Growing Into Independence
August 06, 2010 6:40 AM

Here's a short note to let you know Juiana is having a great summer. As I'm writing she is with her mom, grandmother, and siblings at a family reunion being held in Arkansas, where family members from all over the country gather yearly at a resort deep in the woods, stay in cabins, cook out, eat, swim, walk the trails, and generally enjoy each other's company. I went with them one year when Juliana was younger and needed more nursing care.

She doesn't need me so much now. I'm just so glad she still wants me. After all, she's 7 years old and incredibly independent. But when I get there in the evening at 9, she hops up from whatever she's doing, gives me a hug, and, without complaining, comes upstairs to her room with me.

She loves the routine of getting my basket out of the closet and setting out the supplies I use during the night. She likes to get the cans of tube feeding and line them up on her headboard, then open the feeding bag and hook it up to the pump. These are activities that could be looked upon as chores, but she loves to be involved in her own care. She never complains when I put the monitor belt around her chest, and reminds me if I forget to turn her humidifier on.

Once she's in the bed, that's it. She might watch her DVD for a while, or look at a book, but she never finds an excuse to get out of bed. She puts her head down and goes to sleep.

What a dear little girl!

—Jeanne ("Party")

Always Learning
June 19, 2010 12:30 PM

Here's a recent picture of Juliana. She still has more surgery coming up, but as you can see, the present work is focusing on building and shaping her cheeks. In case there is anyone "new" viewing these pictures, Juliana has come a very long way in her 7 years. She is a wonderful, happy child. She's always been self-confident and outgoing, winning people over with her friendly personality.

When I was a child I was very overweight, was teased daily by other kids, and was very shy and bashful. I've dreaded the day when Juliana would feel the hurt of ridicule and rejection, but so far, although realizing her differences, she takes it all in stride, and remains "just another kid" (as Kendra once said).

Juliana loves music, and loves to dance and sing. Presently, her mouth is too tight to allow her to clearly enunciate her words, but it is possible to understand her speech. Usually she uses a mixture of talking and signing. She loves school. And she likes to be helpful:

When I arrive in the evening she wants to help me set up my supplies, getting out whatever scissors, tape, bandages, feeding tubes, etc. I might need. She always wants to participate in her own care, helping to place the monitor belt, the humidifier mask, and the feeding tube. She likes to pour the can of tube feeding into the feeding bag. She can snap the hearing processors on and off of the implants. She even likes to help when her trach needs changing out, counting to three and then easing the old one out for me to place the new one in.

Once when I was a new nurse working in a hospital I had a young woman patient who had been very ill for most of her life. She had many treatments and procedures to do and I was intimidated, afraid she could tell I wasn't confident about providing her care. She turned out to be totally knowledgeable about her own requirements and graciously taught me what to do to care for her. She knew belittling my knowledge and skill would not be helpful to her, and she taught me a lot.

I imagine Juliana would behave the same way in a similar situation. I am always learning from her.

—Jeanne ("Party")

Post-Op Care … And Hair
May 17, 2010 7:50 AM

On Thursday, May 6th, Juliana had her latest surgery, and she was back in her own bed the next night! She had three procedures done, a revision of her left Baha hearing aide implant, a revision of the scar tissue on her right shoulder, and a procedure called "debulking," which is a step in the process of forming the cheeks on her face. Despite incisions, suture lines, facial swelling, and the accompanying soreness, she's relieved and glad to be home.

The first night or so she's very "guarded," resisting touch, and just wanted to be left alone, as any of us would be. At this point most of her wound care is done while she's sleeping.

Now it's ten days post-op. Juliana likes to participate in her "evening care." She'll put some foaming soap on a gauze pad and cleanse along the incision lines (which are mostly healed now), then spread on a bit of ointment. She's still very protective of her left Baha hearing aide implant, so I take care of that one when she's asleep.

She's been staying home from school while her incisions heal. Because she doesn't have to get up so early in the morning, she gets to watch a DVD before she goes to sleep. Her current favorite is the Chipmunk sequel with the Chipettes. She doesn't want to lay down until the Chipettes dance, so she can dance along with them. She loves to dance, and will be taking tap and ballet this summer.

Also coming this summer is something I have lobbied long and hard for—a haircut! Everyone loves Juliana's long hair. I'll just say that shampooing and combing her long hair has not been easy. Just recently she's become very cooperative, and actually helps with rinsing the shampoo out. But now she has decided she'd like a haircut.

As it turns out, there is going to be an event for "Locks of Love," on July 18th, at the Orange Park Mall, called "Kutting for Kids." "Locks of Love" accepts donations of hair to make wigs for cancer patients, etc. Their web site is www.locksoflove.org. I expect First Coast News will broadcast Juliana's haircut as it will help a good cause.

We'll post a new picture of Juliana when her swelling goes down. By the way, Juliana's new sister Danica settled right in and is happy as can be. Although the same age as Juliana, she's very small and dainty, and has acquired the nickname "Tinkerbell" or "Tink."

—Jeanne ("Party")

And Then There Were Five
March 13, 2010 9:00 AM

Juliana's birthday was March 3. She's seven years old—amazing! I told Tami it was my birthday, too, since I've been with Juliana seven years now, but actually Juliana was 3 weeks old when I first took care of her. I remember that night very well. The agency had tried to "warn" me. "Jeanne, this is not a pretty baby," I was told, "but I know you can find love anywhere."

Over the next few nights I looked and looked, trying to find some "cuteness" in the baby's face. She broke my heart, crying with gastric distress. She soon was prescribed medication which helped tremendously, but in the meantime she cried, and yes, a child with a trach can still cry (just without all the noise!). That's when I finally "saw" Juliana. Looking into her one good eye as her pain eased and she fell asleep, I "saw" her—dear sweet Juliana. And she remains a dear sweet little girl, despite all she's been through.

A lot has changed for Juliana this past year. She has three more sisters! It used to be Juliana and her big sister Kendra. Then there started to be talk of a sister far away in the Ukraine. The "wallpaper" on the computer screen showed a bashful little girl in a red dress with mild Treacher Collins facial features, which Juliana would look at and sign "my sister."

But as the complicated adoption process dragged on, an unexpected situation presented itself. Two little girls of a distant relative (ages 1 and 3) needed a home. The Wetmores accepted responsibility and obtained custody, still determined to bring home the child from the Ukraine. It was more complicated and difficult than they imagined, but they did it. Now there are five girls!—Kendra, Juliana, Danica, Keira, and Allie. You can go to FirstCoastNews.com, do a search for Juliana Wetmore, and watch the short news segments about Juliana and her family.

I haven't posted any recent pictures of Juliana because she is between procedures and the "work" on her face is uneven. Work is done on one side, and after that heals the other side is worked on. We who see her every day think she is adorable, but people do stare at her, not understanding how far she has come and that she is a "work in process." However, you can see Juliana in the news segments, and her personality shines through. As Kendra said once long ago, "She's just another kid."

—Jeanne ("Party")

A Wave and a Smile
December 14, 2009 8:00 PM

Since my last update Juliana has had several surgical procedures, and will have another one in a month or so. Each procedure is but a step in the direction of Dr. Wolf's goal, and our goal, of providing Juliana with a functional face that doesn't hinder her in presenting the wonderful person she is to the world.

Actually, Juliana's level of self-esteem and self-confidence is so high, she has never held herself back from anything. She has refused to be hindered despite ongoing challenges. She greets the world with a wave of her hand and an exuberant friendliness, expecting a similar response.

She's been through so much physical pain, I couldn't bear for her also to be hurt by human meanness. There's an incredible amount of it out there directed at her, but so far it hasn't touched her. She's very special and very loved, and she feels special and loved.

Here's some great news: Juliana now has "normal" hearing thanks to the wonderful Cochlear Baha Sound Conduction System. She actually has a small titanium implant in her skull above each ear with an abutment into which the "sound conductor" (hearing aid) snaps. The titanium implant integrates with her skull (through a process called osseointegration) which allows sound to be conducted via her skull directly to her cochleas. This allows her to hear normally. Absolutely wonderful! The sound conductors are about the size of the tip of your thumb, and are unnoticeable under her hair. They are snapped off at night and back on in the morning. Her previous hearing aids were held against her head by a head band. Sometimes they made a good connection with her head and sometimes they didn't. With these, the connection is always good. She loves them.

Juliana is almost 7 years old now—a great age for enjoying Christmas. She loves the Christmas tree and the lights on the house. She doesn't have a big list of things she wants. She's more interested in doing the giving part. She continues to be just a nice little girl.

—Jeanne ("Party")

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")

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")