Safe at Home
November 28, 2008 11:00 AM

Still no pictures for you! Juliana returned from Miami yesterday (Thanksgiving Day) with the black surgical dressing removed from around her mouth. However, it was replaced by a sutured-on white dressing, which looks like a pile of cotton balls stuck to her mouth. This will come off in about a week—then we'll see what her new skin graft looks like. Dr. Wolf has been working on the left side of her mouth. He'll start working on the right side on December 17. It seems like a slow process, but she has come a very long way from where she started.

Last night Juliana had a new DVD to watch as she went to sleep, a Barney Christmas DVD. She couldn't go to sleep, though, until she had danced along to all the little dances. Barney and the characters in the video use a lot of arm movements in their dances, and she quickily learns all the moves, which she does while sitting up in her bed! Not only that, but she wants me to do them too. She'll be watching the screen while at the same time keeping an eye on me to make sure I'm doing it right.

Usually on her first night back from the hospital it takes her quite a while to relax, and then she'll sleep lightly, pushing away my hands when I try to work on her. Last night she watched Barney and two Signing Time DVD's before she fell asleep, but she slept well and I was able to clean her suture lines without waking her up. When she sleeps well like that I know she's feeling safe, back in her home.

—Jeanne ("Party")

"Party" All the Time
November 25, 2008 4:30 PM

You may notice that my name is now signed "Jeanne (Party)" in this column. I have written about the name "Party" before, but I looked back and the last time it was mentioned was September 26, 2007.

It's Juliana's name for me. She's always referred to me as her party. She signs "my party," emphasizing the "my." It started when she was about a year old. She'd be fighting sleep and I'd lay her down again and again, singing an old Eddie Murphy song—"My girl wants to party all the time, party all the time." Sometimes Tami would stick her head in and say, "How's the party going?" When I'd get there in the evening Tami would say, "Juliana, your party's here." So that became my name.

One of the things that Juliana is able to say quite clearly is "Party, look!" I love to hear that. You might notice some of the letters in the Guest Book mention "Party," referring to me. I love that, too. I play with the spelling and sometimes spell it "Partie," but that's who I am, Juliana's party.

—Jeanne ("Party")

Brave Little Angel
November 25, 2008 7:30 AM

Sorry, no pictures yet. Juliana has a "surgical dressing" sutured around the left side of her mouth, which is black and looks like a handlebar mustache. It's temporary and will be removed today, as she goes back to Miami for another skin graft.

When I first saw it, before I realized what it was, I was shocked. I thought it was necrotic tissue, and that the skin flap had failed. But thankfully, that's not the case at all. The skin flap "took" very well, and her suture lines are healing. The area is sensitive and she doesn't allow much touching or cleansing of it, so a lot of that is done while she's asleep, but she's in a lot less discomfort than we were anticipating.

The main challenge has been securing her trach. Usually it's secured by a velcro tie around her neck, but because of the skin flap and sutures, we couldn't put anything around her neck that would constrict that area. The flanges of the trach were being taped—held down with duoderm and waterproof tape. Because of increased oral secretions and drooling, the tape often became loose.

Juliana needed constant supervision to make sure she didn't cough out her trach! Also, changing the loose tape was an ordeal, because her neck was becoming iritated. Finally her sutures had healed enough that we decided to try loosely applying a trach tie, just enough to secure the trach without putting pressure on the skin flap. Thank God, it works! Anyone who's had a dressing removed knows it pulls the little hairs on the skin and it hurts.

Juliana was breaking my heart: trying to be so good and let us remove the tape from her sensitive neck area, but unable to resist trying to get us to stop. I'm so glad we don't have to do that anymore. Next, when she returns from Miami, I'll let you know what's different.

—Jeanne ("Party")

Work and Rework
November 12, 2008 11:30 AM

Juliana had an extensive surgery on November 5, during which Dr. Wolf utilized tissue and skin produced by the "tissue expander" to work on her upper gum and lip area. This had to be revised yesterday, November 11. I was concerned that she had to go back to the OR so soon, but Tami reports that the revision is an improvement and that Juliana feels much better. If there are no further complications they should be home Friday. I can't wait to see her. I've really missed her. We'll post pictures when she gets home and settled.

—Jeanne ("Party")