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

Technical Issue

I'm aware there is an issue with leaving comments. Try leaving comments as "Anonymous." That seems to be the only way it will work. I have changed some settings so that comments will show. This is apparently a bug that is being worked on.

Benefits of Therapy

When he was just two days old in the NICU, Liam received his first therapy session. The therapist worked very carefully on his tiny, yet exceptionally tight, hands and arms while teaching my husband and me the importance of spending 5 minutes several times a day giving his arms and hands very gentle therapy. She instructed us that it was best to perform these little sessions during feedings so that he was distracted from any discomfort he may experience. He could not move his own arms and shoulders at all. His fingers did not open from their tight fist position. When we tried stretching his arms at the shoulder joint, they would barely lift more than 15 degrees away from his body. Because of therapy, both through our efforts and through the efforts of professional therapists, Liam has come a long way in these 6 months.

Routine therapy has taught Liam how to play independently and has taught us as his parents how to play with him so that his joints may continue to loosen. In my last post, I uploaded a short video of Liam playing with a spoon. None of my family, even my husband, had seen him do that before I posted it to this blog. That is an example of the multitude of daily victories we are rewarded through persistence. Liam is so motivated by his therapy sessions that he spends the rest of the day trying to accomplish a new obstacle he was shown. We reward him by cheering him on, showing him how thrilled we are with each new development. He is an amazing child.

A Modified Approach

Modified belly time

In addition to the serial castings that Liam receives in effort to increase mobility in the joints of his legs, he must also receive aggressive therapy not only to work the joints in his upper extremities, but also to help him reach major milestones that are expected of all infants his age. His joint restrictions make meeting certain milestones more difficult, such as the ever important belly time.

We have had to make several modifications to help him achieve such milestones and while he may not entirely achieve them in the average time window of most infants, his milestones are certainly emerging through the efforts in his therapy sessions. Because of the joint restrictions in his arms, Liam cannot raise his arms over his head or even very far out to the sides of his body (such as in a wingspan motion). But one thing I have learned on our journey so far is that if a baby wants to do something (and Liam is no exception), then that baby will do it. Even though I don't need reminding that he is a normal baby, he does seem determined to remind us that he is just as motivated to learn to function as though there are no restrictions to his movement. In short, Liam is driven to succeed, no matter the obstacle.

Below is a video demonstrating the restrictions in the joints of Liam's arms. He cannot bend his elbows as the tendons are so short, they do not bend at all.

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

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