie's hearing.  Her aids are continuing to make awful feedback noises (whistling), even with the new ear molds.  So, we are eagerly (and not very patiently) awaiting to see if we will get approved to obtain some very high tech hearing aids, made especially for babies.  We have to see if First Steps (the state run program for children with disabilities) will pay for them since they are very expensive.  Please say some prayers for us as we continue to wait. 

Although we have had the hearing aid set back, I am excited to share that we have really started to see some great strides in Sadie's hearing.  She has started to turn her heard in the direction of sounds!  While this may not seem like a very big deal, it is huge in the world of hearing loss.  It makes Troy and I more confident that she is actually hearing noises.  She still isn't consistent, as sometimes she will turn her head and other times she won't.  But I truly believe she is hearing me now, although I should probably get used to her ignoring me sometimes...lol!

Posted below are just a few new pictures, as well as a video of her playing with her Uncle Keith and Aunt Nell.  You can tell by my brother's "sounds" that she is hearing and she thinks he is the funniest guy ever.  Hearing our baby giggle has to one of the best moments we have shared with her yet!  I hope you enjoy it as much as we do!

Welcome to Holland

When you have a friend or family member who has a child born with a disability, do you ever wonder what that must feel like?


A friend sent me this article when she found out about Sadie's hearing loss.  I cannot even begin to express how true this poem rings for my family.  Everyday, we realize more and more how special our little Sadie is!

 

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

by
Emily Perl Kingsley

Pump up the Volume

We met with the audiologist today to have her turn up Sadie's hearing aids.  I haven't been noticing her react to any loud sounds, so we thought it would be best to turn them up.  They were set pretty conservatively to begin with, so now they are just up to where her ABR says they should be.  I still haven't noticed a ton of reaction from loud noises, but the audiologist feels like she is hearing.  My fear is that her hearing is getting worse.....let's all pray that is not the case.  And now we have to battle the feedback that comes with louder volume.  She is getting new ear molds tomorrow, so hopefully that will help with the feedback. Otherwise, we are just going to have to work on her sitting up on her own so she doesn't brush up against things which causes the feedback.