Tuesday, April 29, 2014

An Unexpected Turn

I would like to take a moment to thank you all for your love, support, thoughts, and prayers. We felt them all last Thursday when we made our trip to Nemours duPont Children's Research Hospital where Liam was evaluated for his candidacy to receive assistance from their Wilmington Robotic EXoskeleton (WREX) device which would provide him with freedom of mobility in his arms so that he could easily feed himself, hold crayons and draw, and wrap his arms around our necks.

Liam was not considered a candidate for the robotic arms at this time. This turned out to be unexpectedly great news. The doctors and therapists (five in all) that evaluated him agreed that he shows so much potential in the progress he has made so far, that they are concerned that the WREX device would only hold him back. It was recommended that we continue the aggressive therapy he has been receiving since birth. They offered tips and advice which would accelerate these efforts. They asked us to keep them updated with photos and videos of his progress and perhaps sometime in the future, he will be considered again for his candidacy for the WREX device once he has reached his expected potential.

In the meantime, the doctor, who is a specialist in Arthrogryposis, and the occupational therapist on her team recommend that Liam gain as much passive motion in his elbows as possible. This means that they want him to be able to bend his elbows a little more on his own. The occupational therapist fashioned an elbow splint to be applied to Liam's left elbow while he sleeps so that it will start bending as well as his right elbow currently bends.

While we are on the subject of great news, the physical therapist examined his use of his new ankle foot orthotics (AFO) and determined that he is ready to be walking any day now. She predicts that he will be walking in them, unassisted, in two months! Before the physical therapist saw him, the doctor had just suggested that he may need a cumbersome leg brace which would reach from above his hips to his feet and help him develop walking muscles over time. Thank goodness that won't be necessary! 

The physical therapist also recommended we no longer use the supine stander which is pictured in an earlier blog post, as at this point, he needs to work on balancing on his own two feet. Furthermore, she suggested we cut holes in a pillow case, put Liam's legs through the holes and let him walk, catching his falls with the pillow case so he can learn to balance himself. Alternatively, we could use a pair of denim jeans for the stronger, sturdier fabric. My husband's stepdad suggested we use Liam's overalls! 

 You can see how ready he is to take off running! 

We certainly feel our trip was worthwhile. Liam was evaluated by doctors and therapists specializing in Arthrogryposis. They took one look at him and knew everything about him and his needs before they examined his joints and body. This is what they do and they are exceptional at it. They would like to continue seeing Liam for treatment and future surgeries to loosen the tendons in his elbows and wrists. They also asked us to consider returning for therapy services on top of his existing therapy services. They see what we see in Liam. Hope for his Arthrogryposis.

However, we do not currently have out of network coverage with our health insurance and continuing treatment with these specialists is beyond what we can currently afford. We are discussing strategies and options at this point and are open to suggestions. We ask that you continue to keep us in your thoughts and prayers. Thank you all again.

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.