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for future updates on Billy's progress, please visit our new blog Teeny Tiny Pieces.


the sound of silence

Billy's surgery was 12 days ago. He's progressing on schedule, according to his doctor, but they won't know for about a month whether it was successful or not. That's when they do his next hearing test. He can begin to use a hearing aid this weekend, so we'll begin to see if things have improved.

Off and on since the surgery, he's heard things. Himself chewing, the dogs barking, a siren in the distance. But it's been very much off and on and so we're trying not to get too excited, but remain cautiously optimistic.

There's been a lot of note writing and lip reading going on. And also a lot of quiet. Since he can't do much lifting or bending or straining, he's bored to tears and began a "small electronics project" which has become almost a permanent fixture on the kitchen table. That started about 4 days ago and show no sign of winding down anytime soon. But, he's having fun and it's keeping him from watching endless hours of Animal Planet, American Justice and Forensic Files. For that, I am greatly relieved. We're engrossed in the Baseball playoffs, so spend those nights when games are on cussing out the umpires and hooting and hollering. Another great diversion from the waiting game.

The worst part for him is the fact that he can't talk to the kids. Well he can talk to them, and does, but he can't hear what they say back. So, it's an interesting tennis match of conversation, with me reminding them he can't hear them, him saying hello, checking in on the events of the day and saying good night, and me translating what they inevitably say on the other end in response. It's not perfect, but it's keeping them connected. And, of course there's email, which the 13 year old girl is much more inclined to use than the 9 year old boy. We're making due, but I can tell the kids can't wait to have a more normal conversation with him. The oversized chalkboard we all use when we're together is a fun novelty that will quickly wear off, I'm afraid.


t-minus 19 hours

Tomorrow morning Billy has his surgery. He's in a really calm, optimistic place about it. I'm a little freaked out, but trying not to let my overactive imagination go to those places that anticipate the worst. I know he's in the best possible hands, at the best possible facility. The rest is in a higher power's hands.

Our trip to Puerto Rico proved to be absolutely the best pre-op game plan. We spent some wonderful time with his family, who I was meeting for the first time. It's such a big group, with all the drama and hilarity that goes along with that, that we were constantly distracted from our own "stuff". We relaxed and were able to let go of all the stresses we collected over the last several months.

Since returning, I find myself cleaning...trying to ready the house so that Billy will be as comfortable as possible when he gets home. Truth be told, I've always found cleaning therapeutic and so find it a comforting outlet for my accumulated energy. Tomorrow, while he's under the knife, I plan to run several errands, to keep me occupied. Then, when he comes home, the goal will be to keep the house as quiet as possible while he starts to heal. His kids arrive Friday for the long weekend, and keeping them quiet could prove challenging.

Say a little prayer for us tomorrow. I'll be back with an update soon!


semi-full steam ahead...

It's been a while, but Billy and I were anxiously awaiting the results of Mass General's Cochlear Implant Review Board. The news is somewhat disappointing, I'm afraid. They have rejected him for the implant, but offered a recommended alternative. Interesting use of language, since they told us in a followup conversation that their "recommendation" was really his only choice for now.

Rather than proceed full stop with the implant, they suggest doing a stapedectomy (excuse the possible misspelling) first, which entails surgery on the bone inside his ear. Based on their examination of his case history and hearing tests, they feel that there's probably still enough "good material" in his ear, but that the sound just can't get through. By operating, they hope to correct that problem and feel he may do well with that and a new hearing aid.

We're not convinced. Billy had that surgery on his other ear in the 70's and it left him completely deaf. But, technology being what it is, we remain hopeful there have been enough advances that he'll have a more positive result this time. We can only jump in and cross our fingers.

As you can imagine, we have many questions. Mine center around what happens if it doesn't work. Chances are he'll be completely deaf. They haven't told us yet what the gap time might be between that surgery and the Cochlear implant surgery, which he'll have to undergo if surgery one doesn't work. Is it "just as soon as he heals from the first procedure" or many months later? We'll find all this out during his September 16 pre-op meeting with the surgeon.

Although we're somewhat reluctant to adopt this strategy, we've decided to embrace the possibility that Billy might, in fact, show some improvement. We're also being realistic. If we reject Mass General's recommendation, we'll have to search for another facility that might give him what he wants. That's a total crap shoot, and it seems ridiculous to walk away from one of the premier "ear guys" in the country.

So, we marked our calendars for September 16 and October 5 (the surgery date), and then booked a trip to Puerto Rico, where we'll be from late September until October 1. Then, Billy gets a massage to further relax him two days before the big day, and off we go. We figured filling up our time with some fun and relaxation made a lot more sense than staying in our own environment getting anxious.


how touching

My sister Lori gave me some very good advice during a recent conversation. She told me that I'd have to get used to the idea that Billy and I can no longer communicate in the ways we have come to know. That I was going to have to incorporate a lot more touching to get his attention, and pay extra special attention to if and where he was wearing his hearing aids. I'm happy to say that I have taken her advice and things seem to be a bit improved. I am speaking more slowly, and giving him the time he needs to get all his appliances turned in and turned up before trying to talk.

As long as the equipment cooperates, he seems to be ok. Well, as ok as he's going to be. His ear mold came apart the other day and his mood instantly changed from happy and laughing, to agitated and insistent on visiting his hearing aid vendor who, up until now, hasn't impressed me one bit. But he does the "squeaky wheel" routine with them and they do what they can to pacify him. I let my mind wander to that place where we're past the surgery, and it's a big success, and he no longer needs to worry about broken ear molds or condescending practitioners. Ahhhhhhh.....


a shoe in?

Well, we've met two members of the Cochlear implant team. A wonderful social worker, who's job it is to make sure we're all doing ok on a personal level as this process moves forward, and a scientist who understands all the functionality and technical aspects of the implant devices. They were both wonderful and made Billy and me feel more comfortable and confident about moving forward. Based on their feedback, unless something odd shows up on the Cat scan, it would appear that Billy's case will be approved.

Now we wait to be included on the Cochlear Implant Board Review agenda. They have their next meeting the first week in August. Don't know if we'll part of that, or be delayed until the September meeting. In any event, we just learned that the surgeon's schedule is booked until October. So, even if he's approved, Billy will have to wait at least another two months before undergoing the procedure. Knowing that allows us to do some planning...for a possible vacation, and for the upcoming fall/winter holidays.


why fight city hall?

It seems that each day Billy's "new and improved" hearing device becomes less useful. Or perhaps it's doing exactly what it should, and I mistakenly put more faith in it than I should have. In any event, it's getting harder not easier to communicate with him. I find myself giving up after a few tries. He doesn't hear me anyway. Whatever I'm trying to say just doesn't feel significant enough to repeat 4, 5 or 6 times to have it be heard.

Unfortunately, my frustration is enormous. But I've decided it isn't worth trying to express that in any productive way since he can't hear it. And, quite frankly, he just can't relate. He has his own frustrations, and my ability to relate to his are limited, as well. The silence is growing in the house because of it. I feel more and more disconnected from him. I'm afraid that if I don't find a way to feel better about this and tap into a new reserve of patience and understanding, I will not be the right person to see him through the surgery and recovery. This certainly shines the bright light on all my personal shortcomings...and it doesn't feel good.

I hope the social worker can provide some insight. I don't think I can do this on my own.