Wednesday, May 30, 2007

He likes the water :-)


Ethan sure had a great time at Grandma and Grandpa Snedeker's!

Monday, May 21, 2007

Calm in the Storm

I was recently talking to a good friend about Ethan and the struggles he has been facing. We had just dropped E-boy off at Grandma and Grandpa's house for the day so that we could head to the city and do some shopping. The conversation then turned to how lucky Rich and I are to have each been raised by such wonderful parents, and then to top it off we both got great in-laws. I mean what are the odds of that happening nowadays?

What struck me most about that moment was the realization that without these 4 people, how would we have made it through the emotional roller coaster that has been our lives for the last 2 years? As my friend pointed out, it's not only the support that we receive daily from our parents, but it's the fact that they have been there supporting us for our entire lives that makes us who we are today, strong and able to face adversity with courage.

I've received so much support by way of compliments from many people since Ethan was born. I have heard that I'm a strong woman, that I have been calm and deliberate in dealing with meeting Ethan's needs. These kind words have really made me feel good and helped keep me going on the days that I feel worn down or depressed.

But what really needs to be understood is that those compliments are indirectly meant for my parents. I was raised in an environment that was the perfect combination of discipline mixed with independence and unconditional love. Rich had the same experience of growing up in a loving, close-knit family and that background has been his rock as well.

Everyone gets knocked down in life. It's how quickly and easily you get back up that makes all the difference.

So to Chuck & Sarah and Gene & Jeanie, Rich and I thank you deeply from the bottom of our hearts.

Sunday, May 20, 2007

Recent Conversation with Hubbie

This sort of illustrates how desperate we are to get Ethan not only to go sleep, but to stay asleep for more than one hour at a time.

Me: So did you get E-boy to sleep?
Rich: Yep.
Me: Wow, how'd ya do it?
Rich: I nursed him down.
Me: Say what?
Rich: He found a spot on my back he liked.
Me: Whoa...dude.

Thursday, May 17, 2007

The One and Only

Ethan and I recently were invited to be guests in an ASL class at Ohio University. The students have studied deaf culture and have touched briefly on the cochlear implant and its significance to the deaf community. They were very interested in Ethan's implant as well as his sign language abilities. They asked informed questions and showed a genuine interest in my experience as a hearing parent to a deaf child. I explained that I feel we've approached his deafness from both a medical point of view (hence the implant) as well as a cultural point of view. We're very interested in and respectful of deaf culture, especially the potentially transformative affects of cochlear implants on that community.

What I wasn't expecting to face in that class was the question of whether or not I would be interested in having more children. I believed the context of the question was based on the fact that Ethan was born deaf. I found it very hard to formulate an articulate answer, one that aptly expressed my feelings without making it seem as if having a deaf child was the end all of parenting. Inside, I'm thinking HELL NO, but in reality my reasons for wanting to stop after Ethan has nothing to do with his deafness. I think having another deaf child would seem much less daunting and maybe even exciting. That's the darned truth.

Ethan's deafness aside, he is a very high maintenance kid with many issues that involve a lot of patience, time, investigation, and above all, a willingness to accept that he will defy nature at every turn. For instance, he doesn't really need sleep - or food actually. At least that is what he thinks.

He needs all that we've got to muster. He is surrounded by people who adore him and work hard to meet his needs, but only because he has parents who can put all they've got into his care. Dividing our attention would be next to impossible. Maybe I'm just really in touch with my own limitations. I am in awe of people who can do it, whether their children are "special needs" or not. And single parents? They should be basking in the glory that is only afforded to our super-star athletes.

One of my favorite writers in the blogosphere is Rob, father to Schuyler. He writes very eloquently about this topic and many others, I highly recommend checking him out. This particular entry I'm referring to is titled Secrets and can be found at his blog, My Beloved Monster and Me. Another entry of Rob's that is beautiful and touches more on the experience of raising a "broken" child is titled Shepherd's of the Broken and is well worth the read.

Wednesday, May 16, 2007

Random Intermittence

Ethan is certainly healthy and happy! That's the most important thing. Random intermittence of electrodes is another.

We're home from our visit in Cincinnati. Once again, we were reminded of how lucky we are to live only 3 hours away. One of the nurses asked where we were from and replied "Oh, you guys are close", to which I replied "No, we're 3 hours away"! She is used to meeting people from all over the U.S. and the world for that matter. Children's in Cincinnati is rated in the top 5 pediatric hospitals in the country. Another reason to feel lucky- I'll take it!

Ethan was sedated for his CT scan. He has undergone anesthesia 3 times but this was the first time I watched. I had no idea how hard that was going to be, silly me thought it'd be no big deal. Wrong! It made me teary-eyed and frightened. Note to self: never watch that process again.

His scan looked normal. The implant is exactly where it should be and there are no tissue changes around the implant. That's great news! I was totally relieved. My paranoia took over during the scan and I began to wonder if the reason things aren't firing correctly is because there is something new and unusual in the region of the implant. Thank goodness that's not the case.

The audiologist determined that some of the electrodes that had dropped earlier were back in action and one new electrode was now shorting out. The intermittent nature of the problem has everyone confused. The surgeon said that with this implant it is happening in less than 1% of the cases. Ethan has been a statistic since the moment he took his first breath, so we're not really surprised to hear that news.

We don't have many options. The most important thing is that he is comfortable and able to hear and until either of those goals is not met we will just wait and see. If he were to be re-implanted, then he would go without sound for about 3 weeks. Not ideal, but luckily he has and enjoys sign language, so we'd hopefully not see him feeling too much frustration.

We're still tabling the bilateral until we all feel more comfortable about Ethan's balance and motor coordination. Basically, another implant could either really help or really diminish his balance, which is extremely tentative anyway. It's a scary risk to take, so for now we'll just say no thanks. Ideally he will gain better motor control this year and then we'll all feel better about making that decision down the road.

There is more to say, but for now I'm going to leave it at that and go have a snack with E-boy.

Friday, May 11, 2007

Snoozin' Big Bed Style


His nap yesterday was exactly 3 hours long, a personal record! I wonder if the big bed has anything to do with it? I didn't really know what to do with myself, what a problem to have!

Raisins!

Ethan loves raisins! We're so happy to see him branch out and try new foods!

He likes the little box and even signs for more when he's polished them off.

Also, big news in language land...

Ethan is attemtping to say "Hi"! It usually sounds like "ha" with a short a, but this week in therapy he used the long i sound. I kind of like his little hillbilly hi though!

We go to Cincy next week for the Cat scan and a meeting with the surgeon. Will post more news at it becomes available!

Saturday, May 05, 2007

Implant update

For those interested in the saga of Ethan's implant, here is the deal. We saw a rep from Cochlear Corp as well as the audiologist last week. The impedance test that had shown a few electrodes shorting out actually showed them working normally this time.

However...

The Cochlear rep was very nice and sympathetic. She ran some tests that she explained to us rather well considering we were in electrical engineering territory. The chip just under his skin that functions as the transmitter and computer is working fine. Then we looked at a graph which shows levels of current running through each of the 22 electrodes. There were 6 that she decided were not running nearly enough current so those 6 were turned off.

We go back May 15 for a CT scan to get a better look. One week later (argh!) we see the surgeon to discuss everything. Ethan will be sedated for the CT. I hope we can get pictures of both sides of his head so the surgeon can see his other cochlea for a possible future bilateral implant.

For now, he is still taking off the magnet many times a day, but his balance seems fine and he's not throwing up on a regular basis. He has been vomiting though and I'm pretty sure it's his reflux. That's new territory for us as he has always been a "silent refluxer". It's teething time again and that always makes the reflux flare up.

I really don't want to make these trips to the hospital. We'll do what we have to do though.

Goodbye Crib, Hello Big Boy Bed

Cribs, nothing but a health hazard around here.



"I have to get out of here now!"


"Maybe I could do a back dive over the railing to get out"


"Look at me Mom!"


"Maybe my gymnastics moves will do the trick"


"Ah, now we're talking"

Gardening


Yesterday was a busy day around here. Misha came over and kicked things into high gear, lots of progress was made in the yard. In this picture, Ethan is pointing to his head to indicate that he hears Misha, she's just to the left and is making noise with a gardening tool.


The fact that he wasn't getting anywhere didn't stop Ethan from trying!


Whoa! That's a gardening tool, not a knife!


Zola supervised from a nearby tree.


This sort of sums up how we all felt at the end of the day.