Sunday, December 30, 2007

Calling all Ci Users!

I need some input from those of you who have a cochlear implant. Ethan is still having trouble putting on the second implant which was activated on November 20.

Over a month into the journey, he still hates to have the implant put on. I started turning the volume level down to 1 so that it wouldn't be so jarring (the only word that I can use to describe what I'm guessing he feels), and that seemed to help tremendously for a few days. I'd very quickly turn it up to 8 or 9 before putting the battery pack in his shirt and that was fine with him.

Now he is even starting to cry when I put it on with the low volume settings. Granted, he gets over it pretty quickly (but NOT easily, it takes distraction and work on our part), and we're fairly sure that he is reacting due to something other than actual pain. His pain threshold is extremely high and we usually know when he really hurts.

Could it just be that the sound quality is so foreign and strange compared to his other implanted side that it has him freaked out? For what it's worth, his first implant goes on with the volume set at 12 with no problems.

What is it like in the moment that the headpiece is attached to your head?

We see an audiologist on Jan. 9, though not the one that typically works with Ethan as she is on maternity leave. I really hope we get some clarity on this soon.

Friday, December 28, 2007

Christmas in Virgina!

Ethan loves his rocking zebra at gram and gramp's house.

This photo was taken within the first 10 minutes at my parents home in southern Virginia. We spent nearly 5 hours driving and Ethan couldn't have been better behaved, or happier to arrive anywhere. He headed straight for the room with the toys and doled out kisses for his grandmother upon each and every request.

Our boy wowed his grandparents (and great grandpa) with his love of learning and practicing the alphabet. He spends more time studying his ASL flashcards and place mat than playing with toys. He loves the signing time ABC's dvd and is able to sign most of the letters in the alphabet. He also plays with letters in the bathtub and will sign each letter as we hand them to him. It's so motivating for him that it has actually spurred long awaited language development. He attempts to say most of the letters and is starting to really hit a few on the mark.

I'm actually looking forward to our next speech therapy visit on the 7th to show his therapist his new bag of tricks. We've enjoyed a much needed therapy break since Ethan's ear tube procedure on the 18th. The procedure took all of 10 minutes and was successful, but his recovery was the roughest we've seen of the the 5 times he's come out of anesthesia. It takes a heavy toll on their bodies to be put under for such a short period of time, only to be yanked back to reality moments later.

The nurses always comment on his curly hair and this time was no exception. One nurse said "Why do all the boys get the curls and long eye lashes?" My reply was simply "Because girls get all the good clothes!"

Then Ethan got this sweater for Christmas. I may have to reconsider the girls vs. boys clothing issue because this is pretty sweet. And the curly haired boy isn't bad either.

Sunday, December 16, 2007

Baby Ethan

I was just perusing the archives of photos on my laptop and came across this one where Ethan is being tickled by "Uncle Rat". Look at that glee! Rat has always been a pro at bringing out the best grins and giggles in our little guy.

We have a very busy week ahead with therapies and the ear tube surgery. We get to finish it off by heading south to see Grandpa and Grandma (my parents) who will no doubt be totally charmed and amazed by their boy.

Happy Holidays to all!

Thursday, December 13, 2007

Two New Things!

E-boy is on a roll!

Last night at dinner time, Ethan looked at us and signed "Eat lunch" - granted he had the wrong time of day, but putting 2 signs together is big stuff! The only other time we've seen him do this was about a year ago and it was pretty hilarious. Rich was shirtless and picked him up. Ethan pointed to his nipple and signed "Dad Milk", a moment I'll never forget!

This morning I picked Ethan up and carried him into the bathroom for some mirror play. He spontaneously leaned in and kissed me on the cheek! He has never done that without being prodded, and even then he will often hold back the lovin'. (He actually did it twice in a row!)

*New surgery date is Tuesday the 18th!*

Tuesday, December 11, 2007

Quick update and some Ci cuties

We had to cancel Ethan's surgery today because Rich and I are both too ill to take him to the hospital. Hopefully we can get it rescheduled soon as I was really looking forward to getting it done. I want Ethan to feel some relief, he's carrying around a lot of fluid and that can't be a great feeling. The little guy has been on an antibiotic since Oct. 30 (to prevent an infection) - and I think it's wreaking havoc on his system. Incidentally, I've held off on having those labs done since the meds can affect the test results.

On a happier note, take a peek at Buzz's site for a dose of serious cuteness. All of our Ci friends are absolutely adorable, but this picture just really cracks me up.

(Their caps are by Hannah Anderson, many parents of deaf/hoh kiddos love them for keepting the head gear in place. These have been embellished by their football fan moms and dads!)

Thursday, December 06, 2007

Time for tubes.

(The final picture of a small series of Ethan and his beloved Misha)

I know I’ve said it before, but we live in a pretty rural region that is very geographically isolated from the rest of the state and could be characterized as a place where natural beauty and generational poverty live in harmony. We are home to a small university, which is the main source of employment for the community and one of the reasons why such a variety of folks find themselves settling down in such a strange little remote area. It’s a very liberal town, we’re the only county in our entire state that voted in favor of gay marriage; a fact that makes me proud to call Athens home.

I love that living here allows me to bump into friends and acquaintances whenever I’m out and about running errands. This evening I saw a local audiologist at the grocery store and shared the news of Ethan’s progress with his cochlear implants. She is the one who had to deliver some difficult news to two brand new parents; she told us that Ethan was profoundly deaf. I feel a bond with her that is hard to describe, but I bet you can imagine if you think back to a time when you received emotional news. I'll always remember that day, what the weather was like, what I was wearing, even the position I sat in, and how I looked at the world a little differently from that moment forward. All I can say is that she was the perfect person for us at that time and place in our lives. I will always be grateful that it was Roxanne sitting in that warm dark room with us.

But living in a small town has many drawbacks, not the least of which is a very limited menu of educational options for a special needs child. And Ethan has pretty specialized needs. I worry.

We found out today that we will no longer benefit from the financial support that our state has been providing for Ethan’s needs since infancy. They have paid for many (but not all) of the bills that our insurance has denied these past 2 years. I have no idea what that sum is at this point, but I know that is has helped afford me the opportunity to stay home with Ethan and be the person that participates in his many appointments. I am trying to suppress my anxiety over this news and trust that everything will work out, but it’s pretty terrifying if I’m going to be completely honest.

Next week Ethan will go back to Children’s to have tubes placed in his little ears. He has had chronic fluid and has had to stay on antibiotics to prevent infection, so the time has come to take care of the problem. It’s no big deal, a common procedure, but a hassle nonetheless. I made sure today that our insurance would foot that bill and it will.

I need some help getting into the Christmas spirit; can you point me in the right direction? (I’m seriously considering baking gingerbread men tomorrow, maybe that will do it!)