Empresses
June 29, 2006 2:00 PM

Here's two more pictures, one of Empress Juliana and one of Fireman Kendra. I started calling Juliana "The Empress" about a year ago after I watched the movie "The Last Emperor". In that movie, Pu Yi, a child of 3, actually ascended the throne in the last years of China's Ching Dynasty. The little boy had the run of the palace and with servants to meet his every wish he soon felt entitled to have whatever he wanted. Juliana doesn't get everything she wants, but she does have a sense of entitlement. This is a good thing!

Wherever she is, she feels entitled to be there. If she's interested in what's going on, she'll get right in the middle of it. I don't remember ever being like that—having the confidence to walk right up and join right in. She's not bashful or shy, and I'm glad. She's still too young to get her feelings hurt, but this child will not be held back—she'll do just fine! Lots of people ask for more information about Kendra. She's a wonderful big sister, protective of Juliana, and not jealous at all (as I was of my brother when I was her age). She loves sports, and wants to be a fireman. She's not at all interested in dolls (except her Buzz Lightyear doll). She loves the characters from Toy Story. I've been taking care of Juliana for 3 years now, and Kendra is just now starting to interact with me. In the beginning she would come into the room, look around, and tell me, "I'm checking on my sister". Once I overheard her telling her mom, "Jeanne doesn't live here". I assumed she felt like I was an interloper in her home, and haven't tried to "make her like me". I'm just here, for Juliana, and because I've been consistently here, I don't think she sees me as an interloper any more. And, actually, since I've been here 7 nights a week for quite a long time, I kind of do live here!

We're leaving tomorrow (Fri.) for Illinois, and it's absolutely amazing that we have a flight. One of "Juliana's Army", Monique from Park City, Utah, got in touch with a friend of hers who lives in this area, and he flies his own plane. She put him in touch with Tami, and he's going to fly us, both ways. This is wonderful! I was dreading the drive. I know a lot of people were praying over this situation. Juliana must be one of the most prayed for people in the world, and I'm glad to be part of "the Empress's" entourage.

—Jeanne ("Party")

Always Ready for a Hug
June 20, 2006 3:38 PM

Kristi from Abilene Texas e-mailed me with some questions. She was observant enough to notice that Juliana's trach doesn't always look the same. Sometimes it's white, sometimes it's blue, and sometimes it's green. Sometimes you can see the little opening and sometimes you can't.

Here's why—the trach itself is white, and it's like a tube. Sometimes we put a blue "trach guard" on the end of it. This is a safety feature to prevent anything from getting into the trach or occluding it. When it's green, we've placed a "thermo-vent" onto the end of it which helps with filtering and humidifying the air she's breathing in. When she's asleep she has a trach guard on and the air is humidified through the thick blue tubing you see in some of the pictures, with the use of a "trach mask" which fits loosely over her trach. Sometimes during the day the thermo-vent will come off, or she'll take it off, and she'll be fine. If she gets "dry" we can put another thermo-vent on her or give her some humidity. If she's having a lot of congestion or is wheezing she can have a respiratory treatment, but she seldom needs one anymore.

Kristi also asked how Juliana's care has changed as she's gotten older. Mainly, she's more of a "well" child. The first year she often ended up in the hospital because every cold would progress to a respiratory tract infection. Now when she gets a cold, it's over in a few days, just like with any other kid. She's not a sickly child. She's a well child who happens to have a trach and a feeding tube, and a few other problems which she deals with quite well.

Her latest "new" thing to do on my time is to change the disk in the DVD. Up until now she has been content to pick out the disk and let me put it in the machine. Now she's learned how to do it, except that she's rough with the disk, sometimes forcing it into place. Hopefully her technique and skill will develop before she ruins any disks. She enjoys changing the disk so much that often she wants to change the it as soon as she puts it in. I'll let her put a few disks in and out, but soon I pick one I know she likes, put it in, and put the rest away. She gets so mad at me, pointing to the drawer with the disks in it. I sign "no" and lay her down, but she's not ready for that yet. She's right back up, but now she'll ignore me, keeping her little face glued to the screen, refusing to be distracted. After a few minutes, when she's good and ready, she lays herself down and pulls her blanket up. The power play is over for now.

Sometimes it seems to me that I'm always telling Juliana "no". I come in and put her into bed, and tell her no, no, no. Yet she is always happy to see me. Once many years ago I did a favor for my best friend and picked up her son for her at his day care. I walked in to get him and as soon as he saw me he ran the other way! That's what I would expect Juliana to do. Instead she runs to me, and hugs me! What a wonderful little girl.

—Jeanne ("Party")

Little Diva
June 06, 2006 5:05 PM

Hi everyone, I’m not posting any pictures today because I’m writing this on my laptop and my pictures are in my desktop, which crashed yesterday as soon as I had written a nice long update (but before I sent it). Now I have to try to remember what I wrote and rewrite it. Darn.

On Saturday, June 3rd, the Chrome Divas of Jacksonville Beach, FL. held the 2nd Annual Juliana Wetmore 100 Mile Benefit Poker Run. This is an event in which each motorcyclist pays an entry fee to join the caravan of bikes, stopping at designated sponsor sites along the route to pick up a card. There are various prizes awarded at the end of the run, for example, for the “best hand” and the “worst hand”. Also there are other drawings and raffles. This year the event attracted 238 riders from near and far – double that of last year. Thom (Juliana’s dad) rode his bike, after addressing the people assembled at the first “stop”. Juliana and her mom were waiting at the last “stop” to greet the riders as they came in. Juliana let everyone know she was the main attraction. Unfortunately, we did not obtain a single picture of her. Hopefully some of the “Divas” did and will have some posted on their web site – Chrome Divas. Or if anyone reading this happened to be there and got any pictures of Juliana, please send or e-mail them to me and I’ll post them. The film crew was there, so probably some of the event will be shown in the next documentary, due sometime this summer.

Tonight when I came in, at 10:30, Juliana was running around the house with her sister Kendra's rubber boots on. They were too big, of course, and on the wrong feet, so she was having trouble keeping her balance. She fell on her butt as I walked by and I "signed" silly at her. I made myself some coffee, loaded up my stuff, and started up the stairs. (I feel like a pack-animal getting my stuff upstairs, trying to get it all in one trip.) Juliana clamored ahead of me on all fours and jumped up and down when she got to the top. She ran into her room, pointed at "my" chair, and when I sat down she climbed up on my lap. Just for a moment though, as part of our routine. We looked at a few pages of a book, then she was off to pick out her DVD disk. She was ready for bed. She's usually asleep within a few minutes after I put her into bed. But if she's put to bed before I get there, she's almost always still awake waiting for me when I come in. My shift starts at 11, but I usually get there by 10:15, so the little darling can go to sleep. I would come earlier, but I'm sleeping so good when my clock goes off at 9:30. I just can't get up any earlier! But I'll work out a schedule with Tami so I'll come in early some of the time while Thom's gone. We can do it!

—Jeanne ("Party")