Hand Surgery Check Up
Nathaniel saw the hand surgeon today. It has been almost a year since surgery to rotate his right thumb and six months since our last check up. The surgeon is very happy with the placement of the thumb and Nathaniel's ability to do the pincher grasp with the right hand now, something he was not able to do prior to surgery. Nathaniel's right hand will probably not be his dominate hand; we expected that. But surgery has created a very useful support hand.
We have been working on hand strength for months in occupational therapy. Nathaniel struggles to pull up his pants or separate pop beads. The right thumb, while in a good position now, lacks normal muscle structure. Surgery included splicing a muscle on the pinky side of the hand and bringing it over to the thumb to increase muscle support. Nathaniel has a curled pinky finger as a result of relocating the muscle.
Years ago, I took Peter to this same hand surgeon specifically to straighten a pinky finger that had been broken during a football game and did not heal properly. After months of trying to resolve the issue in therapy, the doctor corrected Peter's finger surgically.
Ironic in a way. With one son the goal was a straight pinky. With another son, we accept a curled pinky. The benefit to the thumb demanded the muscle transfer; we consent to damaging the pinky finger. "My work is probably done," the surgeon said, "Continue to follow with OT and I will see you in a year."
It is nice to move another doctor to the "see you in a year" column. I am very pleased with Nathaniel's new abilities with his thumb. But as a mom, I am not one hundred percent in love with these outcomes. I wanted a working thumb and a straight pinky. On the same hand. This frustration of having to pick goes further. I wanted a safe airway and the ability to talk. The typical "You can be anything you want to be... You can do anything you set your mind to...." parent to child encouragement is not possible here, and the sting of that reality is harsh. My other children have struggles and weaknesses that limit their options in life. But none as obvious as Nathaniel's. When I wrote last about hand surgery, I mentioned that Nathaniel's greatest disability was other people's low expectations, and I still believe that to be true. But there is a delicate balance in special needs parenting between hope and reality. Living with hope is believing that Nathaniel will maximize the potential he has; living in reality is recognizing the disabilities he will have to overcome. I am reminded of sailing on Lake Erie when a strong wind blew from the shore. Reality kept the sail trimmed, aware that the return to land would be difficult. Hope released the rope and let the wind fill the sail to capacity. There is a constant navigating between these two - hope and reality.
The hand muscles in Nathaniel's left hand are a little better than his right hand, but not what is expected for a three-year old. We string beads, work with therapy putty, screw lids on and off, and other such work daily. We sing the ABC song and I demonstrate the hand alphabet, substituting "next time won't you sign with me" for the traditional "next time won't you sing with me." Nathaniel loves it and shows me his A and D hand signs over and over again. He works hard to do anything other than an index finger point. He does not have finger dexterity to hold up two or three fingers as a toddler would ordinary indicate his age. Sign language, where often finger position is the difference between one word and another, would be difficult for Nathaniel. Though it is frequently covered in bananas, semi dissolved Kix, and spilled formula these days, I am thankful God nudged me early towards using an iPad as his primary communication tool.
Next week we meet with Nathaniel's OT, weekly Speech therapist, and his Augmented Communication therapist for our quarterly two hour session. I am hoping my preparation for that meeting will become a blog post. An update on communication is long overdue.