Early to Bed
January 31, 2006 12:00 AM

As you've probally noticed, the Caringbridge site is temporary closed. Don't worry and be patient. We know you want more infomation about Juliana. I'm posting two pictures today, so you can see how big she's getting. In the family photo, notice how nicely she's posing with her little hands folded in her lap. If you've e-mailed me and not received an answer, please try again. I accidently deleted two e-mails. I don't seem to have any way to retrieve them.

Juliana has recently, in the past month, started to go to sleep at a reasonable time. Now when I get there about 10:15 she's already in bed asleep. Sometimes she's still sleeping when I leave about 0740, but not always. Sometimes she's up ready to play. I can tell if she's starting to wake up, so I go over and take the plastic wrap off of her eyes. She sits up and waves at me, then points to the monitor wires which have to be disconnected. Then she practically bounds out of the bed.

I had an e-mail asking me if this isn't a boring job, since Juliana is asleep most of the time I'm there. You know, I don't mind being bored. I worked in critical care in one hospital for 18 years and on a telemetry unit in another for 4 years. I was really "burned out" with nursing, so I went to school to become a massage therapist. I worked at that for a year (2 jobs), and love giving massage.However, I found that about 10% of the male clients don't understand what a massage consists of ! Next I went to school to become a truck driver. I have a class A CDL and drove an 18 -wheeler all over the country for 6 months. Four winters ago I was driving for Werner in a blizzard in Spokana, WA., with no CB, no cell phone, and no GPS. (And no money!)

There's a long story (next time) about how I got "lucky" and found Juliana. For now I'll just say I'm delighted to be sitting at Juliana's bedside each night with a stack of books and magazines, and Juliana's DVD player.

I'll post again soon with more information.

—Jeanne ("Party")

Juliana at Suppertime
January 17, 2006 12:00 AM

I’m posting two pictures today. One was taken just a couple of months ago. When it was taken the tubing in her nose had been recently changed. The other picture was taken on Christmas morning. You can see how far the tubing has worked itself forward. Dr. Wolff has seen pictures, and she’s being scheduled to go in and have the tubing changed. However, it’s very close to the time he wanted to do another jaw “distraction”, so he might do it all together. We’ll let you know when we know.

There have been some questions about Juliana’s meal times. Well, she has a feeding tube called a “MicKey”, which is like a “Tupperware” button in her abdomen. The formula goes into a plastic bag and the tubing just snaps into the button. The bag goes on a pump and the feeding takes approximately an hour. She gets the feedings at scheduled times, twice during the night on my time and twice during the day. The early one usually is given while Tami is doing errands etc., so Juliana is in her car seat or stroller for that one. Sometimes the next one is given as a bolus whish goes in quicker, or sometimes the feeding bag is placed in a back pack for Juliana to wear around. There’s no way to keep her still for an hour feeding, if she’s awake.

When the Wetmore’s actually sit down at the table for a meal Juliana joins in, sometimes actually putting some food in her mouth, then taking it out. She doesn’t have any swallow reflex. She’s quite puzzled as to why people are always putting food into their mouths. She doesn’t see any benefit to it. But she gives it a try once in a while. She also likes to take a capped soda or water bottle and tip it up to her mouth, trying to figure out what that’s all about.

Tami and I were discussing the scene in “The Miracle Worker” where little Patty Duke wrecks havoc at the dinner table, going from plate to plate disrupting the whole meal. Tami said, “That’s Juliana!”! But no, no, no, it’s not like that. Juliana does like to go around the table, sitting on various people’s laps, but she pays attention to what’s going on and tries to make sense out of it. She tries to get some food on a spoon, etc. Her favorite thing is to have a cup with some ice cubes in it and a spoon.

We don’t know if and when she’ll be able to swallow and eat. They’ve worked with her quite a bit at speech therapy, getting her used to different textures in her mouth. She still resists mouth care and having her mouth touched. She’ll fight having a “toothette” put into her mouth, but if you hand it to her, she’ll do it herself. No matter how noxious the procedure is to her, she wants to do it herself!

Here’s another clarification—about her breathing. The trach isn’t so she can breath, it’s to keep her tongue from blocking off her airway—then she wouldn’t be able to breath! When she has enough surgery there will be more room in her mouth for her tongue. There’s another of those surgeries coming up in a month or so. It’s called a “distraction”. She’ll have pins in her jaw again. We’ll be very happy when they come out. (The long thick blue tubing seen in some of the pictures is just a humidifier.)

This next section isn’t about Juliana, but it is about something I get asked a lot. Kerrie B. posted a question for me on caring bridge—“What is the significiance of your screen name arrowsmithwoman?" She has no idea what an assignment she placed before me. First, I’ve had to reread a large portion of a book by the Eastern philosopher Osho titled “Discourse on the Royal Song of Saraha”. Now I’ll try to paraphrase that complex symbolic saga.

It happened a long time ago. There was a young man named Saraha, the youngest and most favored of five brothers. They were raised as scholars in the King’s court. Saraha became famous for his knowledge and the King hoped for a marriage between Saraha and his own daughter. Instead, Saraha shocked everyone, renounced everything, and became a monk. Even worse, he chose a different religion to become a monk in. However, he persevered and over the years regained fame, this time as a follower of and spokesman for his new faith.

But then he had a vision—there was a woman in the marketplace who was to become his real teacher, the marketplace being symbolic for “the thick of life”. So now he renounced his religious teacher saying, “You have done half the work, you have cleaned my slate. Now I’m ready to do the other half”. He went to the market place and found the woman he had seen in his vision. She was making an arrow, an arrowsmith woman. (There’s a lot of symbolism here but I’ll just skip all that.) He watched this woman raise her bow, with one eye closed and one eye open, aiming at an invisible target, and he had an epiphany. She was not looking to the right or to the left, just in the middle. He suddenly understood the wisdom of “the middle way”, avoiding excess and focusing on the present moment. He goes off with the arrow smith woman, to be blissfully happy.

There’s more, but that’s enough. I read this story about 15 years ago. It wasn’t that I saw myself as the arrowsmith woman. I was “in love” with a man I saw as Saraha, and I wanted him to see me as the arrowsmith woman. He didn’t. So you see, it has nothing to do with the rock band Aerosmith.

I’ve tried to change this screen name to a different one, but have failed to figure out how to do it. I think I have to just close the account and open a new one. So far it’s been more effort than it’s worth. Yahoo already has a nursejeanne and a nursejean. I’m thinking I’ll change to nurse4juliana. I’ll keep you posted.

—Jeanne ("Party")

Signing for a Change
January 04, 2006 12:00 AM

I'm posting two pictures today. The quality of these pictures are not as good as I'd like, but at least you can see how Juliana's growing and get a "feel" of what she's like. She looks so cuddly in some of the pictures, you just want to squeeze her! In the picture labeled Bouncing she's on her little trampoline, holding onto the safety bars. The dog, Shelby, is behind her, looking through the sliding glass door.

Last night when I went in, Juliana was already in bed sleeping. She'd been sleeping since her 6PM feeding. "Oh", I thought, "She'll be waking up early in the morning". It was early all right—0130! She was awake from one thirty until four thirty. Since she was wide awake I got her up for a while and we played, colored, looked at her photo album, read books, and rocked. When I'd point to her bed she'd point to another book, but finally I put her back in, with her DVD player of course. She'd watch one "Signing Time" video and when it was over she'd sit up and sign "change". After 3 or 4 videos she went back to sleep, and was sleeping when I left. Usually Juliana's awake when I get there (her mom says she waits up for me), we play a while, then she goes to sleep and sleeps all night, not even waking up during her respiratory treatments.

I'm not sure exactly how old Juliana was the first time I realized she was interacting with me in a meaningful way. She was quite young, only a few months old, and I was getting her dressed. I had given her trach and mouth care, and she was crying. I was pulling her shirt on over her head when I realized she was trying to get her arms into the sleaves. She was upset and crying, but she wanted to help herself get dressed. That's just how she is now. She wants to help, no matter if she's upset, or in pain, or crying. Sometimes when she's asleep her diaper will need changing. She'll be sound asleep, but she'll raise up her little butt—helping. It makes me want to just hug her. Instead of having an attitude of "leave me alone", she tries to help. What a nice little girl!

—Jeanne ("Party")