Hi all –

 

We traveled to Nashville on Monday and Tuesday so Harper could see a pediatric dermatologist and a pediatric neuro-ophthalmologist. Both of these appointments were in reference to her birthmark and the possibility of an eye disorder/malformation due to nevous sebaceous syndrome. Overall, we received a very good report from the docs.

 

We got a great report from the neuro-ophthalmologist. We saw him because nevus sebaceous is sometimes an indicator of significant neurological problems, and with the spina bifida an already obvious neurological problem, we wanted to be sure we weren’t missing anything. He said she looked great, though, with no indicators of anything else wrong. He also checked the optic nerves to see if the hydrocephalus had done anything, but we got a good report there, too. He was concerned about the nevus sebaceous on her eyelids, but he said the plastic surgeon would need to weigh in on that.

 

We got nothing terribly new from the pediatric dermatologist, though. She was on the fence about removing the nevus sebaceous now or waiting a few years. She, too, said it would ultimately be a call for a plastic surgeon.

 

So, that’s clearly our next step. Our insurance has selected Dr. Brantner in Johnson City as the surgeon, be we suspect he’s going to refer us to a pediatric specialist, most likely in Nashville. Then, we’re looking at a series of procedures. But there are still a lot of “ifs,” so we’ll talk to Dr. Brantner and plan from there.

 

Luckily, Harper is a great traveler. She made the drive without any problems and appeared to like staying in the hotel better than staying at our house – she was all smiles both days.

 

Thanks for the continuing thoughts and prayers.

 

Smiley girl.

Smiley girl.

Tired punkin!

Tired punkin!

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