Christmas With Juliana
December 27, 2005 12:00 AM

Here's a quick update to let you know how Juliana liked Christmas morning. The first thing she saw was the big playhouse. It's going outdoors, but her dad put it up in the livingroom so she could play in it Christmas morning. She loves that it has a door she can close. She always wants doors to be closed! I'm attaching a picture of it, and also one of her holding a ball. I chose this picture because it shows clearly that the tubes in her nose are working their way forward. Tami has taken some digital close-ups to e-mail to Dr. Wolfe to see if he wants to adjust the tubes. I'll let you know. So far he's said not to worry about it. His concern isn't so much what she looks like now but what she will eventually look like. I was upset before when it seemed like the tubes were twisting and tearing her little nostrils, esp. the left side. But he's not so concerned about what he knows he can correct when the time comes. The tubes prevent tissue way inside from growing over and occluding important passage ways. I've been asked about her inability to breath without the trach. The reason is her tongue has no place to go and therefore falls backward into her throat, occluding her airway. When she has further "distractions" to her jaw there will be more room for her tongue and it will lay in place inside her mouth. Then she probally won't need the trach anymore.

There really isn't a schedule as to how many surgeries she will have, and when. Dr. Wolfe has a plan, and is in consultation with many more experts. We just go day by day, enjoying this dear little girl each day. We know difficult times are coming, but we can't focus on what might happen. I know every night that I must do things to her that she really doesn't like. She hates the eye ointment, she doesn't like to be suctioned, etc. But when we're done with all that she's ready to hug and play. She just "gets on with it". She really teaches me how to "stay in the present moment". When she sees me come in at night she doesn't start dreading the procedures and trying to get away from me. She's always paying attention to "now". She's my little guru.

Well, now, about Christmas morning—she doesn't like unwraping presents. We couldn't get her to unwrap a present. And she doesn't much like presents either. She says most of them are silly (her favorite "sign"). She does prefer her old favorites instead of new things. She got a little trampoline with safety bars which she loves to jump on (picture of that next time).

This was meant to be a short update. I'm stopping now. I must go to bed. This month I've been working (if you can call it that) with Juliana seven nights a week. The agency doesn't have anyone to cover for me. They actually don't like me to get this much overtime, so they're not happy about it. But it's OK with me.

—Jeanne ("Party")

Juliana's Routine
December 21, 2005 2:22 PM

Already I’ve fallen behind with my “weekly” updates! Nothing major or different has happened, but I realize many people are interested in everything about Juliana, not just major events. Some people have asked questions regarding Juliana’s hearing ability. She has a hearing aide, which she’s willing to wear most of the time now (she used to pull it off). I just realized that none of the pictures I’ve posted show her wearing it. I’ll get pictures of her with it on for next time. She will eventually have an implanted hearing aide, but, as with all her surgeries, we really don’t have a time frame of when that will happen. Dr. Wolfe keeps track of her,requesting pictures once in a while, and when he thinks she’s ready for the next step he sets it up.

Part of Juliana’s routine is going to Speech Therapy two or three times a week. She’s learning communication skills using sign language and pictures. The therapists also try to desensitize her mouth, with the ultimate goal of teaching her to swallow. She’s had several surgeries on her mouth already, and always has tubes and wires in her nose and mouth. She really resists having her face touched, or letting anyone put anything in her mouth. Lately though, she’s decided she likes her toothbrush, so she gets to brush her teeth whenever she wants to!

The pictures I’m posting today are of Juliana “reading”. The reason I like these pictures are that they “capture” how intensely engrossed she gets in whatever she’s doing. When she’s interested in something you can’t distract her. She’s very smart. She knows all her “Signing Time” DVDs by heart. Sometimes, atbedtime, she’ll “sign” along to a whole song, looking at me like “You sign too”. But I don’t know the whole song like she does. So I sign “smart girl” and that satisfies her. She turns her attention back to what she’s watching and soon she’s asleep.

—Jeanne ("Party")

In Need of a Hug
December 08, 2005 12:00 AM

I’ve received a few questions which I’ll try to answer. An e-mail from Katie asked about the helmet (mentioned at the end of the documentary), and if it had worked out as planned. Here is a short version of what was a very complicated and difficult time. Juliana had her 2nd jaw displacement done last March. This was a procedure in which 2 rods were placed horizontally through her jaw. As screws were turned (one turn to each screw twice a day) these rods were to gradually separate, causing her jaw area to lengthen . This was to happen over 3 months time. However, instead of the bottom rod being forced downward, the top rod was being forced upward, putting pressure on her eyes. It didn’t look right to me and I showed it to Tami and Thom. Thom took pictures and e-mailed them to Dr. Wolfe, who arranged for Juliana to be seen right away, in Miami again. The top rod was removed, and she was fitted for the helmet. This is how the helmet was to work—extensions were added to the mouth area of the helmet, which, when she had the helmet on, were connected by elastic bands to both ends of the rod which went through her jaw. This was to put enough tension on the rod to gradually cause some lengthening of her jaw area.

She was to wear the helmet all the time, except for bathing. You have no idea how miserable this was for Juliana. Her head would be wet with sweat most of the time, plus I’m sure the tension on the rod in her face was painful. Yet she just accepted that she had to wear it, and went about being herself, playing and climbing. You would think she’d find some way to make her misery known, to fuss and cry to have the dreadful thing removed, but she just went about her day. That’s what she does—she just “gets on with it” as best as she can. What great “heart“!

As it turned out, she wore the helmet for about 3 weeks. Then Dr. Wolfe determined not only wasn't it working, but it was actually doing some harm. It was such a relief to have those rods out. The dear little girl hadn't been able to hug, to put her face near anything or anyone without the danger of jarring the rods! It took a while for her to trust hugging and cuddling after that experience, but she's a hugger now.

I’m posting a couple old pictures so you can see the jaw “distraction” with the 2 rods in, and then the helmet with 1 rod left in. These are "old" pictures—she doesn't have any hardware in place now. I'm also posting a recent pic of Juliana and Tami. It's not a very good quality picture, unfortunately, because I love the picture.

Juliana's doing fine. She hasn't paid any attention to the tree in the living room. That's probally because it's not decorated yet. When she notices her mom putting things onto it, I'm sure she'll get interested in helping!

—Jeanne ("Party")