Prosthetic Re-training
Nov. 26th, 2009 01:17 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
marydellBackstory: Charlie's robo-dino-arm has a ratcheting elbow, which allows him or us--theoretically--to position the elbow at different angles, so that he can reach for things or do stuff that's not at torso midline. The prostheticist was reluctant to use a jointed elbow on such a young person, since they like kids to learn to understand the hand before they try to figure out the elbow. But the OTs at the rehab felt strongly that it would be helpful for him, and after a group discussion we & the prostheticist agreed to try it.
I say "theoretically" about the elbow positioning, because in practice, the whole arm is like a big shoe to Charlie. It's just a thing that covers his arm, that he can lean on and that is fun to shake around occasionally. (He only wears it for about 4 hours a day, because it interferes with some of his activities, but it helps with others. A longer post about that is forthcoming). When we reposition the elbow--or it repositions itself--that just confuses him. So we've kept it positioned at 90 degrees by a little judicious hackery. We were careful not to alter the function of the thing or risk breaking it--our hackery involved sticking socks in the forearm to prevent the ratchet from ever reaching its "unlock" position.
Unfortunately, it broke anyway--a part inside the ratchet cracked* and so the arm decided to flop open into a straight position, which is totally useless and not helpful for a boy who spends his whole day crawling. I dropped it off for repair two weeks ago. At my request they glued the other side of the joint to fix it at a 90 degree angle indefinitely--they can heat up the glue and remove it if we want them to, but otherwise the arm will stay in one position. They still need to fix the ratchet for possible future use, but they've been waiting for the part this whole time...finally they said I could just come get the arm so he could have it back until the part comes in next week. So now he's been without his arm for 2 weeks. During the first week he seemed to miss it, looking around for it when I would dress him in the morning, but by the second week he'd stopped noticing.
I tried putting it on him when I got home with it Tuesday after work and he was having none of it. I decided to wait until today, when I have a lot of time at home with him, and put it on him after his nap this morning.
He hated it. He didn't protest when I put it on, just looked sad, and he played wearing it for a while--sitting in once place, mostly--but didn't smile much and generally had the resigned attitude he employs for medical experiences. Eventually he moved on to crawling, and the arm shifted a bit and got in his way, leading to him yelling briefly in frustration and then biting it. At that point I figured he was done with it for the day (after only about 40 minutes of wear) and went to take it off of him--as soon as I got the strap loose he grabbed the arm and pulled it off himself. I kept it on the floor with him for a bit so he could at least get used to having it in his space a little while longer, which he didn't mind, but he ignored it. He was cheerful as can be once he wasn't wearing it any more.
Do Not Want
When we started him wearing it the first time, several months ago, he was also uncomfortable with it and it got in his way a lot, but wasn't sufficiently spatially aware to identify the arm as the source of his troubles. Now he's pretty clear about where the difficulty is coming from, so getting him to work through the awkward parts is going to be a little harder. Particularly with another week-long hiatus on the horizon when the ratchet part comes in. But we have to get used to this training & re-training habit, since everyone I've ever known who has a prosthesis spends at least some of their time not having it, waiting for repairs or refits. Ongoing ambivalence about the device & its limitations seems to be part of the experience for many people...I guess it will be for Charlie, too, at least for the next little while.
*possibly because he spends all day crawling army-style, so the elbow gets whacked into the floor over and over. I think it would be fine if he was walking, but this seems a bit like putting a jointed heel onto a prosthetic foot would be, in terms of how it's affected by impact.
I say "theoretically" about the elbow positioning, because in practice, the whole arm is like a big shoe to Charlie. It's just a thing that covers his arm, that he can lean on and that is fun to shake around occasionally. (He only wears it for about 4 hours a day, because it interferes with some of his activities, but it helps with others. A longer post about that is forthcoming). When we reposition the elbow--or it repositions itself--that just confuses him. So we've kept it positioned at 90 degrees by a little judicious hackery. We were careful not to alter the function of the thing or risk breaking it--our hackery involved sticking socks in the forearm to prevent the ratchet from ever reaching its "unlock" position.
Unfortunately, it broke anyway--a part inside the ratchet cracked* and so the arm decided to flop open into a straight position, which is totally useless and not helpful for a boy who spends his whole day crawling. I dropped it off for repair two weeks ago. At my request they glued the other side of the joint to fix it at a 90 degree angle indefinitely--they can heat up the glue and remove it if we want them to, but otherwise the arm will stay in one position. They still need to fix the ratchet for possible future use, but they've been waiting for the part this whole time...finally they said I could just come get the arm so he could have it back until the part comes in next week. So now he's been without his arm for 2 weeks. During the first week he seemed to miss it, looking around for it when I would dress him in the morning, but by the second week he'd stopped noticing.
I tried putting it on him when I got home with it Tuesday after work and he was having none of it. I decided to wait until today, when I have a lot of time at home with him, and put it on him after his nap this morning.
He hated it. He didn't protest when I put it on, just looked sad, and he played wearing it for a while--sitting in once place, mostly--but didn't smile much and generally had the resigned attitude he employs for medical experiences. Eventually he moved on to crawling, and the arm shifted a bit and got in his way, leading to him yelling briefly in frustration and then biting it. At that point I figured he was done with it for the day (after only about 40 minutes of wear) and went to take it off of him--as soon as I got the strap loose he grabbed the arm and pulled it off himself. I kept it on the floor with him for a bit so he could at least get used to having it in his space a little while longer, which he didn't mind, but he ignored it. He was cheerful as can be once he wasn't wearing it any more.
Do Not Want
When we started him wearing it the first time, several months ago, he was also uncomfortable with it and it got in his way a lot, but wasn't sufficiently spatially aware to identify the arm as the source of his troubles. Now he's pretty clear about where the difficulty is coming from, so getting him to work through the awkward parts is going to be a little harder. Particularly with another week-long hiatus on the horizon when the ratchet part comes in. But we have to get used to this training & re-training habit, since everyone I've ever known who has a prosthesis spends at least some of their time not having it, waiting for repairs or refits. Ongoing ambivalence about the device & its limitations seems to be part of the experience for many people...I guess it will be for Charlie, too, at least for the next little while.
*possibly because he spends all day crawling army-style, so the elbow gets whacked into the floor over and over. I think it would be fine if he was walking, but this seems a bit like putting a jointed heel onto a prosthetic foot would be, in terms of how it's affected by impact.
