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.

An Update

Liam is scheduled to have a second surgery to lengthen his Achilles tendons on Monday, February 25th. He will wear casts on both legs for 4-5 weeks straight without change. When they come off, he'll be in special boots with a Ponseti bar to help him maintain the ankle length while they continue to heal in that position.Your prayers and support, as always, are appreciated.

Super Baby

It's been a little hectic lately scheduling Liam's pre-op exams, surgery and yet still fit in therapy sessions. I will keep posting updates as they come.

First casts with new orthopedist

Road to Progress: Part Two

It's needless to say that new parenthood coupled with a rare congenital disease presents lots of learning opportunities. One of the things we have learned is the value of care providers that have experience with the special needs of your child. It was difficult for us in the beginning to find doctors and therapists that even knew how to spell arthrogryposis, let alone work with an infant who was born with it.

Result of 3 months serial casting (feet and legs formerly twisted inward)

Even before Liam was born, we were blessed to be acquainted with a pediatrician who had heard of the disease and knew exactly how to approach it: with aggressive therapy. And while the orthopedist that put casts on Liam's legs from the day he was born is one of the best in his field, this was his first arthrogrypotic patient. His method of serial casting and his procedure to Liam's Achilles tendons were indeed effective, but we knew Liam needed more to achieve the breakthrough he needed to be able to bend his knees and ankles (we were advised even aggressive therapy could not achieve this alone).

First nap on his belly

In the interim of changing orthopedists, Liam was able to enjoy a couple of months of freedom without casts on his legs, during which he got to enjoy real baths as opposed to sponge baths and even learned to sleep comfortably on his tummy (which is made difficult by the awkward positioning of casts on his legs). Now that he is in the care of an orthopedist with background specialty in joint disease, he is back in casts - this time made of hard plaster. Just as the former serial casting he had gone through before, these casts are changed once a week. As of today, he will have two more cast changes and sometime during the end of this month, will have another procedure to further release and stretch his Achilles tendons. His procedure will take place at NYU Langone Hospital for Joint Diseases, where patients with joint diseases from all over the world are treated.

Most recent cast change 1-31-13

First set of casts with new orthopedist

Road to Progress: Part One

12 days old (yes, that is a stain on his cast)

The very day he was born, Liam was outfitted with casts on both of his legs. The only joints not affected by arthrogryposis were his hips. He had no trouble (and still doesn't) kicking those legs all over the place. You'd better stay out of their way during diaper changes! The best thing about his mobile hips combined with casts on his legs, is that he now has a very strong mid-section.

10 weeks old - occupational therapy

Liam had his casts changed each week for the first 3 months of his life before he had his first procedure to his Achilles tendons. During this time, he had therapy once a week in the hospital to work on the joints in his arms and hands. He was even given tiny customized hand splints to continue giving his wrists a constant mild stretch.

11 weeks old - recovering from surgery

Liam continued to wear casts constantly for about another 4 weeks after his first surgery. He was able to enjoy a couple of months of freedom and we are back in casts again. But that story will be for another post.