Robot Arm with Frickin Lasers!

[marydell]

So, here is the overdue update on the plan for Charlie's prosthetic arm.

We met with the nice people at the prosthetic & orthodic department of the Rehabilitation Institute of Chicago.  My sister rehabbed at RIC after her stroke, 35 years ago, and she was able to accomplish a huge amount there, so taking Charlie there was the natural choice.  Also they run a pediatric limb deficiency daylong clinic every few months where the kids can meet each other and see an orthopedist, a prostheticist, a physical therapist, and an occupational therapist all in one go. We'll be doing that in August when the next one happens.   Oh and also, as it turns out, they're a national leader in prosthetics R&D, including bionics (More info here).  So we're excited to be able to get Charlie started with them so early in his life.

Anyway, they said Charlie's a very good candidate for a prosthetic arm, and since he's sitting unassisted and crawling he's definitely ready for one. Since he is lacking the left elbow as well as hand & forearm, the beginner prosthetic arm will have the elbow fixed in the bent position, with a molded hand that has a manually-operated opposable thumb so that he can hold things in it.  It defaults to a closed position so he won't drop stuff.


We've chosen a body-powered arm rather than a myoelectric one--myoelectric (controlled by muscle signals & sensors) is cooler, but more specialized and harder to take care of and possibly harder to use, at first anyway.  The body powered arm will give him the body skills he needs to go in a lot of different directions with prosthetics use when he's an adult. So, once he's gotten used to wearing the arm & the associated harness, and using the hand for some stuff, he'll upgrade to a "voluntary opening" hand with a wired thumb, that will open when he moves his shoulders a particular way in the harness (probably in a year or two?). Once he masters a voluntary/wired hand, he'll be upgraded to a wired elbow as well.

As he gets older, he'll get new molded socket inserts a couple times a year, and a whole new arm mold about once per year.  The hands only come in a few sizes so he won't have too many hand swaps as he grows up.  However, once he's using the adult size arm/wrist mount, he will be able to use an amazing variety of specialty replacement hands.  My favorite is the camera mount.  The basketball hand is also pretty awesome looking: 


Once you let go of the idea of making it look or function like a human hand, all kinds of stuff is possible. 

The coolest thing about this first arm? We said we're not interested in a cosmetic prosthesis for him; we want him to feel his body is whole without (most of) a left arm, and that the prosthetic arm is a really cool tool.  They agreed with this--children who are born with a limb absence don't have the sense of loss that people who lose a limb do. The hand will be caucasian flesh color (it only comes in 3 colors, and that's the closest match to Charlie's skin), but for the rest of the arm they will take any piece of stretchy fabric I care to give them, and laminate it into the arm.  OMG SO COOL!  I have some dinosaur fabric that I think will be perfect.

The plaster casting of his arm will happen on June 10, followed by a couple of fittings and then ongoing physical therapy. YAY arm! Giving a weapon to a 1-year-old baby, possibly not awesome from the POV of the people around him, but overall this is going to be AWESOME.

Comments

[txanne.livejournal.com]

Damn that's cool! Make sure he reads _The Moon is a Harsh Mistress_. Or at least the parts about Manny saving the day with number-three micromanipulator arm.

[marydell.livejournal.com]

Yeah, I'm looking forward to reading that, and having him read it. Apparently I also need to be watching Fullmetal Alchemist.

[michaeldthomas.livejournal.com]

That is awesome news!

[rikibeth.livejournal.com]

I can't wait to see pictures of it with the dinosaurs!

[browngirl.livejournal.com]

I found myself reminded of Manny from The Moon is a Harsh Mistress; I bet he had a basketball hand. But anyway. This is really cool! Lasers and all. :)

[etumukutenyak.livejournal.com]

This is awesome! My hearing aids don't have any frickkin' lasers.

[elettaria.livejournal.com]

Good heavens, that's astonishing. The specialty hands are indeed exciting, from the fin-like swimming one to the music ones to the archery one which looks like Captain Hook! It's odd, though, I'm noticing that one or two of them prompt a instinctive reaction of discomfort: something I could perfectly well get over, and would absolutely train myself to do if need be, of course. I'm more interested in it as an instinctive human response. Eyes provoke a similar response, and as someone whose mother has a very nasty eye condition for which she's just had surgery, I know how common it is for people to flinch and go a bit green when you start talking about anything icky to do with eyes. Perhaps it's because eyes and hands both give us a great deal of power but are also very vulnerable? Horror films tap into this common fear in a big way, and there was one shot of three prosthetic hands which made me feel as if I was watching Titus Andronicus (where there's a lot of mutilation, and at one point the stage direction Enter Messenger with three heads and a hand). I've read various articles about bloody Freud and his castration theories about eyes, which I always considered to be total rubbish (partly because Freud was batty on some subjects, partly because his idea of research was basing an entire theory on his daft interpretation of a single short story), but I can't think of anything I've read about hands.

I know you've talked about how you are doing a good job of provoking the "awww cute baby!" response rather than the "argggh missing arm!" response through the way you present Charlie and yourself, and I'm sure you're far more aware of this than I'll ever be. I'm curious to hear your thoughts on the topic, and I'm also wondering if and how people's responses will change when Charlie gets his robot arm. I should reread that Sara Maitland novel about the woman who ends up getting a prosthetic hand as an adult some time when my eyes are better, it was fascinating.

Going back to the prosthetics, I'm really glad it's going so well. Your clinic sounds fantastic. How do they deal with the rapid growth rate at this stage? Will the prosthetic have adjustable bits to cope with growth?

Would you be interested in submitting photographs to this website (http://skincoloured.wordpress.com/) once Charlie has his arm? (It's UK-oriented, but this would still be highly relevant.) I'm not saying that the options provided should be automatically disparaged, they do have some choice after all, but I think it's certainly worth discussing. How difficult would it be for the prosthetics companies to provide a greater range of skin colour choices? Do the options available vary depending on the ethnic make-up of the population in the area where they're being produced?

[marydell.livejournal.com]

As I've said before, cosmetic prostheses come in every possible skin color, but we're not interested in sacrificing function for appearance. Since Charlie is quite pale, and more rosy than sallow, the caucasian skin tone is about as good a match for him as it would be for me.


I'm sorry to hear that my child's condition makes you uncomfortable and puts you in mind of Titus Andronicus. I don't think my journal is the right place for you to unpack that.

[elettaria.livejournal.com]

Your child's condition doesn't make me uncomfortable at all, and I'm sorry if I gave that impression. It was specific images of prosthetics that looked like flaps in a place where you'd expect a hand, and it was one of these reactions that hits you for about half a second, probably relating to a subconscious fear of squashing your hand in something. As for Titus Andronicus (which I've studied a lot, so it leaps to mind), it was an image of four disconnected hands alone, so yes, that does look like artificial representations of severed hands, and severed hands are (unfortunately) commonly used as an image of horror in this society and have been for at least the last four centuries. I'm mildly squeamish myself but I don't think it's ever applied to disability stuff (I was fine when my aunt had her eye removed etc.), it's more that I hide my face when there's gory stuff in films. But I have met a few people who really do get wound up about eyes or hands. I got my hands stained orange and grey from henna and indigo once, and I had a friend who was really bothered by it and said he couldn't look at them. And as for eyes, a great many people get the shivers at the mere idea of contact lenses! I was just trying to think my way through why that's a common area for fear, and I assumed that you were engaging with this because your suggestion of putting dinosaur fabric on the prosthetic arm sounded to me like a way of deflecting this sort of anxiety, clearly signalling that it was about fun and empowerment. (Incidentally, I have no idea what sort of fabric would work best, but quilters' fabrics come in a huge range of designs and might be a good place to start. I can't remember if I've seen dinosaur fabric, but I've seen huge numbers of very cute animal fabrics, including dragons, and the pattern is likely to have a small enough scale, and have the dinosaurs at different angles so it wouldn't matter that it was an irregularly-shaped piece.)

I'm sorry, I've been disabled for twelve years and I'm used to thinking about negative perceptions as well as the positive aspects of disablity aids, because whether I like it or not, I have to deal with those perceptions and try to head them off, and a lot of them are based on fear. I'm fascinated by constructions of and social responses to disability, I didn't realise you'd find it upsetting to look at this angle, and it was tactless of me considering that this post was about celebration. I'm also interested in the "cool and exciting toy" response which a lot of people seem to be exhibiting, to give a less emotionally charged example. Or the way that children often react more positively than adults. Or the way people use images from sci-fi, often with a heroic slant, as a way of approaching prosthetics etc. more positively, whether it's you talking about a "robot arm" or my stepdad, who's had a knee replacement, joking about being a "bionic man". Anyway, I have a terrible habit of analysing anything in sight and did barge in without thinking it through enough here, so please do accept my apologies.

And now that we've established that we're not trying to have a fight here, am I allowed to dissolve into a puddle of goo at the adorable photo where you're holding hands?

[marydell.livejournal.com]

I know you've been dealing with disability issues for some time, but you're displaying, and defending, negativity toward deformity and/or traumatic injury which is ableist. It is not ok to be squicked by prosthetic hands that don't look like hands because they put you in mind of traumatic injury, AND SAY SO TO ME in a post where I'm talking about how excited I am to give a hand like that to my son. Those "prosthetics that look like flaps in places where you'd expect a hand" are part of his condition, and I find them delightful and charming. Pointing out that they or the other hands on the TRS site remind you of horrifying violence is ableist, and frankly is seriously harshing my squee. I'd like this discussion to end right now. Thank you.

[pnkrokhockeymom.livejournal.com]

I maintain my previous position: Charlie? Coolest Baby Ever.

This is so exciting!

Now coffee and meetings, otherwise I'd go on.

[marydell.livejournal.com]

I won't tell your now-nearly-grown-up baby that you said that! But I agree :)

[unhappytriad.livejournal.com]

How extremely awesome. One of the cool things about having kids is they can do things/go places you can't, and to some extent you get to share in those different worlds. (Says the mother of a stuntwoman, a composer and a bass player.)

[marydell.livejournal.com]

Ooo, you have cool kids! And yeah, we're really looking forward to seeing how Charlie reacts to the arm and what he does with it.

[mrissa.livejournal.com]

Nifty! I'm so glad things have progressed to the point where he'll have cool tools.

[princessofg.livejournal.com]

this is way cool. thanks for the update.

[gailmom.livejournal.com]

cool, thanks for the update. Please tell me you plan to have pics and/or video of him trying it out for the first time? He always gets the bestest expressions when something surprises or interests him, and I can only presume this will do both. :D

I love all the specialty attachments, it's extremely cool that they have so many different ones for whatever hobby or pastime floats one's boat. :)

more cute baby pictures please...I'm going into Charlie withdrawal. (and has he worked through his bear-fear yet? I'm worried about poor Panda)

*excited happy internet hugs for you both*

[marydell.livejournal.com]

I have to put up more pics! I have a video of him petting the panda, who is now his friend, that I will try to get up this week.

We're hoping to get a little flip video cam so we can vid the whole process--also I need a camera that doesn't suck! I bought my current camera as a little cheap handy cam to keep in my purse in case something interesting happened. Less than a month later, along comes Charlie--had I known I would have gotten a nice portrait camera. Maybe I will make sad puppy eyes at my brother and see if he will give me his old SLR....otherwise I'll have to bite the bullet and get my own.

[evilrooster.livejournal.com]

Oh, you must video it! I'd love to see him explore the experience.

Maybe when Charlie's older, video cameras will be built into prostheses. Certainly, I hope that thumb drives, or whatever will replace them, are ubiquitous. Imagine being able to just stick your finger in the computer and do data transfers. I'd be envious.

This is just insanely neat from every angle I look at it.

[jesse_the_k]

As far as prosthetic data storage it's already here: a true USB thumb drive.

[haddayr.livejournal.com]

YAY!

I love all of the specialty hands, too, especially the biking and swimming, of course.

[aedifica]

I'm glad you're so excited about this! Neat!

You've read LMB's Sharing Knife series, right? One more book/series with a major character who has a prosthetic hand.

[marydell.livejournal.com]

I haven't yet, actually, although I bought the first one and hope to get to it eventually. I don't recall if I picked it up because of the hand thing or just on general principles.

[lydy.livejournal.com]

Specialty hands! What could be cooler? I always loved Manny's different arms in Moon. I'm curious how a child as young as Charlie can learn to control his new arm. He's not speaking yet, even. Not being a mother, I forget how capable pre-toddlers can be.

[marydell.livejournal.com]

Even being a mother, I forget! I think you have to have 3 or 4 before you get used to it. We keep being surprised whenever he does things that are smarter than a cat. Like, when confronted with an obstacle, he examines the obstacle and figures out how to move it, instead of finding an alternate path, like a cat would.

Anyway part of the benefit of starting a young baby with a prosthesis is that he doesn't really know what his body can do yet, so this will be just one more thing for him to figure out, instead of something alien-seeming. We're hoping that having it will help him to crawl a bit better and also to start pulling himself up to standing--being able to use it for balance, basically. Also it may help him in chasing food around his tray, since he's learning to pick food up and eat it. But really we have no idea what he'll manage to do with it...it'll be cool to see how it goes.

[icecreamempress.livejournal.com]

DINOSAUR ROBOT ARM WITH SPECIALTY HANDS!!!1!!

Your son is a goldurned superhero, is what. In addition to The Power Of The Cute, he will soon have a Dinosaur Robot Arm With Specialty Hands.

This calls for a guest appearance by Wolverine.

[marydell.livejournal.com]

I know! He also is going to need a manga name, unless we just call him DINO BOT all the time, which seems likely, since his daddy is a transformers fan (Mike suggested naming him Shockwave (http://www.vagabondish.com/wp-content/uploads/shockwave-transformers.jpg), but I said NO).