After seeing a great team, a great team, of doctors at UAB we realized that we were in the right place. We were ready to throw in the towel on all of the other doctors and clinics here in Florida.

That is how good we feel about the team approach. All of the books and handouts and articles and web sites we read how important having a good team of doctors to guide your child's care through. At UAB we had that team...and they communicate between themselves rather consistently about the care of the patient.

Before we started going there we tried to assemble our own team, but everyone was working in other locations, other hospitals, perhaps with different missions. Yet at each clinic or location, the small group of eye care physicians spoke amongst their own team. Linking the same types of doctors together under one roof made a big difference and I think we felt more comfortable knowing that what we were doing was the right thing to do.

Sam's Eye

Sam's right eye is proptotic, meaning it protrudes outward a bit. His eye is also lower than his left eye so it is a down and out location relative to the socket and other eye.

We had believed that the tumor mass behind his eye, or on top of the orbit, was pushing his eye out and straining the optic nerve. I am sure this is happening at some level, but not at the level of danger we thought before (at the date of this writing, Sam had his debulking surgery and optic nerve photos were taken, we haven't heard back from the doctors). We learned that Sam had glaucoma. His internal eyeball pressures had always been monitored but it was experts who saw that Sam's eye was deformed by the pressures related to glaucoma.

In children (toddlers) glaucoma is not so easy to figure; toddlers have a hard time of telling someone that their eye hurts. Sam never really (ever) complained about his eye or eye care. Anyway, instead of being able to tell someone about a specific pain or pressure sensation, a toddler's eye may deform from the pressure. If that happens, the shape of the eye will/may not return to the correct shape. Sam had surgery to relieve the eye pressure back in 2006 or 2007. The surgery was a huge success and we have been told that we "are managing Sam's pressures effectively." Good news on that.

Sam's eye is not in the normal eye location and the reshaping of his eyeball leads it to appear further out than it is.

A deep side effect from NF1 is bone deformation. Sam is missing a shpenoid bone behind his right eye. That is a very fine bone which separates the eye from the brain. That is another issue we are aware of and the care for this condition isn't really expected until later in Sam's life, if he really needs it. We pay more attention to the masses, where they have grown, or tea stains that we never noticed before. The sphenoid may be replaced with a bone graft after his teen-related growth spurts; like wait until the bigger growth spurts are over, then do surgeries, etc.

I am constantly reminded about how good of a patient Sam really is. Even with us at home. He can be as difficult as any other 5 year old; not doing what he doesn't want to do, talking back a bit, whining. But when it comes to caring for that eye or discussing surgery/what we are going to do next, Sam is a stud. He listens. He sits still. He lets you poke and prod areas very close to his eye and won't flinch. He'll even come up with crazy stories while you're examining him.

Over the years he as grown from 18" tall to 36" plus tall. He's doubled his size in five years so that is one heck of a growth spurt. Shelley and I feel that we may have made it through an opportunistic period for plexiform growth, but we'll see.