Little Role Model
March 29, 2006 9:00 AM

Juliana had a great birthday, with lots of friends and lots of presents (it looked like Christmas morning for a while!). We didn't get a lot of pictures of the event, but I'm posting a couple just so you can see the big girl.

She had so much fun and got so "wound up"—when I came in at 10:30 (PM) she still hadn't settled down. Thom had brought her back downstairs just so she could see that all the people were gone. Then when she saw me, things were back to "our routine". She went right to bed, pointed to her DVD player, and was asleep before the 1st song was over.

She's so funny when she finally "surrenders" to sleep. She just throws herself back on the pillow with a sigh, as if saying "All right, all right!" and she's asleep. And she sleeps all night, right through any procedures (such as respiratory treatments, suctioning, tube feedings, and medications).

Well, tonight she's in Miami, awaiting surgery on Thurs. a.m. It's a major surgery. The "Cranio-facial Team" has changed their plan. We were expecting another jaw distraction, which she's had before, and we were familiar with. But they've decided to do something different. They're going to remove some rib bone and form her jaw (my understanding at present—I'll keep you informed). This is a good thing, but scary.

People have asked how much Juliana understands about all this and if she's apprehensive. There's really no way to tell her or to prepare her. We won't know until she wakes up how much swelling she'll have. Last time she was blind (eyes swollen shut) for several weeks. We have a picture of her with her head very swollen and her eyes swollen shut, and she's signing "I love you". What heart! She's such a role model! You know anything swollen is painful—yet she doesn't turn into a brat (or an obnoxious patient, like I would). For one thing, she's never left alone. When she wakes up, she can reach and feel—someone is always there, and that comforts her. Hopefully she won't have as much swelling this time.

I know many people are praying. I'll do better about posting any news.

—Jeanne ("Party")