Hands and Hips

Friday, we had a good visit to the University of IA with Sidney's hand surgeon and pediatric orthopedist. We are blessed to have access to the U of I's orthopedics clinic within an hour of our home. Sidney's hand surgeon said things haven't moved or shifted with growth. Great news! A persons hands don't stop growing until the age of 15, so checkups will be a normal part of our routine. She had a syndactyly reconstruction in January 2010. This means two of her three existing fingers were fused, and the surgeon separated them, allowing them to function independently. A skin graft is used in the separation of the digits. What remains is thick scar tissue between the fingers which might cause her pinkie to tip further inward.

As the surgeon mentioned the possibility of another procedure, I felt a pang of guilt, thinking I could have done more with physical therapy to prevent scarring. Moms are never easy on themselves. Typically surgeons don't give a physical therapy order after syndactyly reconstruction. We wanted the best possible result. Our physical therapist used ultrasound, and we worked at home, rubbing Vitamin E oil into the scarred area. Then Tom reminded me, Sidney couldn’t tolerate the physical therapy. It made her miserable, unable to sleep with the splint, and she began showing signs of regression. Sidney was telling us, "you took me to the doctor 12 times last year at the University of Iowa. This doesn't include my pediatrician or the times I needed antibiotics for a cold. Stop messing with me!" It was also like sensory overload. Imagine having something together your whole life and suddenly separated. Then factor in someone rubbing it. It makes me wince, thinking about it.

This apprehension has some positive value. It makes Tom and I cautious about surgery. If things haven't shifted or changed, there is no reason to move forward with surgery. That's why we are keeping an eye on it.. I understand surgeons are talented professionals. But they are also anxious to cut and correct and perfect. I think our hand surgeon is finally on board with our objectives. This doesn't mean we won't do what's absolutely necessary for our girl. It just means there is a limit to how much we are willing to sacrifice, in order to achieve the surgeons vision of perfection. For all we know, the scar tissue could stay the same for the next five years. And this might not happen, and that's ok. But again, our goal is balance in her life.

Next, we were off to the pediatric orthopedist. He's responsible for monitoring her leg. If you are catching up, she is missing the fibula bone (fibular hemimelia) in her left leg, causing a limb difference. As she grows, this limb difference becomes more pronounced. Meaning, there is a 13% difference between legs. One leg is shorter and smaller than the other. With this particular special need comes concerns about stress on her spine and hips. Typically, the hip on the side with FH, isn't the same. Everything looks good. Her hip on the shorter side is developing well. For now, we have shoe shopping and an updated prescription for the lift to fill. And the difference between legs has increased with growth. Her lift will be over 3 cm. As long as she can maneuver, and believe me, she can maneuver, we will continue with a lift. Eventually, we will look into prosthetic devices. She will be older when this takes place. There is really no time table since we don't have a roadmap indicating her growth.

Her age makes treatment better and worse. Better because, we can tell her to hold still during the x ray, or we are only going to one more doctor, and you are done, and she cooperates. Luckily, the hospital does a phenomenal job of working with children. We should have some opinion about the quality of their work. I keep telling parents of limb affected children, the first year is tedious, sorting out the mysteries, getting the tests done to look at overall health and well being, but once you are done with the first year (at least in our situation), it's easy. Treatment has taken place, and what follows is checkups and tweaking, if necessary.

So for now, we are thankful to continue normal life. As normal as this family can be.