Wednesday, August 29, 2007

Look.

The transmitter on his head is attached via a magnet. The ear level piece has a microphone to catch sound and a computer to code out the sound before sending it up and in.

Ethan and I were at the meat counter at our local grocery yesterday, waiting without the slightest shred of patience for our deli sliced ham and cheese. He has this really enthusiastic and slappy way of communicating, or hitting with gusto. Turning 2 years old has somehow taught him that this is a fun and acceptable way of getting my attention. His batteries on the processor had just died so I was using sign (and voice) to let him know that the hitting game wasn’t really in the cards.

Our interaction garnered some attention, particularly from the friendly woman standing next to me in the meat counter roundup. She smiled broadly at Ethan and said something pleasant to me about the terrible 2’s and what a cutie I had. Then Ethan turned his head. The colossal device that is the transmitter and ear level piece were easily visible. At that instant I noticed the friendly woman quickly turn her glance to the cheese, afraid to be caught staring I’m sure. I understand. It hurts.

On a different day I saw a man in the same grocery blatantly staring at Ethan’s headgear, he must have done a triple take of stares before finally shooting me a dirty look. I was so shocked by it that I just stood there dumbfounded; I should have grabbed a piece of fruit and hurled it at his big ugly head. Later I realized that he probably thought that I had placed a blue-tooth phone on my son’s head.

A child at the library excitedly ran up to me a couple of weeks ago, taking a short break from story time wherein he was seated next to Ethan. He asked me happily “Is that a hearing machine on his head?”

I wish there were more adults in our day-to-day world who were as uninhibited and curious as the little boy at the library.

Sunday, August 26, 2007

August in Pictures

Ethan found his bliss.


His new game, the pillow toss.


Happy to be climbing the kitchen stool.



Thursday, August 23, 2007

Bloggy Love





I have recieved this award from Eileen over at A Life of Triggers. Thanks Eileen!

I now have the task of selecting 5 rockin' girl bloggers to pass this along to. I haven't "met" (in a cyber sort of way) the redneck, but feel I know her just the same. That's the beauty of a good blog!

Five rockin' blogs written by rockin' girls:

Redneck Mommy - she's my kind of gal, lays it out there in a no holds barred kind of way and she's funny as hell.

Slouching Mom - one of the best writers I've ever seen online, enourmous skill and heart to match.

one plus two - regularly inspires me to be the best person I can be, takes social justice issues to a whole new level. can make me weep one day and throw my fist in the air the next.

Chicken & Cheese - gorgeous and honest writing, should be published and making millions.

Where's My Cape?- smart, hilarious, cool, fun, can't live without, am totally addicted.

There ya go, happy blogging!

Monday, August 20, 2007

Semantics

I would like to start this post by first saying that Ethan's cochlear implant is currently working well and we feel that he is very successful at hearing with it.

That said...

I am a little preoccupied with the most recent speech evaluation conducted by the experts at our center in Cincinnati. This is in no way an indictment of their abilities, they're all so skilled and experienced. I'm just coming to terms with the language used in parts of that report.

The report said "severe language delay".

You guessed it, I'm all whacked out because of the term 'severe'.

I don't write about Ethan's progress in the area of speech because there is really very little to report. I suppose that his current therapist (who has a highly trained ear for the subtleties of language development) might beg to differ, so let me break it down for you.

Ethan has not been making consonant sounds, other than the occasional h or m sound. He has never made the b or d sounds, or any other consonants for that matter. He squeals and screeches and grunts. He is quite good at mimicking patterns of sound, including music. But he's not making much progress with actual speech.

Others his age implanted at the same time not only have the ability to form consonant sounds, they are saying actual words, lots of them. This is what has led his doctors to be concerned about the potential for verbal apraxia. This is further backed up by the fact that his brain shows some damage from the virus in the motor cortex, which is why they believe he has had some gross and fine motor control issues. I used to think his balance, or lack of, was an attribute of the inner ear/vestibular mechanism, but that is unlikely the case given the results of his CT scans.

Ethan's hearing age is 11 months, meaning that is how long he has had the ability to hear. I've never spent much time with a hearing child that is 11 months old, but something tells me that Ethan is not that different vocally. So what's the big deal?

Whatever the case, we can and will jump that hurdle. Maybe we're even jumping it right now with all this therapy.

It's a good thing Rich and I have long legs.

-----------Update 8-22-07------------

I forgot to mention something about the report that those familiar with Ci rehab will find interesting. The report actually encourages us to continue using/teaching sign with Ethan. I found that vindicating on the one hand since it's very important to me that Ethan learn how to sign. On another level, how many Ci therapists are out there urging the use of sign?? Yeah, sort of rare.

Friday, August 17, 2007

Birthday Boy

The first year of your life was pretty tough on all of us. Your dad and I worried so much and spent many days wishing you were a little bit older. But your second year brought relief from our anxiety (and your pain) and one wonderful surprise after another.

The past 12 months have probably been pretty stunning to you as well. First you had cochlear implant surgery, then you started to recognize sounds, and in no time you knew the sounds of our voices calling your name, saying we loved you, and telling you to stop pulling the cat’s tail.

That’s not all! After a year of discomfort and insomnia, we finally managed to get your acid reflux under control to a point where you mostly felt comfortable, like a little guy your size should. I still watch (with a hawk’s eye) every food item that comes your way, but I know the days of screaming jags and apnea are behind us.

You’ve also learned to walk and use sign language. The fact that we can’t recognize half of your signs does not deter your busy hands. Nothing is as charming as you signing the word “tree!” And the walking has certainly been a high point for all who know and love you. Walking has made you so happy and proud, and your enthusiasm has been contagious.

And to top it all off, we’ve had a banner year in terms of expanding our community, both in our daily lives and via your blog. The unwavering love and support we’ve felt from family and friends has made this year (and years past) feel like such a blessed one.

We love you sweet boy. Happy Birthday.

Momma & Daddy

Thursday, August 09, 2007

We're going for it.


We spent a few hours at the hospital yesterday going through the evaluation process for a sequential bilateral implant for Ethan. We were told that he is definitely a good candidate for another implant and that the next step would be to approach the insurance company, then set a date for surgery.

In each appointment we were asked to clarify our expectations for a second implant. I guess they want to make sure that families are being realistic and not expecting too much. We gave the standard response and by the end of the day it felt very rehearsed. Studies have shown that a second implant would enable Ethan to identify the locations of sounds (localization) as well as improve his ability to hear in noisy situations. Rich and I feel these benefits will come into play in a myriad of ways, especially in terms of safety and the education process.

The other angle is that if he experiences any additional intermittent electrode failure on the right side, he will have his left side to use for hearing.

So the journey continues.

*I plan to post more pics of Eboy soon, he's so hard to photograph now that he is walking!*

Sunday, August 05, 2007

The Consciousness of Blogging


There are so many great writers in the blogosphere who have the ability to make me think, laugh, weep, and be grateful for their willingness to put it ‘out there’. Many of them don’t know me, which is one of a thousand fine points that make this concept of blogging so cool and unique. I am sure that they would love to see a comment from me because anyone who has a blog enjoys comments. But sometimes I hide under my shell. (I don’t like the term ‘lurk’) In recent weeks I find myself joining the conversation more and more, and it’s not as awkward as I had imagined. In fact, it feels really good to make the connection with the writers whose words have brought me so much laughter, insight and inspiration. I really should put together a list of the blogs I visit, not necessarily to follow the “rules” of blogging, but to give you a sampling of some of these terrific bloggers.

I read blogs and use other online communities (like Ci Circle, Listen-Up, Apraxiakids, etc.) as a parenting tool but also as a way to feed my brain something creative and exceptionally personal. I love the various communities I’ve found, particularly for their warmth and support, but also their wealth of experience and knowledge. They have helped me get through some tough stuff and have educated me in ways that I never expected.

The more blogs and comment threads I read, the more fascinated I become with the politics of it all. I guess anywhere you have humans interacting you will have expectations and some sort of political framework upon which these interations are based. Whether it’s collectively understood or overtly ignored is what makes it so interesting to me. Maybe politics isn’t the right term; it’s more like social networking mechanics and/or dynamics. For instance, one of the reasons I’m not much of a commentor on other blogs is due to the fact that I don’t want anyone to think that I expect them to start reading and commenting me in return. Chances are good that I would really like that, but it’s never an expectation of mine. What a mind game, huh?

Why should I (or anyone!) hesitate to stretch out in the blogging community? Why haven’t I left many comments for my favorite writers? After all, comments are the currency that sets a blog apart from any other printed word. Blogs enable everyone writing and reading them to join a discussion and possibly even form relationships. How cool is that?

As for Ethan’s World, I think that realistically a blog about my son and his life isn’t material that is particularly compelling to many people. I do have reader loyalty, such as family members, friends, and parents of children with similar backgrounds. I write for whoever is willing to read, but I find myself really craving the communal aspect of it all. Is this the lonely stay at home mother coming to the surface? I’m not sure how to bring ‘lurkers’ out from under their shells, but I hope in the future to get to know some of you who haven’t yet said ‘hello’.

Note: If this were my husband’s blog, there would be all sorts of incentives such as free boat rides, angel sightings, door prizes, and a whole slew of other whacky prizes. But I don’t make promises unless I’m sure I can deliver, and the boat rides would be really hard to pull off at this point.