All Things Medical

Sidney and I made the trip to the Univ of IA for her checkup of both her right hand and leg. Just to back up if you’re reading this the first time, Sidney is missing the fibula bone in the back of her left leg and has four toes on her foot. Her condition is called fibular hemimelia, and I’m printing it here, because I notice a lot of people hitting on my posts about the condition. She has a limb difference between both legs with the telltale sign of a fibular hemimelia patient, meaning she has an adorable dimple on her knee. Fibular hemimelia is a rare condition and even rarer for a girl. It’s most prevalent in males. Our geneticist feels her birth mom either had the measles or was exposed to a toxin. Both are a strong possibility, however I’m leaning towards a toxin.

Hanging out with my cousin Finn at Grandma Jean Jean's house for Thanksgiving.

Typically people with fibular hemimelia are  impacted in other areas of their body, meaning Sidney has three well-functioning fingers on each hand.  When she came home in 2009, two of her three fingers were fused on the right hand. Our hand surgeon did the delicate work of separating her fingers. This was accomplished with a skin graft off her hip. Her other hand was completed the following May with a separate condition caused by syndactyly, but I don’t want to confuse, so back to the right hand. Sometimes after surgery there is scar tissue buildup that needs to be revised. We tried to work with the scar tissue after the originally surgery to avoid this, however given the fact that she was in a lot of emotional turmoil first coming home, and what must have been an unbearable sensation on the newly separated fingers, she did not tolerate any type of therapy to work with the scar tissue. I’m not convinced it would have taken care of the scar tissue completely.

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Last April, she went in and had the scar tissue revised with another six weeks in a cast. This allowed her the summer to have her hands functioning well again before she started kindergarten. The separation still looks great. The doctor pinned her finger during the same procedure to attempt to correct the outside finger crooking inward. After the surgery it went almost immediately back to its normal position. Mother Nature tends to have her way. The doctor feels if she can tolerate wearing a brace this will work to avoid the finger bending. Scar tissue is not pliable and does not accommodate growth, so this is why we go for a checkup every six months.

Are you still with me? Then we were off to the orthopedist for a look at the leg. She is doing well with her lift and will continue to do so. Many people ask me if she will have this limb extended. My answer is no for a number of reasons not the least of which is a 50% chance of infection. We can’t chance infection. It’s already a miracle that her foot is in good condition. Her orthopedist has commented on more than one occasion it’s the best foot he’s ever seen with a patient that has fibular hemimelia. Typically patients with this condition have to have their foot amputated, because they do not have a fully formed foot. We are so thankful God gave her an awesome left foot. Besides, her four toed foot is completed adorable. Isn’t this how we become as parents of special needs children? We see things so differently.