Its sorta unofficially official, but we've decided to stop using Lamp's prosthetic arm. At least for now.
I think that's the first time I've said it outloud.
From the outside prosthetics seem like a no brainer. A prosthetic arm allows her to have length, reach and an elbow--something that bends and allows a hand-like device to come up to her mouth. It's the second best thing to having an actual arm. But the fact is, it's not even close.
In truth prosthetics are one of those widely misunderstood things when it comes to limb differences. Just to be clear, I'm talking about upper prosthetics here--they're a completely different ball game from lower prosthetcis. When Lamp was first born we were told by the medical community that her best shot at using prosthetics in the long run is to have her fit as young as possible so her brain basically gets used to the idea of having this extra appendage there, even though there is very little function. As you may recall she took to her prosthetic arm very well. She never used it to grab with her other arm--well, not much--but she used it a lot to lean on and for balance--like in this picture here.
When the time was right to graduate to an elbow we jumped at the chance. Even though it wasn't myoelectric (electronic, moveable parts) we figured it would once again be a training tool. The first problem is that adding an elbow took away her ability to lean on it, because the elbow would just bend and collapse under her. Second, it was heavier. Third, even as a training tool it's not very realistic. She got to the point where she could open the thumb joint, put a goldfish cracker between the thumb and finger and then slowly bend her arm upwards until she could put the fishy in her mouth. A good party trick, but not practical for actually eating 10 fishy crackers in under an hour. There was of course the times we put a sandwich in her hand allowing her to eat it all by herself--that was actually one of the few useful things her arm could do. But even that wasn't perfect as the sandwich needed readjusting throughout the meal. After a few times she didn't want to eat her sandwiches that way anymore.
At our last visit in Dallas I asked the Dr. about her prosthetic. I told him she was only using it during therapy once a week. He said that was fine, we could continue doing that. He's always been supportive of what we wanted to do, but I wanted to know his real opinion. What would he do? He said if it were him he would stop using it. I told him as a mom that can be hard to walk away from because you want to give your child the best possible chance at everything. In our minds an arm and a hand--even fake ones--are giving that best possible chance. He then went on to tell me that yes, the thinking used to be fit every kid as young as possible to help them start adjusting right away. He said they've got a basement full of prosthetics that have been returned to them. Kids, especially congenital amputees, would just rather use what they have. Sensation is key, you need feeling in order to be dexterous. Right now Lamp would rather use what she has...and she's doing really well. He basically gave me the permission I needed to walk away.
There was a time when I couldn't imagine navigating this world without hands. It seemed as necessary as air and water. I now know different. I'm not saying it's easy or going to be easy. It's not. But I have come to realize that there are a lot perfectly able bodied people out there more handicapped than Lamp will ever be. Weaknesses and fears if left unchecked can be more debilitating than missing hands. We all have disabilities. I know, alert the cliche police, but it's a fact. I'm so grateful for a little girl who has taught me that happiness, joy, determination and gratitude make you more able than missing hands make you disabled.
Interesting reading on the topic:
The Myoelectric Myth
Thoughts On Using a Prosthetic from Living One Handed