Just Another Kid
February 16, 2009 8:00 PM

My apologies again, for not making timely entries in this journal. It gets more and more difficult to write from the viewpoint of Juliana's nurse. For long periods of time the nursing is quite routine. For most of my shift Juliana is asleep. While she's sleeping I give her eye care, mouth care, and trach care. She gets a tube feeding throughout the night, and is suctioned as needed. She may require a respiratory treatment. I bring her to the bathroom and back without even waking her up. I give a couple medications. And I'm there.

If she's recently had a surgery or procedure, there are more things to do. She often has incisions to care for, which is especially difficult when the suture lines are near her mouth. In between her surgeries she's basically a well child. Yet she still has a nurse at night, especially at night, because of her trach. We don't know how long she'll continue to need it.

I've received a few e-mails wondering why we haven't posted recent pictures (a new picture has now been posted). Well, you know, Juliana's facial reconstruction is not finished. It's a work in progress. Juliana has had over 30 surgeries, some of them complicated, some kind of minor. At first I expected, each time, to see a major improvement, but came to realize it's not like that. It's a long, slow process. Sometimes it's "two steps forward, one step back." Occasionally it has even been "one step forward, two steps back"! It's disappointing when it seems as if little progress is being made, but when Dr. Wolf explains his plans and strategy it's easier to bear.

Juliana doesn't have any cheekbones, and the skin over where her cheekbones should be is taut. In order for bone to be transplanted to that area, there needs to be enough skin, or cheek, to cover the bone. First the "cheek" must be formed, then there will be a place to put the cheekbone. It's being done one side at a time, which gives her a kind of lopsided look. She has a new cheek which looks too big and puffy. The next procedure will "debulk" it—as Tami wrote, "smooth it out." She's in the middle of having her left cheek formed, then the process will start over to form her right cheek, then the work can progress to her cheekbones. At each stage in the process there are possible complications, e.g., dehiscence, keloids, infection. Through it all Juliana is a loving, friendly, happy, creative, and playful little girl.

So far she has accepted the way she looks without making a problem of it. She has remarkable self-esteem and self-confidence. Once Juliana and Kendra were somewhere with other children around. One child was calling attention to Juliana and making rude comments. Kendra remarked to the group, "She's just another kid." She is that. And more.

—Jeanne ("Party")