Tuesday, October 25, 2011

What is one eye worth: To save or pull?

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.

3 comments:

Transforming Seminarian said...

What an awful decision to have to make re: Baby Tito's eye! If I'm thankful for anything in that, it's that Tito Sr. has a unique (if not quite identical) perspective on such a choice.

Thanks, as always for the updates.

Lillight said...

Hi Lace,

My daughter Rachel's right eye is also affected by NF1. It is hardly seeing at all, and we have to use drops daily to control the glaucoma. I've wondered about removing it too but the doc prefers not to, since it isn't causing her any discomfort.

Unfortunately for her she has a tumour affecting her eyelid and right side of the face, so her appearance is more adversely affected and she is currently on weekly injections of Peg Intron to control the tumour growth.

Our kids are so close in age, mine was born May 2009, I really empathize and follow your blog with concern and love.

Take care,
Lucille in Singapore

Lace Marie Williams-Tinajero, Ph.D. in Theology said...

Thank you Mark and Lucille for your comments on the recent post. It is a comfort to know we are not alone in our journey with Little Tito's NF1. Lucille, thank you for sharing about your daughter Rachel. My heart resonates with yours as a mom of a child with NF1. I would like to be in touch with you. I'm writing a book on what it's been like and would be interested in hearing your story. The book is mainly on managing my fear as Tito's mom.