Hooked Up
November 30, 2005 12:00 AM

Here's a question I received: "I hope Juliana is doing well tonight. I think of her at night. You wrote that she doesn't usually go to sleep till midnight, and has 6 different things hooked up to her at night. Does she need that much during the day also? I was wondering what bothers her about going to sleep. Do you think her eyes being covered causes that, or all of these things she is hooked up to" Gail, Redford, MI.

Answer: Actually, it's 7 electrical outlets she needs at night. When Juliana gets into bed she wears a monitor belt around her chest, attached with velcro. This alarms if her heart rate or respirations are too high or too low. Also she receives cool mist from tubing attached to a humidifier. These are the only 2 things attached to her throughout the night. She doesn't need them when she's not sleeping. She has a stationary suction machine plugged in beside her bed, and a portable one that gets plugged in at night to recharge. She has a nebulizer machine for respiratory treatments as needed. She has a feeding pump which can run by battery but needs recharging at night. And. very important, the DVD player. That's the 7 machines she needs plugged in at night.

She's always had the monitor belt and the trach mask for humidity. They don't bother her—she expects them to be there. She's very routine oriented and will point to something if I forget to put it on! She doesn't get the plastic wrap over her eyes until after she goes to sleep. She doesn't even know she's got it on. She sleeps all night, once she goes to sleep. She doesn't even wake up during respiratory treatments or suctioning. The reason she stays up so late is just that she doesn't want to miss anything. There's a song, "Dance hall girl, dance all night" I used to sing to her, and call her "party girl".

When she first learned to stand up in her crib, I would have to lay her back down over and over again. I couldn't just let her walk around in the crib or she'd pull apart her tube feeding. Some nights I'd lay her back down 15 -20 times. As soon as she got her portable DVD player all that stopped. She loves watching her "Signing Time" DVDs, every night, over and over. She goes to bed with the DVD player every night, never tries to get out of the bed, never complains or fusses. Today's picture is of Juliana in bed with her DVD player. She's a wonderful little girl.

—Jeanne ("Party")

Tender Loving Care
November 25, 2005 12:00 AM

As we were making our way through the crowd of people at Disney World last month I noticed a little girl’s reaction to Juliana. As she glanced into the stroller, the girl’s face quickly went from puzzlement to sorrow. She looked so sad. I wanted to turn and run after her, to tell her, “Wait, don’t feel so sad. Juliana is a happy little girl”. Juliana doesn’t spend much time feeling sad. She’s just too busy having a good time.

Most nights Juliana is awake when I arrive at her home (about 10:15 PM). Right away I have to do things to her that make her cry. She really doesn’t like to have her face, mouth, or eyes touched, but I must give her mouth care and eye care. She has a lot of oral secretions but her tongue still gets dry because it protrudes from her mouth, so she gets a lubricant on her tongue. Then she gets eye ointments. She usually needs suctioning, and sometimes her trach needs changing. All this makes her cry (you can’t hear a child with a trach cry, but she’s crying). She resists mildly, twisting and turning her head away. Then we’re done. I gather her to me in a hug and she points to “our” big reclining chair. But she doesn’t just point. It’s point, point, point! We sit in the chair and she points at a book, not just a little point but an adamant point. Then she’s engrossed in the book

She has never held a grudge against me for anything I’ve had to do to her. She’s very forgiving! She doesn’t pout or sulk. Her attitude seems to be, “I’m glad that’s over, lets play”.

It’s been very busy at the Wetmore’s house over Thanksgiving, with lots of family visiting.

Juliana is well and having a ball.

—Jeanne ("Party")

Back Into the Light
November 19, 2005 12:00 AM

On Oct. __ Juliana was admitted to Miami Children's Hospital for a relatively new procedure, the application of BMP (Bone Morphogenic Protein) to certain areas inside her skull. The purpose was not to make a difference in her appearance now, but as preparation for future surgery. This substance is to promote bone growth, and its benefits will be realized further down the line as more facial reconstruction is done.

It was expected that she would have some swelling after this surgery, but we didn't realize how severe it would be. Juliana's whole head was swollen. Her eyes were swollen so tight that she couldn't see. It took two weeks for the swelling to go down enough for her to get her sight back. It was heartbreaking to see her like that. I can't imagine what she was thinking—she literally went to sleep and woke up blind! Yet she would feel our heads and give us a pat on the back, then she'd make the "sign" for "I love you".

She was discharged home before she got her sight back. I'd come in about her bedtime, and follow our same routine (Juliana loves routine). I'd sit her on my lap facing me and we'd turn the pages of her books and photo album, just like always, even though she couldn't see. Then I put her into her bed, and she'd reach to push the buttons on her feeding pump, just like always. She was comforted because things were where they were supposed to be, and she slept well.

Each day the swelling went down a little bit more. One night I went in and she turned and looked at me! If she held her head just right she could see. I was so happy for her. Now, she's back to normal, and as Tami said on www2.caringbridge.org/fl/juliana, she hasn't sat still since.

The picture I'm posting today is of Juliana sleeping with her "plastic wrap" mask on. After she goes to sleep I cover her eyes like this. She doesn't close her eyes tightly when she sleeps, and this keeps her corneas from drying out. It doesn't bother her at all—she doesn't even wake up. Juliana sleeps well all night, even through tube feedings, suctioning, and respiratory treatments. She's a wonderful little girl.

You can find her a photo of Juliana wearing her sleep mask in our picture pages.

—Jeanne ("Party")

Email Juliana!
November 17, 2005 12:00 AM

You can email Juliana Wetmore, care of Nurse Jeanne! Email arrowsmithwoman -at- yahoo.com Also, we’ll eventually have a message board here, but for now you can post questions to:

www2.caringbridge.org/fl/Juliana

And, another picture update for today!

—Jeanne ("Party")

Family Trip
November 15, 2005 12:00 AM

Note: These journal entries were written back in October during a family trip!. –ed.

10-6-05 Thurs. night 0630 I’m writing from the desk in room 4231 at the Disney Yacht Club Resort, Orlando, Florida. My roommate is Juliana. She’s asleep in the bed next to me, and I’m hoping she doesn’t wake up for a while. I’ve still got a lot of things to do. I’ve got a new camera phone and I haven’t read the directions yet. I want to be able to get some pictures to post and also some video clips. We checked in about 8PM last night, and Juliana went to sleep about 11:30. (Thom, Tami, and Kendra are in the next room.) It took quite a while to get all Juliana’s equipment set up in here. It’s taught me never to travel without a multiple outlet extension. Juliana has 6 necessary pieces of equipment that need plugging in.

10-9-05 Sun. night 11:30 This is our 4th and last night at Disney. It’s been great. At first Juliana was timid and afraid of the Disney characters, turning away and trying to hide. Now she waves at them. She was precious in “It’s A Small World”, waving and pointing during the whole ride, and on the “Magic Teacup” ,waving her arms in the air.

I’m so privileged to be part of this dear little girl’s life. She is so loving and giving. She has such “heart”. She radiates goodwill everywhere and to everyone. She restores my faith in humanity.

10-12-05 Wed. 0400 We attended a “Character Breakfast” on Mon. morning, which is really a brilliant concept. While breakfast is served a cast of Disney “characters” circulate throughout the room, stopping at each table, chatting and posing for pictures with the children. Kendra loved it. Juliana would point and wave, but as soon as a “character” came near she would try to hide. There are times when the fact that she’s non-vocal is a plus! She screams, you just don’t hear her.

Both girls were well behaved on the ride home, staying in their car seats without complaint. There’s a “drop-down’ DVD player that keeps them entertained. Their favorite DVD’s to travel with are Shrek I and II and Monsters, Inc. The car seats have to be separated though, or Juliana pulls her sister’s hair, etc. It’s hard for Juliana to sit still without doing something.

We had a wonderful time at Disney and plan to go back, perhaps in January.

—Jeanne ("Party")

Hi, I'm Juliana's Nurse
November 14, 2005 12:00 AM

I'm Jeanne, Juliana's nurse (and secretary!). I've been her nurse since she came home from the hospital at 3 weeks old, working at night so she'll be safe while her parents are sleeping. She has a tracheostomy, requiring suctioning to keep her airway free of secretions. She doesn't have a swallow reflex, so when her oral secretions build up they must be suctioned. She receives nebulizer treatments to prevent and relieve airway congestion. She has a Mic-Key feeding tube and gets two feedings during the night. She also gets medications through the feeding tube. Her left eye doesn't blink and her right one seldom does, so she gets frequent applications of eye ointments. When she's asleep her eyes must be covered with plastic wrap to prevent her corneas from drying out. She's always resisted going to sleep and is usually awake until almost midnight. Once she's asleep she sleeps all night, even through the treatments and procedures. She's usually still asleep when I leave in the morning, but if she does wake up before I go she makes the "sign" for "all done", and is ready for mischief.

This web site for Juliana is under construction. Please check back for updates. Also, check www2.caringbridge/fl/juliana. Thanks, and please continue to be patient. We know many people are eager to learn more about Juliana.

—Jeanne ("Party")