Dance Party!
August 08, 2007 10:45 AM

Juliana has had her "headdress" (RED: Rigid External Distraction) on for a month now. We're finished with turning the screws and are just giving the bones time to "set" and fill in with new growth. Tami keeps Dr. Wolf updated with digital photos. We're expecting to hear from him any day now, then we'll find out what he plans to do next. We've had a difficult time with this procedure—not Juliana, but us! The device worked just like it was supposed to, and it really didn't bother Juliana at all. She didn't have any pain from it, and it didn't slow her down one bit. She ran around playing as usual, and if she happened to bump her hardware into something (or someone) she'd just laugh.

This procedure was difficult for us because it hadn't occurred to us that we might make her look worse before she ended up looking better. We just assumed each time she'd look a bit better, but this time it seemed to us that we were stretching her nose way too far outward. Tami and I were quite upset and didn't want to turn the screws anymore, but Thom drew us a diagram and explained Dr. Wolf's plan, how with the next couple of procedures he'll straighten out her jaw, and what with the new skin that's been created (by slowly stretching her nose downward and outward), he'll have a place to construct some cheekbones for her. So we have a better understanding, but it's still difficult to observe the daily changes in her facial structure.

Everyone's children grow and change, but it's a gradual process. It happens so slowly you hardly notice. But this month Juliana has looked different from one day to the next. Someone mentioned to Tami that "it must be bittersweet." We loved the Juliana we were used to—but Juliana is the same dear little girl, no matter how fast she changes before our eyes.

One of the photos I'm posting shows Juliana at her TV watching her current favorite DVD, The Cars. We watch it every night as she falls asleep. The other night I was thinking I'd like to put a different DVD on, so I changed it and put on The Wiggles Dance Party. That was an error on my part. She was dancing all over the bed, along with The Wiggles, so I said, "Okay," and got her out of bed "for a while." She followed along and danced to all 16 of the songs. She knew all the dances and did them all. Then, when that DVD was over, she was ready to get back into bed and watch The Cars. She watched about 20 minutes of it before she finally fell asleep.

She slept well, though, so I was glad. I do a lot to her while she's asleep—eye care, mouth care, and pin care. There are five bolts on each side of her head to keep clean and apply ointment to. There's a lot I can do while she's asleep that she won't let anyone do it when she's awake. I'll tell her about it someday.

—Jeanne ("Party")