Sunday, February 3, 2013

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

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