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.

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.

What's New?

You're all familiar with the saying "no news is good news," right? This certainly applies to Liam currently. Next week, we return for a routine check-up with his orthopedic doctor for the first time in 4 months! Why the exclamation? Well, it's pretty exciting that we have not needed to see this specialist for so long, considering the first 8 months of Liam's life meant weekly visits for cast changes and two separate surgical procedures to his ankles. We are all certainly blessed!

Liam isn't walking or standing on his own yet and we are still working on his mastering sitting upright unsupported. However, the stander, mentioned in the last post, has worked wonders in strengthening the muscles that will help him to stand.

Initially during therapy, Liam's physical therapist would stand him up supported against a couch or ottoman and try to help him strengthen his leg muscles in that way, but Liam would just scream and cry. After three 15-minute sessions in the stander, we tried standing him up against the ottoman again and he instinctively pressed his heels into the ground and stood (with support) tall and proud as though this was what he was born to do. The stander has also helped him to enjoy his ExerSaucer more than ever, giving him more strength in his knees and ankles to bounce around.

Also, so as not to leave anything out, Liam's arms and hands are still making good progress. He uses them more than ever to play with his toys and reach for things that catch his interest. Lately we've noticed him bending his elbows when he presses his hands against our arms. Where there's a will, there's a way!

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.

An Early Intervention

4 months old

While Liam was undergoing therapy in the hospital once a week, we were informed by one of his therapists of an Early Intervention program which provides therapeutic services to qualifying patients up to 3 years of age. After 3 years of age, therapy is provided at the child's daycare or school. You can also call your state's Department of Health and Hospitals to find out more about similar programs.

6 months old

8 weeks old

Liam now receives therapy three days a week: two days of physical therapy and one day of occupational therapy for 45 minutes each session. He responds very well to his therapeutic treatment and really enjoys it, though at times therapy can be very hard work for him. We are so grateful to his therapists for the amazing progress we are seeing through their work with him. It is their persistent hard work that minimizes the need for orthopedic intervention in Liam's treatment.

8 weeks old