Work and Play

It seems we are always looking for new ways to help Liam increase mobility in his muscles and joints. Well, it turns out, that over the course of the last few weeks, Liam has shown us a thing or two in what works best for him. When his physical therapist introduced him to a toy that he can activate by sitting and pressing a button, he was thrilled and shrieked in excitement.

Overnight, he seemed to be sitting up so much better on his own. Keep in mind, that though he is 10 months old, he is still struggling even with prop sitting. This is due to the awkward positioning of many months worth of castings on both of his legs. He has not been able to work to this milestone without a major obstacle. In the meantime, we have worked on other milestones, such as rolling front to back and back to front which he has mastered.

Most recently, we have been trying to find a way for Liam to effectively play with his toy laptop computer. It has these wonderful buttons that he loves to press. However, the restrictions in his elbows, wrists and shoulders prevent him from controlling the toy. Then I remembered we have a little stool that converts to a little chair. We use it as a makeshift desk for his little computer. Now, for the first time, he is motivated to press the buttons with his individual fingers rather than the flat side of his hand.

Can't you see I'm working here, Mom?

This little guy is going to be a computer whiz like his Dad!

We are also seeing a lot of increased range and mobility in his shoulders. We can lift his arms pretty high and open them up pretty wide. But the distance he can stretch himself is a different story as he is challenged by the shortened tendons in his joints. But as he continues to explore his environment and play with his toys, the tendons stretch and loosen and create less of a challenge each day. Also, of course, aggressive therapy plays a major role in his continued success.

Playtime and Other Things

Just as the last several months, this past month has flown and now we are few days away from Liam's 10th month birthday! I have been witness to a steady increase in his alertness and perception of his surroundings. In therapy, Liam has been introduced to toys that create a "cause and effect" scenario. For example, when he presses a button or a switch, the toy will make a loud cheerful sound or release another toy such as a ball. His success in activating such toys is lately met with a delighted screech. It's so unexpected, I haven't been able to catch it on video yet.

Further to Liam's success with his toys is that he is even more motivated to learn to sit upright unsupported. This is also somewhat unexpected. After many months of castings on both of his legs, we expected Liam to be further behind schedule in this milestone. In this, he is proving to be an overachiever and in a good way!

And speaking of milestones, we have accepted that Liam will likely learn to walk without ever crawling due to the restrictions in his elbow and shoulder joints. However, he is rolling around all over the place. So we now have a large play mat for him to roll all over to his heart's content. He loves it!

As a last note regarding toys, he particularly favors any that he can easily get a grip with his hands as pictured
below. His favorite is a rubber ball with holes all around it so he can hold on to it and move with it. It provides an incredible stretch to his fingers, hands, wrists, elbows and shoulders that he does all by himself! So, to any others out there who know children with arthrogryposis in the upper extremities: this toy should be high on your list!

Play Time

One of the many challenges for an infant with any kind of restrictive muscular disease is finding motivation to explore the world around them. Fortunately, Liam has been very motivated since birth to seek and explore his environment. In the beginning, my husband and I were instructed to give Liam therapy in his hands, arms and shoulders during feedings to loosen up the tightness in his muscles and his joints. Regular therapy sessions have instructed us on different approaches to take to maximize his range of motion. 

It has been one of our goals to teach Liam how to move and play independently, therefore providing himself with therapy while having fun with it. As he gets older (he is now 8 1/2 months old), he becomes more alert and aware of everything around him and what he wants to do with it. No matter the obstacle, if he wants to do something, he will find a way to do it. An obstacle he faces right now is his special boots with the Ponseti bar. But even with this device on, he plays and moves. Currently, his favorite mode of transportation is rolling over onto his belly and continuing onto his back, repeatedly. In a blink of an eye, he is across the living room moving this way, Ponseti bar and all!