Remarkable Progress
July 19, 2007 12:00 PM

Juliana's surgery was just over two weeks ago, when she had the "Rigid External Distraction" (RED) applied, and she was having remarkable results. Already her nose has moved into an optimal position and we don't have to turn the screws for that part of her face anymore.

A problem occurred with the mouthpiece on Monday. It appeared as if, when the screws were turned, the mouthpiece was moving downward but was not moving any part of her face along with it. The mouthpiece had visibly moved into a different position. Tami took some digital photos, e-mailed them to Dr. Wolf, and the next day they were on their way back to Miami. Juliana was taken into the OR yesterday to have the "headdress" adjusted, and I'm expecting them home tonight (Thursday).

Dr. Wolf is pleased with the progress made in just the two weeks since the new hardware was applied. We could see the changes taking place daily, as her nose moved forward and outward.

The device looks horrible, but really, Juliana doesn't mind it. She doesn't have any pain from wearing it. She never complains about it, or even picks at it. She's never tried to take it off, or even move it.

When she first got home, she looked at herself in the mirror, waved, and went about her business. On occasion when she has bumped into something with it, she laughs. It has not slowed her down at all. She even went bowling with it on, and had a great time. She remains amazing.

—Jeanne ("Party")

Juliana 101: Deal With It
July 03, 2007 8:40 AM

Juliana came home yesterday, Monday the 2nd. This is much sooner than expected.

She's doing great. She still has some swelling around her eyes but not enough to impair her vision, and she has new "hardware" which she's adapted to really well.

It hasn't even slowed her down. When I went in she was sitting in her bed watching the "Cars" DVD. She looked at me, threw her arms up in the air, pulled me to her, and gave me a hug!

When she sees me she makes the sign for "party"—kind of an "inside joke" because she likes to stay up late with me. So she made sure everyone had seen me, signed "party," and went back to watching her show. Soon she was asleep.

She had a great night, just like always. You'd never suspect she had just had a major surgery, and was adjusting to a strange metal contraption bolted to her head. If it were me, I expect I'd be fussing and whining to have it taken off.

She's a remarkable role model for how to deal with a problem—just do it, and do the best you can. She's a special little girl.

—Jeanne ("Party")