Sunday, April 29, 2007

Happiness

There's nothing like a blue sky, warm sun, and 67 Chevy Impala rag top to take your mind off your troubles.

Friday, April 27, 2007

lame.

Ethan is constantly pulling off his processor. He has never done this before, it looks like he is really uncomfortable. He threw up twice last night and once today. He isn't himself, yet he has no outward signs of being sick, no fever, still plays with his toys and chases the cats. I can't help but wonder if the two things are connected. If I heard static and constant buzzing in my head I'd be tossing my cookies too. Of course, we don't really know if that is what he is hearing, since he can't tell us. But the constant removal of the device surely sends a clear message.

Wednesday, April 25, 2007

Noteworthy

This morning I had 2 messages in my inbox from parents experiencing a similar electrode problem with the same implant that Ethan has. One parent is in London and described a depressing trip to the audiologist that read almost word for word like our trip last week. Another came from a parent in Miami whose daughter lost 4 electrodes, then it became 11. She sounds very frustrated as they were told a re-implantation would be necessary, then they changed their minds and told the family that they'd just work around it.

I feel terrible for these families and what they're going through, but it feels good to know we're not alone. On the other hand, the more we learn about the shared experiences of others, the less faith I have in the implant. If they tell us they want to re-implant, I'd like to be able to have faith in the new device they are putting into his head. If there are lingering doubts about whether or not a new device will work, it makes putting Ethan through another surgery seem like a bad idea.

If Ethan had bilateral implants (like the two kids in the stories above), then going through several weeks of no hearing in the re-implanted ear would seem a lot less dramatic.

Tuesday, April 24, 2007

Don't know.

There have been some inquiries about Ethan's implant, so I'll try to address them here.

The short and tall of it is, we don't know. I guess no one knows. I can tell you that our audiologist is brilliant at what she does, and she has never seen this before with his particular brand and model of implant.

I'm tapped into a group online of over 1,240 parents of children with implants, and when I ask them anything at all I get great responses from lots of people. When I asked about this issue, I didn't get one single response. So I decided to ask again thinking that maybe they didn't receive my email. Still no response.

The good news is that we will be in Cincy on April 30th and a representative from Cochlear Corp. will be there to do an "integrity test" on Ethan's implant.

So...we'll keep you posted, but for now it's just a guessing game. I do know that Ethan has been taking his processor off many times today, which is incredibly unusual behavior for him. He is leaving his hearing aid alone as well as his glasses, it's just the processor that he wants to remove. I've read accounts of people who have experienced "soft failures" with their implants and they all describe static and annoying chirping sounds. Hopefully he's not going through that right now. It might explain why he has been incredibly grumpy for the past 2 days.

I'm fighting the grumpiness too, so I can't blame him. It's time to just focus on the blessings and not get hung up on what may or may not be wrong.

Wednesday, April 18, 2007

Momentary setback, we hope.

Today Lisa (our audiologist) performed a routine test of Ethan's implant to make sure that all the 22 electrodes are working and making contact with the auditory nerve.

To her surprise, 3 electrodes had totally shorted out and 2 others were well on their way. She ended up turning off all 5 of them. This is very unusual, in fact they've never seen it with this particular device. His is called the "freedom" and has a reputation for reliability.

The good news is that he is still hearing really well on all frequencies. The bad news is that we don't know why this is happening or what will happen next. Is this a sign of a device failure? If so, then Ethan will go back into surgery and they'll remove the device and put a new one in its place. At this point, the problem isn't severe enough to warrant that, but if the problem gets worse we will have to consider re-implanting.

Not easy news for us to hear. And yet not the worst news we've ever had regarding Ethan.

We were all set to drive home from the hospital, but Ethan and I both needed to do something other than sit in the car for 3 hours. We went to Mike and Audrey's, where we always stay when we're in town. They take great care of us and have seen us through some tough stuff. I finished the night with a piece of banana creme pie, my favorite! Ethan finished the night with a really fun bath supervised by Porter, his favorite dog.


Tuesday, April 17, 2007

The New Blue

Click the picture to see full size

Here is a pic of E-boy in his groovy blue hearing aid. The ear mold is blue with green swirls! We are going to Cincinnati Children's tomorrow to see his audiologist.

Ethan wants to say "Shout out to Lisa, You are the BEST!"

We have a mapping session where we get new programs for Ethan's processor, plus we'll see how he hears (or not) with the hearing aid in the unimplanted ear.

Stay tuned....

Monday, April 16, 2007

Progress Abounds!


I can't believe how well things are going in Ethan's world, I almost want to pinch myself to see if it's really happening. I mean, he is taking 2 hour naps! He is sleeping better at night! He is starting to walk with just one hand being held! He is starting to try new foods! He is saying the word "hot", his version is "hah!". He's making new vocalizations that we've never heard! He is signing more!

I don't think it's a mere coincidence that this is all happening the 3rd week into his new therapy. His occupational therapist is nothing short of outstanding. She knows her stuff and tirelessly makes Ethan good healthy foods to try. The brushing therapy has been known to help kiddos sleep better, and his improved sleeping comes on the heels of my committment to brush him on the recommended schedule, which is every 90-120 minutes. (I'll brush him every 10 minutes to keep up this sleeping thing!)

Can't wait to share more good news with everyone.

Friday, April 13, 2007

Organ and Tissue Donation



I wanted to take an opportunity to remind everyone how important it is to consider this topic. There is a mother in Illinois who has brought this issue to light for me. Her little girl Annika is 6 years old and has had 2 liver transplants and is currently waiting on a list for a third.

I was surprised to learn that "Each day, about 77 people get the organ transplant that gives them a second chance, but 19 others die waiting for a donated organ."

The message needs to get out! To learn more, visit these sites:

Official U.S. government site on organ donation

Links to information for all U.S. states and territories

Tuesday, April 10, 2007

This is fun!

I think we've got a Natural here, don't you? We *both* love swimming with Misha!


That vocalization or shout at the end was from another child in the pool. Ethan got much rowdier and made all kinds of squeals and shrieks before all was said and done.

More feeding progress

Ethan has finally started feeding himself! He prefers to feed himself fancy blueberry and strawberry yogurt and just flings things like cereal or applesauce. Have a look at his fine hand-eye coordination skills. (Hint: move your mouse off of the picture once the video starts, that will move the play/pause bar from view.)





Did you like that little surprise at the end? Maybe I need to rethink my terminology and use words like "stinker"!

Sunday, April 08, 2007

"Ma" = Progress!


Just when I was starting to let my imagination get the best of me, Ethan decided it was time to drop the "Ma" bomb. Of course I didn't actually witness it, but those who did were pretty excited and described the scenario several times.

It happened during a speech therapy session. I'm almost always at his sessions, watching from the next room so he isn't distracted by my presence. On this particular day I had decided to go down the hall to the gym and walk on the treadmill. The gym I belong to is literally in the same building, a short walk away. Since he's in therapy 3 times a week it seems okay to go get a workout once in awhile. I mean what am I going to miss?

I missed him signing the word mom and saying "Ma" over and over.

Cool!

It's sort of Little House on the Prairie, maybe we should teach him to say Pa as well. Until then, Ma needs to loosen her bonnet strings and relax.

Monday, April 02, 2007

Everyone needs a little inspiration....


Or as is the case with this girl, a LOT of inspiration. This is our friend Zeva on her first day of walking. She is 3 months younger than Ethan and lives a stones throw away. They are great playmates and Ethan has quietly observed and learned from her over recent weeks.

I often find myself trying not to let anxiety creep in when it comes to all things Ethan, and his late walking is certainly no exception. He has been taking baby steps (usually supported) for months and sometimes it feels like he'll never get the balance to go at it alone.

Zeva was also a "late" walker (which these days is over a year old), not as late as E-boy, but she was carefully fine tuning her skills and waiting for the right moment to roll it out. She didn't want to just take off for the sake of taking off. When she started walking, she was good and ready and fast became a pro. I took comfort from watching her make those steps on her own good time. And Ethan is no different.

(yep, those are converse high tops she's wearing)

Last week, Ethan stood up next to Zeva, he just went from sitting to standing like it was no big thing. A week went by and we didn't see him do this again. Then today at Zeva's he was obsessed with standing and actually went from sitting to standing and even taking a few small steps, all unassisted. Zeva was right there in the middle of the action both times. He watches her and feels no pressure, but is reminded that he too can do this crazy vertical movement. Her easy going attitude sets the tone for him. It's got to be easier than the constant drone of my voice saying "Come on Ethan, you can do it!"

I'm hoping that in the months to come, Zeva and Ethan will continue to play well together, as I think she'll be a great language model for him. And she is starting to learn sign, so that too is very exciting stuff.


(What is secretly the *best* part of this whole relationship is the fact that Zeva has really cool parents that I especially enjoy hanging out with. I credit her momma (Adele) to helping me get through the winter doldrums, keeping my head ever so tilted on my shoulders.)