Wednesday, September 15, 2010

Tito has come along way

Another mother, with a 16 year old daughter with NF1, told me that the future will hold many interesting moments as Tito lives with NF1. That was back in April, the day that Tito was discharged after his brain/skull surgery. At that time, little did we know that Tito would have two more surgeries in less than five months--both for his left eye. I keep returning to that mother's words.

The most recent surgery was last Thursday, September 9. An eyelid plastic surgeon sewed Tito's eyelids shut half-way. Tito's cornea still has a ways to go for healing. Back in June, at Seattle Children's, Tito had a silicon/thread device sewed to his left lids to heal the cornea. This allowed us to open and close the eye as needed. After three months, the cornea was looking really good--less scarred and cloudy. A couple of weeks ago, the lids looked infected, and the silicon device was removed. Within a week, the cornea had deteriorated with scarring again. So back to the operating room he went, very happily I might add, thanks to the Versed.

We are starting over with trying to heal the cornea. We are hopeful that this latest procedure, though long-term, will be the right fix. Tito is in good hands with Dr. Michels in Spokane. We are grateful for all medical personnel who have helped Tito.

Due to Lace's book about to be published through Brill, in time for a November conference in Atlanta, blogging has taken a back seat. Read Lace's latest posts on topics ranging from her book to being a mom and managing one's own anger at