Success!

Ethan now has 2 cochlear implants, the surgery was very successful! Here he is this morning, in the hopspital waiting to be discharged. They kept him overnight to keep him hydrated and to keep the pain under control. He came out of surgery at 3:30 p.m. and slept until 4 a.m., waking only a few brief times to sip some juice. What a champ we've got!

We'll be leaving here for home shortly, just wanted to update everyone and thank you all for thinking of us.

Ethan's Eyes

Ethan’s World has a spiffy new look. My sweetie, also a graphic artist, put it together for me. My sweetie who works tirelessly at owning a small business and teaching part-time to provide for his family. My sweetie who worries about paying the bills, his son’s health, and his wife’s mental stability! My sweetie who is the best dad Ethan could ask for. Seriously, Ethan and I both hit the jackpot.

I took Ethan to see his local optometrist this week. She didn’t need to see him, but I felt the need to see her. I really trust this doctor and think she’s one of the best people on his team. She is the one who made the call to facilitate getting Ethan evaluated by an OT. She pointed me to the book which many refer to as the sensory integration bible. She noticed first (before the ophthalmologist) that he needed to be wearing glasses. She has had a huge impact on his life and the most amazing part about it is that we can drive 10 minutes to see her, not 2 or 3 hours.

Since Ethan has an ophthalmology visit the day before his surgery next week, I thought it would be best to get her opinion on the topic of surgery. The optho’s seem to be very pro-surgery and that makes sense because they are trained surgeons. She however is a developmental optometrist and has been cautious of the surgical path all along and has wanted to test all the options, using surgery as the final option. She is now endorsing surgery. Meeting and discussing a surgical procedure, less than 24 hours before another surgical procedure (albeit of much greater magnitude) isn’t ideal, but if it’s best for Ethan then it’s a no-brainer.

I imagine that my next post will be after his Ci surgery, which is scheduled for 11 a.m. on the 30th. I hope I have nothing but good news to report.

Confused

My friend Misha invited me to attend a guest lecture in her graduate level neuroscience class last week. The presentation was titled "Study of Deaf Ci Users by using PET." I really enjoyed the chance to make myself presentable (I ditched my mom outfit) and be in a totally different environment. It didn’t take long to figure out that I would walk away understanding about 3 of the concepts in the presentation, but that didn’t keep me from listening intently and taking some notes here and there. Looking at slides of the brain and hearing about changes in glucose metabolism in the left middle occipito-temporal junction is a little too "cerebral" for me at this point.

Here are the 3 things that stuck with me:

1. From a neuroscience perspective, Ci users are a great modality to study sensory deprivation AND recovery. (True, makes sense to me anyway)

2. After Ci surgery, there is major enhancement of nonverbal cognitive functions and working memory as well as an increase in visual spatial processing. (Um, WOW!)

3. In terms of cross modal plasticity, sign language can activate the auditory association cortex. (Okay, very cool, but brings up some serious questions)

I put Misha on task to talk to her professor about that last point. There was no need as she and I have the same question: does sign language help or hinder the development of spoken language in deaf children? Can that question even be addressed by current research?

This is a biggie for those of us who parent or work with Ci children. The dominant and prevailing theory is that of the Auditory Verbal method of speech therapy. This type of therapy is extremely successful with Ci kids and I love most of their methods and ideas. However, AV therapy strongly discourages the use of sign. They believe that using sign is counterproductive because the point is to put all the focus on audition and developing the auditory center of the brain. And while I haven’t read the research they cite (don’t need to really), Rich and I have decided that doesn’t make sense for Ethan or our family. So we practice many of the AV ideas in our therapy and in our home, but we also continue to use sign.

Proponents of using sign with deaf babies say they have their own research to cite, proving that signing actually helps with language development. I have not read their research either. Again, don’t have to. (But would like to someday)

I feel that I have to let go of everything I hear/read from the science, medical, and speech and language community, and just make the decision that I know in my gut is right for my son and his circumstances. That’s what parenting any kid, hearing or not, is all about.

Now if you’ll excuse me, I’ve got a bowl of rice pudding waiting…

Pre-surgery thoughts

That tacky little ticker up there says we have surgery in 2 weeks.

Gratitude with a pinch of anxiety is what I’m feeling these days. I’m still in awe of the fact that our insurance is going to cover Ethan’s surgery. Rich and I were preparing to do battle and were caught completely off guard with the news. They won’t cover any visits (ENT, audiology) that have to do with Ethan’s deafness because it’s a pre-existing condition. (This could be fodder for a weeks worth of posts) But they cover the surgery because the implant is viewed as a prosthetic device.

I think I’m distracting myself from Ethan’s impending surgery by focusing on his other issues. I’ve been delving deeply into the sensory stuff and apraxia-land. And he doesn’t even have an official apraxia diagnosis! But buddy when that comes down the pike (and my gut knows it will), I’ll be on the ready with my recipes for a gluten-free and casein free diet, as well as all the supplements I’ve been researching. I’ve got books on their way here right now! And don’t even ask me how many hours I’ve spent reading messages on my mailing lists, devouring every morsel of experience and advice I can find. It’s ridiculous!

The actual surgery is one thing. Granted, it’s a pretty big thing, but it’s actually only the beginning. I’m a bit worried, as any normal parent would be, but not overly freaked out by any means. Having been through it once before does make it easier. I know he’ll be fine.

There will be loads of follow-up appointments, probably more this time around than after his first implant. We’ve been told that our implant center likes to do more follow-ups with bilaterals since there isn’t much formal research out there on children yet.

There will also be several mapping sessions with the audiologist. During the first year of having a Ci the sessions are very frequent, every 2-4 weeks for a while, then 6 or 7 months later it backs down to every 2 or 3 months.

These appointments are a 3-hour drive (in each direction) for us. We usually stay with my dear friend Audrey and her husband Mike (and their new cutie Blake), but we will still be doing a lot of back and forth.

It’s a lot to add to an already busy therapy schedule. I drive Ethan 1.5 hours each way to his weekly speech therapy and 1 hour each way to his PT/OT sessions – which are every other week now. He also has 2 aural rehab sessions per week here in Athens.

It’s all just a little bit overwhelming.

I’m reminded of the days following Ethan’s first Ci activation, nearly one year ago. I was filled with anxiety about maintaining the equipment and keeping it all on Ethan’s head. Everything was fine though and looking back I realize that I got pretty worked up for no reason.

The same thing happened when he got glasses last year. When his doctor told me we needed to go into the next room and look at frames I nearly fell to the floor in the fetal position. I couldn’t imagine putting any more gear on E-boy’s head and I worried that it would be next to impossible to keep it all intact and in place. Well that turned out to be not such a big deal either.

So to this new dread and anxiety I feel creeping in I say, “Beat it! I’ve got better things to do.”

Friday Night Lights

Ethan and I had the pleasure of attending the fair with grandma and grandpa last night! I anticipated this trip all week, imagining the barbecued pork, the steak on a stick, corn dogs, and the obligatory sugar waffles and funnel cakes. This year I indulged in deep fried veggies (Fresh!) between the sweet and savory snacks. Grandma and grandpa pushed the stroller so my hands could be free to eat like the wild pig I morph into at these events.


Ethan saw (and signed) a cow, pigs, horses, chicken, sheep, and rabbits! He really enjoyed watching the lights and spinning rides and looked pretty overwhelmed by the time we left, covering his face with this hands and rubbing his eyes. It's a lot to take in for a little guy. Next year he should be big enough to enjoy a ride or two, or even eat his first bite of fair food.

Repose

This is the view from where I sat last weekend. I'm looking at a cow that appears to be hiding behind the trees. I'm hearing a mixture of fish flopping, heron's hooting, and water splashing as I dig in with my oars. Nice sounds. I'm happy to be spending this peaceful time with my cousin Sonja, being reminded of childhood memories, hoping that our grandmother is smiling on our reunion.

Monkeys and Interviews

Ethan has a new backpack that he and I both love. He loves the monkey face and I love the monkey tail because I carry it like a leash and he can't get away from me! It's an Eddie Bauer product we found at Target. Thanks for the suggestion Aunt Audrey!

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I participated in an interview meme, thanks Kyla for the questions! If anyone would like me to interview them, just leave a comment and I'd be happy to nail you with some questions!

Are you a night owl or early bird?
I’ve always been a night owl, even after several years of teaching and getting up at 5:30 a.m.; I continued to be happy late into the night. Ethan is threatening to change that.

What is your favorite time of day with Ethan? Why?
Mornings because they are the only time of day Ethan will cuddle, or stop moving for that matter! He is generally in a better mood in the mornings as well, so that makes it an obvious choice since his mood sort of sets the tone around here.

If you could vacation in someone else's life (famous or not, living or not) who would you choose and why?
I was truly stumped on this question for a day or two. I couldn’t get my mind off of George Bush. If I could vacation in his life for a day, maybe I could do something in that 24 hours that made a difference. He is, after all, the most powerful guy around. I imagined myself repealing a veto or two, such as the stem cell research bill or the bill he vetoed last week that would have provided health insurance to a few million children whose families cannot afford private insurance but who make too much money to qualify for Medicaid. After all, that could easily have been Ethan, and it still might be someday.

But instead, I am going to say that I’d love to spend a day being Ethan. (Thanks for the help here, Kyla!) I’d love to know what it’s like to be deaf. I’d love to know what the world sounds like through a cochlear implant, or how having vestibular issues dramatically affects the way your body moves. I’d like to know what he’s thinking when table food is presented, or when it’s bedtime and his body can’t seem to unwind. What does he think of all the therapy he has? How is the acid reflux doing these days? When does it hurt the most?

It would be an illuminating experience, to say the least.

How did you meet your husband?
A mutual friend introduced us in 1995. I was in a relationship (that was on its last leg) at the time, so the sparks didn’t necessarily fly immediately. Once the ball got rolling it was a whirlwind of sorts that I think took us both by surprise.

What advice would you give to a parent who had recently received a diagnosis similar to Ethan's?
First and foremost, I would remind them that regardless of the diagnosis, their child would grow up and be a happy person with a high quality life. Someone told me early on that Ethan would have many accomplishments and do whatever he set his mind to doing. They were right. There is no need to lower your expectations; you just have to forge a different path to reach them.
I would also encourage them to find other parents that have walked a similar path. One of the hardest aspects of parenting a child with difficulties is the feeling of isolation; it’s so helpful to share your fears and concerns with people who have walked that path. Support from family and friends is enormously helpful, so don’t be afraid to bend an ear or ask for help when you need it. I’ve found that most people want to help, but they don’t know what to say or do; you’ve got to let them know what you need when you need it.

Wordless (almost) Wednesday

This is e-boy with his grandpa. He and I are leaving today for a few days, we're going down south to visit my parents. Have a great week and weekend everyone!

Back to the begining...

A deaf blogger that I have recently found is gathering information to write a piece on the newborn hearing screening process. She is specifically interested in examining the options presented to hearing parents of deaf infants, and whether or not ASL is given equal footing with the cochlear implant while discussing communication options.

From what I’ve been told, the hospital where Ethan was born was one of the last in the state to do the newborn hearing-screening test. And I’ve also heard that Ethan was the first baby to be identified with a hearing loss.

Ethan failed the newborn hearing screening on our 2nd day in the hospital. The test was repeated 1 or 2 days later and the equipment failed to work, so we were sent home and told to schedule an appointment for follow up. The nurses told us that it wasn’t uncommon for C-section babies to fail this test, so we didn’t really give it much thought. Two months later, we got a phone call asking us to bring him in for the follow up test.

They did an ABR, which is basically the most empirical form of testing hearing because electrodes are used to show the brain’s response to a wide range of tones and decibel levels.

The audiologist printed the results of the test, but didn’t interpret them for us. Instead we were asked to see his pediatrician or an ENT to test for fluid in the ear canal because she wanted to rule that out since the test looked, I don’t know what she said exactly, less than perfect? The point is, we left with the report in our hands, but being unable to read an audiogram, and having an audiologist choose not to tell us, we were sent on our way having no idea that Ethan was deaf.

We found our way to a different audiologist (in a small local clinic where it was determined that his ears were clear) who looked at the ABR results and told us the news. She handled the situation so tenderly and with great skill and compassion, and then told us that for her it was a first in her career. In 30 years, she had never had to tell a couple that their child was profoundly deaf. My guess is that the first audiologist was also new to the world of delivering hard news.

We were told about ASL and it was presented in a very positive manner. I vaguely remember (because I was shocked and distracted) a story about a young man from our community that grew up here using ASL, even though we have no deaf community to speak of. She also directed us to what she felt was the best location in the state for children’s audiology and explained that they would fit him for hearing aids and could talk to us about the possibility of a cochlear implant.

Once we hit the big city hospital and the medical world, more tests revealed the cause of Ethan’s hearing loss as congenital cytomegalovirus. This was quite a blow as many cmv children go on to experience a wide range of cognitive and developmental disabilities. Blindness and deafness aren’t uncommon, cerebral palsy, mental retardation, and the list continues.

In summary, ASL was presented in a very positive light, but not quite given the same emphasis that digital hearing aids or a cochlear implant received. Had we lived in a city with a flourishing deaf community, might there have been a different emphasis? I’ll be interested to see what Jamie finds, particularly with place and accessibility to the deaf culture as factors.

The rest of Ethan’s story is to be continued…