Thursday, February 6, 2014

Using Technology

It sure has been quiet around here, hasn't it? Well, we're still here and Liam is growing up and proving to us each day what he can do. So where do I begin? To start, here is how he is eating his food these days.

Snack Time

We are still working on his arms, loosening the tendons in his elbows using therapy, so that someday he might be able to bring a spoon or his fingers to his mouth. He's almost there, but he has a little way to go. In the meantime, he's figured out that he can pick up finger foods with his mouth and this is the only way he wants to eat now. We can help him if he has trouble picking something up, but only if he's tried to pick it up himself first.

Interestingly, a couple of my friends sent me this fascinating article. It's a beautiful story about a little girl with arthrogryposis who is fitted with "magic arms" to help her bend her arms so that she can bring food to her mouth and draw with crayons for the first time.

Here is another amazing article about another little boy close to Liam's age with arthrogryposis. He was also fitted with an exoskeleton to help him move with greater ease.

So how does this work? A huge obstacle for people with arthrogryposis is gravity. As described in this medical journal entry about arthrogryposis in the elbow joint, strong  flexors in our forearms allow us to effectively bend our elbow joints against gravity so that we can easily touch our noses, feed ourselves, pick up objects above our heads, and so forth. However, in the case of  patients like Liam, who display arthrogryposis in his arms, these flexors are weak and his tendons in the joint are tight, so his elbow does not bend with ease, thereby creating a struggle to resist gravity's pull to the center of his body.

To remove the obstacle of gravity from the equation, a device called the Wilmington Robotic EXoskeleton (WREX) was designed using 3D printing technology and has been undergoing clinical trials. I am currently corresponding with the responsible research hospital in hopes to have Liam fitted with a WREX device.

In this correspondence, it was brought to my attention that this blog lacks videos displaying Liam's range of motion capabilities in his arms with or without assistance. This week, I kicked off a Youtube channel where I will post videos from time to time, such as the one shown below, of Liam's abilities through his therapy and playtime sessions. Everyone is welcome and encouraged to subscribe to the channel.