Pending Breakthroughs

I realize it has been a long time since I've posted any updates and it hasn't been for any lack of progress in Liam's developing independence. He has been busy these last few months as we set the course for his next milestone breakthroughs. In September, his therapy sessions were renewed as per a bi-annual evaluation requirement. Last month, he was measured and fitted for a new supine stander which will be customized for his unique needs. 

However, Liam has been showing a lot of determination to learn to stand on his own two feet. He really wants to take off running especially when he sees other kids close to his age taking off. I decided to put together a little riding toy to see if it would encourage him get used to the idea of using his legs. It came with rockers to attach to the wheels to start off as a rocking toy, but Liam didn't care for that function. So I took off the rockers and here is the result. 

Now, even his Physical Therapist questions whether he will even need the customized stander by the time it arrives. Even during therapy sessions when she stands him on his feet, he no longer resists and instead continues to instinctively push down into his feet increasingly bearing more of his own weight through his legs. 

Practice standing in Physical Therapy (look at his arm bending!)

To further add to the topic of Liam's independence, we are also seeing much more use in his hands and arms. He has even started to bend his right elbow independently! In response to this breakthrough, his Occupational Therapist has spent the last few weeks designing a customized splint to fit to his elbow to encourage him to use it more. She has also taken one of his feeding spoons and creatively applied a combination of weather stripping from the hardware store, a tongue depressor, and electrical tape to fatten up the grip and lengthen the handle so that Liam can attempt to feed himself. For now, we are working on getting him accustomed to the elbow splint so that he can get more range in his elbow before we tackle the self-feeding obstacle.

Bending his elbow! (He's only crying because he was cranky. He gets this range in his elbow by himself).

Customized elbow splint.

Playing with the splint on.

Adaptations

It's hard to believe that in just a few days, Liam will be 9 months old already! Time has flown by so fast and this little boy is growing even faster. He is as fun and as motivated as ever. What a joy to have around! Also, Liam's orthopedist and his Occupational Therapist have said that every one of the arthrogrypotic patients they have worked with have been exceptionally bright and quite distinctly so. We can already see that Liam is very smart too. He had started to say "mama" and "dada" at barely 8 months old! What an incredible guy!

One of my goals is to give Liam the gift of independence. It became easy for me to see now how much we take our independence for granted once I realized that Liam may not even be able to feed himself for several years to come unless we take the necessary steps to facilitate self-care. I have asked his therapists to help me brainstorm ways that we can adapt his feedings so that I can start teaching him how to hold his own bottles and eventually to bring his own spoon to his mouth. He may seem a little young for doing all of that now, but now is the time for him to start learning. 

The challenge that Liam is facing is that his elbow joints are still too tight that they do not fully bend yet. They are getting looser, thanks to the daily massages and regular aggressive therapy he has been receiving. And while we haven't thought up any major adaptations yet, we have figured out how to prop his bottle in such a way that he can hold onto it while giving his fingers, thumbs and wrists the mild stretch that they regularly need. He really enjoys it!