Wednesday, February 18, 2009

Brown Paper Packages Tied Up With String...

Yes, in this picture, those are convenient cat-sized holes in the blinds. Loki doesn't like anything getting in the way of his view, so when we moved into this house he politely waited until we went out of town for a while and then fixed the problem in every room of our house, probably using his teeth. I look forward to replacing all of the blinds and possibly also substantial portions of our beige carpet (little tip for you: when you have a child with severe reflux, never feed them dark chocolate Pediasure unless you really didn't like your carpet anyway) whenever we move.

Connor's cardiology appointment went very well. Dr. P took a good look at him, did an echo and an ekg, and then declared Connor's blueness to be probably related to a combination of super, super fair skin tone and mild temperature regulatory issues that his increased activity have aggravated-- nothing to worry about, thank goodness! He said Connor's heart function looks fantastic. He also cleared us for g-tube surgery, so we're good to go. We've scheduled an appointment with the general surgeon in March, and during that appointment we should be getting Connor's surgery date at long last.

Now that one issue is resolved, we have another one to worry about. Doesn't it always seem to happen that way? For about the past week, Connor has been pulling his right hearing aid out. He won't leave it in for more than five minutes at a time. He's usually really, really good about keeping his hearing aids in, and he's leaving the left one alone-- it's just the right one he's pulling out every time. I asked him today if he could hear out of it, and he signed "No. No hear." Now I've checked the hearing aid out, and it's working the way it should be, so I'm wondering if maybe he's had some more hearing loss on that side. To check that, we'll need for him to have yet another sedated ABR. Joy of joys. We're waiting on a call back from his audiologist to see what she wants to do.

That's his better ear too, dang it.

We did have one more big event today. We received a package in the mail, addressed to Connor. I opened it up and took out Connor's long-awaited communication aids and switches! We've been waiting for these things for over a year, people. Bad insurance juju caused some major delays, but finally they are here, and we can't wait to try them out!

Connor is now in possession of two LITTLEmack communicators, one Vertical Wobble Switch, and one Powerlink 3 Control Unit. The LITTLEmack communicators are basically a button attached to a tape recorder. When you hit the button, the recorded message plays. We can use them to help Connor make choices; instead of having him eye-point, we can record two messages and he can push the button for the one he wants. They aren't anything hugely complicated-- nothing like the Vantage Plus the very talented Schuyler is using over at Rob's blog (you should all read his book by the way, as it's fantastic) but they are a start.

The wobble switch helps Connor do activities he wouldn't otherwise be able to do. It's kind of like a giant "on" button shaped like a joy-stick. We can plug it into a bunch of his toys that we've converted to be switch-activated, and he can turn those toys on and off by swiping his hand across his switch. It helps him be more independent as well; he can turn his nightlights off and on himself, as an example.

The Powerlink 3 is kind of like a giant switch board. It can change the function of Connor's switch. With the Powerlink, we can make his switch turn an electronic device on for a certain amount of time instead of just having it be a "one swipe on, one swipe off" set-up. We can also plug things into it that aren't switch adapted, so we don't have to convert them. This is so I can put my son to work. With the Powerlink, he can turn the mixer on for me while I'm cooking, turn on the vacuum to scare the cats away from my potted plants-- the possibilities are endless. I'm sure we'll use it for things other than my personal convenience, too.

We took a class a while back and have converted a ridiculous number of toys for Connor to use with his switches. We really, really like our soldering gun and will jump on any excuse to use it. Our current project is to convert a Powerwheel Jeep so that Connor can drive it with a switch. This has been our current project for the past six months or so, because we only work on it about 15 minutes a week, and in the meantime it has taken up permanent residence in the middle of my office floor in about 800 pieces. I'm sure we'll finish it about the time he outgrows it and can't use it any more. Oh well.


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