A recent trip to Seattle Children's for Little Tito brought us peace of mind that he is doing well. Our time there began with a MRI. The scan indicated that the tumor behind the left eye has NOT grown. A sigh of relief. We got to see familiar faces who have cared for our son ever since the initial trip to Seattle Children's in September 2009. We saw the surgeons who performed the brain/skull surgery in April 2010. They continue to monitor a soft spot on Tito's forehead. Hopefully they won't have to close it with surgery. There is nothing to do at the moment.
The geneticist thought Tito looked great. Tito's motor delays have to due with poor coordination from the neurological effects of NF1, but he will catch up in his own time. A sigh of relief. We are staying the course with occupational therapy and physical therapy once a week and speech therapy twice a week. The only thing to do right now, say the geneticist and Tito's therapists, is to get an x-ray of Tito's legs to rule out bone defects since he prefers to tip toe and walk with his feet pointed in.
Moving forward, Tito's team of specialists at Seattle Children's will meet to discuss the future of Tito's left eye. We wait. A specialist at CHOP in Philadelphia wonders whether it is time to pull Tito's left eye and put in a prosthetic. The main goal? To make Tito look more 'normal.' Our family is not ready. Right now, we are taking the wise advise from, of all people, Lace's life-long dentist: "Let Tito be. He's been through enough. Just let him be the little boy he is for awhile." A sigh of relief. We can certainly do that.