Charlie's new arm - test fitting

[marydell]

Here's Charlie testing out his prosthetic arm for the first time, while we and the RIC team try to decide if he should have a fixed elbow or a ratcheting hinge elbow.

Normally they want the kids to learn one joint at a time, so they start with a hinged thumb and a fixed elbow and then when he's learned to work with a wired thumb (that opens and closes through movement in a shoulder harness) they move on to a wired elbow. But the occupational therapists wanted to see how he'd do with a ratcheting elbow, that locks into 3 or 4 positions and then unlocks when it's bent all the way in to the shoulder. Based on how well it seemed to work when Charlie was crawling with it, we and the RIC team opted for the ratcheting elbow. It was cool to see the discussion and decision making process between the prostheticist and the OT who came to this session--they were very respectful and took turns explaining their thinking on the subject, and although the prostheticist was leaning away from the idea of the ratcheting elbow at first, she made up the arm with one for testing and after she saw him with it she was convinced and helped to convince us. Across the board, the people who are working with Charlie on this are really talented and professional, and everyone's been very flexible and seems excited to work with him. Toddler upper-limb prosthetics are still kind of unusual, particularly with elbow involvement--it's much more common, apparently, to be born missing a hand than to be missing both the hand and the elbow. So everyone we talk to is jumping at the chance to see and/or work with Charlie, which makes everything much easier.

The dinosaur-embellished version of the arm will be ready in a couple of weeks, when we go for his final fitting. What he's wearing here is the inner layer but there will be an outer layer that covers most of the hinge.

Comments

[michaeldthomas.livejournal.com]

Hooray Charlie!!!

I just cried a little. :)

[marydell.livejournal.com]

Thanks! And I get misty every time I think about Caitlin and her nectar. Go, go, kiddies!

[rarelylynne.livejournal.com]

Hooray! That just made my morning.

[kyuuketsukirui.livejournal.com]

Wow, it looks like he's taking to it really well.

[marydell.livejournal.com]

Initially he did, then he moved into "aaa get it off me!" mode for a little bit. Mostly he was ok with it, though.

[dharma-slut.livejournal.com]

Oh, my.

I watched this with my mouth open and a lump in my throat. That's brilliant!

I can imagine his muscles must have been sore pretty quickly. His back, moving the extra weight of the arm, and in configurations he isn't used to as he moves forward...

[marydell.livejournal.com]

At this stage the extra weight will not be too bad, I hope, because he's not walking yet. So when he's crawling it will provide protection for the end of his arm (but also deprive him of sensation; a necessary tradeoff), but his weight is leaning into it rather than it pulling on him. When he's sitting up it does weigh on him, which is ultimately a good thing for his balance and muscle development, but hopefully it won't make him too sore. We expect a good deal of annoyance, though, because he's learned to use his short arm reasonably well to help him with holding balls and so forth, and he will have to re-learn that. On the other hand (pardon the pun), he is extremely delayed in learning to use his hand, and we think having symmetrical limbs may help with that--even after a half-hour session wearing this arm and playing with toys with an occupational therapist, he was much more active with his hand well into the evening.

This is so exciting, but also SO FREAKY, emotionally speaking. I don't want to change him, you know? But this will help him so much. Also, robot arms=cool.

[dharma-slut.livejournal.com]

The blessings of being a geeky mother...

A dear friend of mine, wanderingaengus wrenched his lower leg off in a horrific accident. his intellectual nature really made a difference in his recovery time...

[kate_nepveu]

That is really really neat.

And baby hand development is one of the ridiculously cute things, besides of course being good for them!

[haddayr.livejournal.com]

I was wondering if he'd be annoyed with it after a while, or what. I eagerly look forward to developments, and thank you SO much for emailing this to me!

I was quite startled by how the arm works. Technology, maaaaaan. AfuckingMazing.

[marydell.livejournal.com]

He became annoyed with it very quickly, partly because the part where it meets his chest is a little too tight. They are going to flare that out. They said the thing to do is just distract him from it so that he doesn't notice it, and that seemed to work pretty well for the rest of the session--he'd try to shake it off but if we put a toy in his other hand he'd ignore it. Once he's used to the weight, then we can direct his attention toward the arm to learn more about it, but initially it's all about directing him away from it.

That concept felt weird and upsetting to me and Mike at first, because with C's rash and stomach problems we've put a huge effort into making him comfortable and now we've got to make him uncomfortable! But thinking of it as a medical device that we need to distract him from shaking off makes that easier--he had an IV in his hand for 3 days back in January, and we got him through that without too much misery, so this should be a much easier adjustment. Um, we hope. I will be vidding and blogging the process extensively, of course.

What's really cool about this arm is that when he tries to shake it off it moves in a natural armlike fashion, which means he learns stuff about it even when he's fighting with it.

[haddayr.livejournal.com]

What's really cool about this arm is that when he tries to shake it off it moves in a natural armlike fashion, which means he learns stuff about it even when he's fighting with it.<.i>

Now THAT'S engineering.

Don't you think that if it were really THAT uncomfortable, he'd refuse to be distracted from it? When my boys had ear infections, nothing would distract them, for instance.

I'm glad they're going to alter the shoulder harness for him, though.

I have to say that the professionals I have met in the field of disability mobility/function support have been some of the most intelligent, creative, and thoughtful medical professionals I have ever met. I'm so pleased that you're having a similar experience.

[marydell.livejournal.com]

Charlie is very easy to redirect, unless he's in a lot of pain, and even then he responds to forceful soothing actions (tight swaddling especially). It's WEIRD. Our family is rife with attention surplus/deficit, obsessive thinking, ruminating, anxious & hyperactive types (very much including myself & Mike). If you were to stick a banana sticker on my hand and tell me to ignore it, my head would explode. (Sticker, sticker, sticker OMG Sticker!!!) But he seems to be able to ignore things like an IV stuck in his hand, as long as we keep him entertained somehow.

We tend to refer to this quality of his as "zenlike," since we are all about embracing the stereotypes.

[txanne.livejournal.com]

Wow, it looks like he caught on fast! Go Charlie!!

[rivka.livejournal.com]

OMG, that's the coolest thing. So exciting!

[kalmn.livejournal.com]

whoa! go, kiddo! he looks like he's getting the hang of that.

[jerusha.livejournal.com]

Oh, wow! It's going to be so cool to watch him get used to using that!

[fadethecat.livejournal.com]

That is so amazingly neat to watch. I have no idea how it feels for him, but in the video, it looked a lot more like "toddler moving with unusual body part" than "toddler moving with arm-shaped tool".

[evilrooster.livejournal.com]

It looks like he's having a fantastic time with it. Wonderful to see!

[kcobweb.livejournal.com]

That's really cool. Yay.

[raqs.livejournal.com]

Wow, he's cooking with gas there! Go him!

[cristalia.livejournal.com]

Oh, man. Lookit that grin. :)

[browngirl.livejournal.com]

Wow.

This is an adventure of discovery and motility.

[readinggeek451]

Oh, hey! Way to go, Charlie! It's a little out of proportion at first glance, but as soon as he started to move with it, it became just an extension of him. Very cool.

[etumukutenyak.livejournal.com]

Wow..he does so well normally that this arm just seems to fit right into his world. He seemed mildly intrigued by the other fingers, and that was about it.

Dinosaurs will be totally cool. When my son was about 2.5 to 3, he liked to pretend to be a dinosaur, which occasionally startled people in public when he roared.

[fledgist.livejournal.com]

My older son, at one, would point to every man and call him "daddy". This embarrassed his mother considerably.

[unhappytriad.livejournal.com]

That is just amazingly cool. Go Charlie!

[gailmom.livejournal.com]

go, Charlie!!!

From those 51 seconds at least...looks like he's gonna take to it like a duck to water. :D

[aedifica]

Wow! It was amazing to see how well he seemed to be working with it.

[icecreamempress.livejournal.com]

Thank you so much for sharing this! I have been thinking about Charlie's bionic arm since you mentioned it, and seeing him experiment with it is really wonder-making and touching and cool beyond words.

He could not possibly be any more adorable. Just no way, no how.

[lydy.livejournal.com]

Very cool. He looks to be in charge of that arm. Go Charlie.

[serge-lj.livejournal.com]

Yay for Charlie!

[fledgist.livejournal.com]

Good for Charlie!

Dinosaur-embellished?

[marydell.livejournal.com]

The outer layer of the arm can either be "flesh" colored, or can have a fabric laminated under clear resin. We opted for the fabric, of course.

[rikibeth.livejournal.com]

Dude! He already figured out how to use the prosthetic hand to bat the block around!

Your baby is AWESOME. And so's his support team.

[marydell.livejournal.com]

Actually he hasn't figured that out; it's doing that because he's moving his arm to crawl on it. But the elbow is designed to naturally let the forearm reach forward when he moves his upper arm forward, which is pretty cool.

He is an awesome baby, and we're very lucky to be able to work with the folks at the RIC.

[rikibeth.livejournal.com]

Okay, maybe the arm did the batting as a side effect, but I swear in the video I saw him NOTICE that it had happened, and then came the grin! He'll figure it out fast -- your baby is no slouch.

[marydell.livejournal.com]

You did see that! He just doesn't have the cause & effect worked out yet. But I'm sure he will--you're right, he is good with the figuring.

[tania-c.livejournal.com]

That is wonderful and fabulous. :) Go Charlie Go!

[lenora-rose.livejournal.com]

I work in an office for preschool and school-age OT/PT, and just down the floor from the related Prosthetic and Orthotic Clinic. They would so love to see this.

[marydell.livejournal.com]

Oh, cool! Please feel free to share it with them. Charlie's photoset is over here: http://www.flickr.com/photos/thrawn150/sets/72157605817375496

There's another very short video there, plus a photo of the arm in its current state - http://www.flickr.com/photos/thrawn150/3661600550/in/set-72157605817375496

I'll be continuing to post vids there and link them here as we move along through the process.