Networking at Myrtle Beach
July 11, 2008 11:00 AM

In 1985 there was a movie named Mask, starring Cher, based on a real-life story of a facially disfigured teenager. Since that time, Cher has remained involved with disfigured kids and is the National Chairperson of the Craniofacial Children's Association (CCAKids.org).

Along with other events, this association holds a retreat each year for children with any number of disfiguring syndromes. They just held their 18th Annual CCA Retreat and Juliana was able to attend. It was held at a convention center in Myrtle Beach and was attended by about 85 families. There were group activities, such as a visit to the Ripley's Aquarium on Friday and a trip to the beach on Saturday. In the evenings dinner was in a huge ballroom (three ballrooms with the dividers removed), followed by a talent show on Friday night and a dance on Saturday night. Most of these families have been coming to the retreats for years and have come to know each other already, but it didn't take long for Juliana to make a lot of new friends.

It was the first time Juliana had actually seen and played with other children with trachs, feeding tubes, hearing aides, etc. She quickly befriended a little girl a couple of years younger than herself, pushed her around in her stroller, and even tried to suction her. The girl has her hearing aides on a headband like Juliana does, but her headband is red (Juliana's is black), so Juliana refers to her as "my friend with red ears."

The favorite activity of the two girls was to run—the three ballrooms opened up to a space comparable to three football fields, and they loved to just run from one end to the other. Juliana was watchful though. If she thought her friend was venturing off too far she would come and get her friend's dad, taking him by the hand and pulling him out of his chair. Watching them run reminded me of how my son loved to run at the beach when he was that age. Kids like these don't often get to show their exuberance like that, as they learn not to draw attention to themselves. They love going to these functions where there are so many children like themselves.

On Saturday night the dance floor was full. There was a disc jockey playing a variety of music, including line dances. Juliana would watch the dance for a few minutes, then join right in. She loves to dance.

I was so proud of her at her dance recital a few weeks ago. It was probably the first time she had been more than a few feet away from someone she knew and trusted with the suction apparatus. She had to stand with her group, in the wings, in the dark, waiting for the curtain to go up. Tami was close by, with the suction, but Juliana couldn't see her. She did fine, just what she was supposed to do, followed her little group onto the stage and did the dance steps she had learned. Amazing!

Juliana also loves to play dress up. She has several "Disney" style princess gowns. Sometimes she goes upstairs to get her pajamas on, and comes down with a princess gown over her pajamas. She also loves boots. Once she came down with a princess gown over her pajamas and Kendra's fireman boots on. She's quite imaginative!

Finally, it looks like there actually will be a follow-up documentary. It's in the works! Filming hasn't started yet, though. We'll let you know.

—Jeanne

Bags and Baskets
March 25, 2008 5:00 PM

Juliana had her 5th birthday this month. She had a "birthday party" with family and a few friends. She put her presents into one of those large pretty bags which are used for gifts and carried the bag around for days. She loves bags. When I get there in the evening she gathers up some toys and books, puts them into a bag, and brings it upstairs to her room. She wants the bag full of toys in the bed with her. Once she gets in the bed she wants to "multitask." She wants the DVD to be playing, and while she's watching it she also wants to be coloring or reading a book. She'd want me to get into the bed with her but I don't really fit! I kind of lean on the edge of her bed and she lays against me with a hug. She likes to "read" storybooks to me, holding the book and turning the pages for me to see the pictures. After a while she'll settle back against the pillow and soon be asleep.

She enjoyed Easter too. She has an Easter basket which she carries around everywhere. She doesn't eat (she gets her nutrition through her feeding tube), but she likes to taste things. She doesn't really swallow any, but she gets it smeared around her mouth. She tasted an egg and some chocolate. Once she tasted some chocolate cake and signed that she liked "the brown cake."

Juliana's a little "clothes horse." She absolutely loves clothes and shoes. She's going to be in a dance class starting this week and has real tap shoes, which she loves. And she'll love the class! I can't wait! She already loves to dance around. She has a sense of rhythm, even though we don't know how much of the music she can hear. Her hearing is supposed to be close to normal with her hearing aides on, but she's always taken them off for the day by the time I get there. Also, I leave in the morning before she puts them on. It's hard to tell how much she hears of what I say to her. Some things she doesn't seem to hear at all (her monitor alarm, the telephone), but usually if I say her name loudly enough she'll look. We communicate mostly through signs and gestures, but now it's to the point where I need to take a class in signing. I used to be able to bluff her, but that's not good enough anymore.

I do have some good news to report. There was a long time when it seemed like the suture line over her left mandible (jaw) just wasn't going to heal. Dr. Wolf had removed the external screw, but left a piece of metal inside (for a future purpose). In spite of all the care we gave the site, the incision line wouldn't heal. Eventually the metal inside became visible. Then she had an appointment with Dr. Wolf, but came down with a virus, and the appointment had to be postponed. Finally, though, she had the surgery, the metal was removed, and now the incision line is completely healed. She has a scar along her jaw, but that will be revised later. It's just so good to see it healed. It really did have us worried.

—Jeanne

Flower Child
January 05, 2008 3:20 PM

I realize people would like more frequent updates. I'm always meaning to send one in, but keep putting it off.

Sometimes my reasoning is "I'll just wait until her swelling goes down" or "I'll wait until she gets over this cold." I don't like to write an update that makes it seem like she isn't doing well. The thing is, there's often something going on, which might be worrisome (such as an infection at her pin site), or might just be a nuisance (such as a cold). It isn't realistic to expect her to be doing great all the time, although most of the time she is. Even when she's fighting off a complication from one of her procedures, she's still doing "great," in that she comports herself exceptionally well. I have written some version of this so many times it seems like I'm repeating myself, about what a good "patient" she is. But it's true.

Juliana has just returned from Miami where she had another procedure done. Dr. Wolf removed the external screw from her jaw and tightened up her mouth a bit. It was done as an "outpatient" procedure—she didn't have to be admitted to the hospital! The family drove down to Miami on Wedneday, the procedure was done on Thursday, and they were home on Friday. You know, even a cut hurts, and anything that's swollen hurts, and stitches hurt, but Juliana just carries on, being herself, playing and being sweet.

I've been wanting to tell you all how sweet she is with her dolls. She has seven or eight Dora dolls, of all sizes. Some of them are little plastic dolls, and she likes to put them into various bags and little purses. At night she gathers them all together and brings them to bed with her. She takes them all out of their containers and has them all kiss each other. Then, if "Dora" is on the DVD screen, she has them all kiss "Dora." Then she settles back on her pillow, ready for sleep.

Christmas morning was fun. This was the first year Juliana actually enjoyed opening her presents. The house was full of relatives, and Juliana loves having a lot of people around. She'd open a gift, then bring it around for everyone to see. She liked handing out presents too. She got a new bike—but still prefers the older one, even though she's getting too big for it! Really, the kids had the most fun with empty wrapping paper rolls, using them for swords. They do like to use their imaginations!

I'm always amazed by how much smarter kids are now than when I was a kid. I know Juliana is smarter than I was at her age, and she loves to learn. Someone once referred to her as "a flower." I'll add "a flower, in the field of possibilities."

—Jeanne

Halo? What Halo?
October 17, 2007 5:12 PM

Back in September Juliana still had the RED ll "halo" in place. It wasn't bothering her, but some of the pin sites (where the halo was attached to her head) were becoming inflammed. Also, some of the screws had loosened to the extent they weren't even making contact, so the whole thing was becoming unstable. Pictures had been sent to Dr. Wolf and plans were being made for a trip to Miami for Dr. Wolf to remove the device and decide if he wanted to do anything further at this point.

It was on September 24 that it became apparent how loose the halo was becoming, so Thom placed a call to Dr. Wolf, and following his directions, was able to remove all of the RED ll except for the part attached to the roof of Juliana's mouth. This "mouthpiece" will be removed by Dr. Wolf in a couple of weeks.

Thom was able to do this procedure with the assistance of Margaret (Juliana's "day nurse," who's with Juliana at school). Juliana tolerated it fine, and went about her business (playing) as usual.

Tami has written in her update about how she didn't even notice the change. Well, that night when I got there, I didn't even notice either! I went in, and Juliana and I went upstairs as usual. Thom and Tami went up also and we were just talking away, and then I asked, "Are there any new instructions about caring for the pin sites?" Finally they both burst out laughing: "Jeanne, look at her!" "Ohhhhhhhh! What happened to it?"

I had been getting my stuff out and getting things ready for the night, chattering away, and I don't know when I would have actually realized that the RED ll was gone!

Amazing! I couldn't believe how unobservant I had been. I guess that's what being preoccupied is—a dangerous frame of mind! I'm glad they thought it was funny.

Juliana was scheduled to be in Miami this week, but was rescheduled because she came down with a fever and cough. Now she's well and is scheduled to see Dr. Wolf on Wednesday the 24th. We'll have more news for you after that.

—Jeanne

Evenings With Juliana
September 26, 2007 11:35 AM

There has been another short update (video clip) about Juliana on First Coast News. If you go to www.firstcoastnews.com you should be able to locate the video section. If not, just type in "Juliana Wetmore" in the search window and it will pull up all the updates they've done on her. They did a good job on this one. You even get to hear her sweet angel voice.

Since they filmed the update Juliana's "headdress" has been partially removed. The screws are out of her scalp, but the mouthpiece is still in and will stay in until next month. Then she goes to Miami for a bit more work to be done.

Back in August when Juliana was sick and receiving IV antibiotics the insurance company approved 10 hours of nursing for her instead of her usual 8 hours. So instead of working from 11 p.m. to 7 a.m. I was approved to work 9 p.m. to 7a.m.—2 additional hours a night. When she recuperated from that infection the hours returned to 11 to 7. But Juliana had become accustomed to having me arrive at 9, and expected me to be there at 9, so that's when I get there.

I'm told she begins to watch for me as 9 o'clock approaches, signing, "Where's My Party?" (Her name for me remains "My Party.") She often runs out onto the porch to greet me, and then announces to everyone present, "My Party"!—emphasizing the "My." Then we go upstairs together and follow our routine. I've mentioned several times how much she loves routine. It's not so much that Juliana is eagerly waiting to see me, but that she loves our routine. She goes to the closet and gets my slippers. She gets my clipboards and my pencil box. She gets my magazines and puts them by my chair. She gets three cans of tube feedings and puts them beside the bed. She gets the crayons and coloring books and puts them on her bed, and her stack of Dora books, and her Dora dolls. Then she puts a disk into the DVD player and gets into bed. She then tries to "multi-task," coloring and reading and singing and dancing with the Wiggles on the DVD, and usually is asleep within a few minutes.

Whew!

So I get there earlier than I have to, and will continue to do so, as long as Juliana expects her "Party" to be there before she goes to sleep. It's a privilege to be Juliana's "Party".

—Jeanne

Dance Party!
August 08, 2007 10:45 AM

Juliana has had her "headdress" (RED: Rigid External Distraction) on for a month now. We're finished with turning the screws and are just giving the bones time to "set" and fill in with new growth. Tami keeps Dr. Wolf updated with digital photos. We're expecting to hear from him any day now, then we'll find out what he plans to do next. We've had a difficult time with this procedure—not Juliana, but us! The device worked just like it was supposed to, and it really didn't bother Juliana at all. She didn't have any pain from it, and it didn't slow her down one bit. She ran around playing as usual, and if she happened to bump her hardware into something (or someone) she'd just laugh.

This procedure was difficult for us because it hadn't occurred to us that we might make her look worse before she ended up looking better. We just assumed each time she'd look a bit better, but this time it seemed to us that we were stretching her nose way too far outward. Tami and I were quite upset and didn't want to turn the screws anymore, but Thom drew us a diagram and explained Dr. Wolf's plan, how with the next couple of procedures he'll straighten out her jaw, and what with the new skin that's been created (by slowly stretching her nose downward and outward), he'll have a place to construct some cheekbones for her. So we have a better understanding, but it's still difficult to observe the daily changes in her facial structure.

Everyone's children grow and change, but it's a gradual process. It happens so slowly you hardly notice. But this month Juliana has looked different from one day to the next. Someone mentioned to Tami that "it must be bittersweet." We loved the Juliana we were used to—but Juliana is the same dear little girl, no matter how fast she changes before our eyes.

One of the photos I'm posting shows Juliana at her TV watching her current favorite DVD, The Cars. We watch it every night as she falls asleep. The other night I was thinking I'd like to put a different DVD on, so I changed it and put on The Wiggles Dance Party. That was an error on my part. She was dancing all over the bed, along with The Wiggles, so I said, "Okay," and got her out of bed "for a while." She followed along and danced to all 16 of the songs. She knew all the dances and did them all. Then, when that DVD was over, she was ready to get back into bed and watch The Cars. She watched about 20 minutes of it before she finally fell asleep.

She slept well, though, so I was glad. I do a lot to her while she's asleep—eye care, mouth care, and pin care. There are five bolts on each side of her head to keep clean and apply ointment to. There's a lot I can do while she's asleep that she won't let anyone do it when she's awake. I'll tell her about it someday.

—Jeanne

Remarkable Progress
July 19, 2007 12:00 PM

Juliana's surgery was just over two weeks ago, when she had the "Rigid External Distraction" (RED) applied, and she was having remarkable results. Already her nose has moved into an optimal position and we don't have to turn the screws for that part of her face anymore.

A problem occurred with the mouthpiece on Monday. It appeared as if, when the screws were turned, the mouthpiece was moving downward but was not moving any part of her face along with it. The mouthpiece had visibly moved into a different position. Tami took some digital photos, e-mailed them to Dr. Wolf, and the next day they were on their way back to Miami. Juliana was taken into the OR yesterday to have the "headdress" adjusted, and I'm expecting them home tonight (Thursday).

Dr. Wolf is pleased with the progress made in just the two weeks since the new hardware was applied. We could see the changes taking place daily, as her nose moved forward and outward.

The device looks horrible, but really, Juliana doesn't mind it. She doesn't have any pain from wearing it. She never complains about it, or even picks at it. She's never tried to take it off, or even move it.

When she first got home, she looked at herself in the mirror, waved, and went about her business. On occasion when she has bumped into something with it, she laughs. It has not slowed her down at all. She even went bowling with it on, and had a great time. She remains amazing.

—Jeanne

Life Has Its Own Schedule
July 13, 2008 8:00 PM

What an intense rollercoaster this summer is turning out to be!

The summer began very peaceful and even a bit boring. Kendra had two weeks of camp, football, and soccer. This was her first time actually playing football other than with the boys at school. She is hooked and wants to play on a team in the fall. As long as she is active and doing something healthy, I guess I can't complain.

We began our summer trips the last weekend in June. We went to Myrtle Beach, SC, for our very first craniofacial retreat. We had an absolutely fantastic time. As Nurse Jeanne noted, the retreat was put on by Children's Craniofacial Association. We had the honor of meeting some really incredible families. It was so awesome to see all of the kids interacting with each other without anybody judging them or staring at them. I am guessing that there were about 85 families attending this year. We made some new friends who we will definately be staying in touch with. We are already planning our trip to Dallas for next year's retreat.

The following week after we returned home we went to the dentist. Juliana had another x-ray to compare with the one from a month prior. She had significant bone loss within the month. The dentist and orthodontist both recommended that we go to see Dr. Wolfe, ASAP. So Juliana and I made a trip down to Miami on Sunday, July 6, to see the doctor on Monday. He was also concerned and we ended up scheduling surgery for Aug 20.

This is a procedure that we were already expecting, but not until next summer. He will be transplanting some skin from her upper back area to her cheeks. It is a bit more complicated than it sounds. The skin will be separated from her back, but not completely. That skin will be attached to her cheek area and also to her back at the same time (one end to each area). We are starting with her left side and will do the right side at a later date. It has to be done this way so that the skin always has blood flow to it. Because of the way that this has to be done, her head will be turned to the left for approximately two weeks while the vessels attach and heal properly.

When Dr. Wolfe feels that it is time (approx. 2 weeks), she will go back to the O.R. for the second half of the procedure. This will be to separate her cheek from her shoulder. I hope I explained this in a way that it is understandable. It is difficult to understand without pictures or being able to physically show it.

The documentary crew will be accompanying us to Miami. We are looking forward to seeing them all again. They are such a great group of guys and of course do an amazing job at capturing our journey.

Our next adventure for the summer will be our trip to Illinois. I can't wait! I feel like a kid going to Disney World. I don't know what I was thinking booking an early morning flight. I am never on time to anything. Kendra suggested that we just spend the night at the airport! I have already started my packing list. Juliana's supplies and equipment are my biggest worry, of course. I can't just run to the store if I forget something. It will all work out I'm sure of it. I just take life one moment at a time. Things don't always run smoothly in our lives, but we have learned to just roll with whatever is happening.

Needless to say, Juliana will not be starting school in August (it starts on the 18th). We were all looking forward to a normal school year. She deserves that! But, this surgery can't wait any longer. Hopefully she will be able to attend between the left and right side surgeries.

I will update again as the little diva allows!

—Tami

Don't Fix What Isn't Broken
June 02, 2008 3:15 PM

Once again life is moving at 200 mph. The school year will be wrapping up in two days. It is so bitter sweet. I truly enjoy seeing my girls grow before my very eyes, but their innocent years are going by way too fast. I will do my best to keep them innocent as long as I can.

Thom said his good-byes to the girls and put them to bed last night. He had to be at the base at 11:00 p.m. to leave on deployment. I received an e-mail from him a few hours ago and he has made it to his first destination safely.

We had a very nice weekend together as a family. On Saturday we took the girls mini-putting. Neither one of them had ever been before. They both really enjoyed it. I am sure we will be going again soon to finish the course. We only played eight holes because they both had sweat dripping from them at that point. After that we went out to dinner and rounded out the day by stopping by Thom's brother's house to visit for a little bit. It was such a relaxing day together.

Juliana will only have about a week and a half off of school before summer school starts. She definitely needs the structure of school during the summer. I don't know how many summers I will be able to send her without a fight from her. Right now she is such a sponge and really enjoys learning.

This summer and next school year are sure to be a challenge to her and me both. Our school district has decided to turn her life completely upside down. They have decided to give her a new nurse starting during summer school and continuing into the school year. She has had the same nurse for both years of Pre-K and now suddenly they have decided to change that. This is the worst possible time that they could make this decision. She will be starting kindergarten at a brand-new school next year (kindergarten is way more intense than it was 24 years ago when I went.) She will have two new teachers (one for regular kindergarten and one for her hearing impaired classroom). She will not have any of the same therapists at school that she is used to. And to top all of that, her daddy is gone and she doesn't understand why he is not coming home from work every day.

To everyone who is intensely involved with Juliana this makes no sense. The people who sit behind the desks at the county office and make all of the decisions do not seem to be looking at the big picture. I am supposed to be meeting with the new nurse tomorrow morning. I am really trying to meet her with an open mind; this is not in any way her fault. I just don't feel that this is the best time to do this to Juliana.

Kendra is starting her summer by staying busy, with what else but sports! Football camp starts next Monday, and is followed by soccer camp the following week. We will have an opportunity to hang out at the pool a bit while Juliana is in school. We don't get to do that with Juliana. I am a little paranoid because of her trach. She doesn't like the water too much anyway. And she can not be out in the sun for too long. The sun really bothers her eyes.

The girls and I are all pretty excited about our trip to Illinois this summer. We have decided to fly instead of drive. With the price of gas right now, we can fly for the same price. Three hours on a plane certainly beats 18 to 20 in the car.

Check back again soon for more updates. We are planning to be very busy, so I should have a lot to talk about.

—Tami

Feisty Dancer
April 21, 2008 11:00 PM

Here we are almost at the end of another school year. Where has this year gone? Life only seems to go by faster each day. I have been trying to make mental notes of things that I wanted to tell everyone about, but do you think I can remember very many of them right now? Of course not!

The first thing that I have to tell everyone is that Juliana finally was able to start dance classes. She is doing a ballet and tap class. She is so cute in her tights, her leotard and her little skirts. She started her very first class a few weeks ago and she looks like she has been doing it for years.

She is doing fantastic in school! She really loves her teacher and her friends are great. The kids are so accepting of her. Some days when I pick her up I hear stories about the girls fighting on the playground over who gets to play with Juliana. I am getting nervous about transferring her to a new school yet again. That will be three different schools in three years.

Kendra is playing soccer right now, so they are really keeping me running. We are counting down to Thom leaving on deployment again. We have about five weeks left before he leaves. We are not even definately sure about where he is going. Nothing like waiting until the last minute to get prepared!

This summer will be just as busy as the school year or maybe even more. The girls and I have three different trips planned for the summer. Juliana will be attending summer school and Kendra will be going to sports camps in between our trips.

Juliana has been very trying of my patience lately. I attended a seminar this past weekend at our church about raising a strong-willed child. It really opened my mind up to where our problems lie. I came home and told Thom that these next five weeks were going to be a crackdown on her. It all seems to be working so far. She was not too happy yesterday when she missed out on bowling because she had a meltdown as we were getting into the car to go. She stood outside the car on Kendra's side knocking on the door. I walked around and told her to get in through her door. I proceeded to put my hands under her arms to lead her to her door and she lifted up her legs and kicked me in the shin. That was the end of her afternoon of fun. Thom quickly changed his plans to go fishing with his dad. He stayed home with the diva while I took Kendra to the birthday party. She is in the process of realizing that she is not in charge!

I better wrap this up. It is late and I can't remember everything that I had to tell you all anyway. I guess I better start taking notes to remind myself.

—Tami

Christmas and Beyond
January 13, 2008 8:40 AM

I have sat down so many times to do this and something triggers the girls to start climbing on me and suddenly need something. Maybe it’s the sound of the keyboard, sort of like when the phone rings and suddenly everybody needs your attention …

But right now it is peaceful in our house. Everybody is still sleeping. It is just me and my cup of coffee.

Way back to Christmas— It was really nice. The house was a bit crowded, but I love having a full house. Kendra was ecstatic when she woke up and Santa had come. He brought her a basketball hoop this year.

Juliana on the other hand was not so thrilled about the thought that Santa had been in her house. She is terrified of Santa. Santa brought her a new Dora bike. She wants nothing to do with it still. She is perfectly happy riding her old Princess bike, which she is really too big for. Juliana also received some new puzzles and a whole new set of Signing Time DVD’s. (We LOVE Signing Time if anyone is interested in awesome educational DVD’s.)

Gregory and Kaitlyn were able to spend a couple of weeks with us. It went by so fast. I am already looking forward to when they get to come again. They are such awesome young adults. One of my favorite parts of their visit was when I was able to spend time away from the house with just them. We went shopping and to dinner, just the three of us. It is really nice to have conversations that do not include “Hannah Montana” or “Dora.”

My parents were also here for a few days. My mom was not going to be able to get away from work, so she was a bit upset that my dad was going to get to be here. She called me on her way home from work the night before my dad was leaving and told me that for her Christmas gift, her boss gave her time off to come down and be with us. We realized while they were here that this is the first Christmas that we have spent together since Kendra was an infant.

The girls returned to school on Jan 8. That was long awaited by all of us. Kendra was really missing her friends and her teacher. Juliana started a new school when she returned. She will be finishing out the year there and then returning to our local school next year.

She has only been able to go one day so far. We are still fighting with this surgical site. She still has a bit of pus coming from it. As soon as this heals up and she gets back to school the remainder of the year will be just a regular year of childhood for her. She is taking the rest of the year off from any surgeries.

Thom will be leaving for deployment in a few months. This is supposed to be our very last deployment. He will rotate back to shore duty before his squadron deploys again. And then he will retire from shore duty. That is so scary to be thinking about retirement already. The Navy is the only lifestyle that I have known in my adult life. I am not in any way ready to leave the comforts of the Navy and return to civilian life.

I guess I better wrap this up. Kendra is awake now and I am sure it won’t be long before all of the peacefulness is over.

—Tami

Sass and Sandwiches
December 11, 2007 12:00 AM

Here it is, another long awaited update. I actually tried to type an update this past weekend and my computer decided when I was half way done that I was taking too long and kicked me off. Don't you just love technology!

We had a very nice Thanksgiving with my family in Illinois. It was a very long trip, but well worth it. Each day that we were there was packed with plans to visit with two or more families. Juliana actually got to see snow for the very first time. The night before Thanksgiving it snowed a little bit. Kendra was out in it the next morning trying to make snowballs to throw at Papa. Juliana didn't want anything to do with it. She is my tropical girl. Give her a sundress and some flip flops and she's happy! Kendra can adjust to anywhere that she can be active and moving.

We will have all of the kids together again for Christmas this year. Gregory and Kaitlyn will be coming to spend a couple of weeks with us. It is so nice to have them all together. We don't have any plans while they are here other than Christmas day. It will be pretty quiet around here I think.

Juliana has been out of school for over two weeks now. We are running back and forth to a couple of different doctors twice a week. She has an infection in her jaw where the internal distractor is right now. Last week we thought that we had taken care of it, but it is oozing pus again. We will see our surgeon here locally again tomorrow and see what he has to say about it now.

She thinks that she is so sneaky: I took the girls to a Christmas party last weekend and they each brought home a stocking full of candy and little toys. Silly me, I thought that Kendra had already taken care of all of the candy in both of them. But obviously she had not. Juliana took her stocking up to the play room and helped herself to a red lollipop. When I went up and saw her she was opening a package of Smarties. I called her name and she dropped them and held her hand in mid-air. She looked up at me with the "I didn't do anything" look. Maybe she thought that I wouldn't notice the red all over her face and shirt.

This morning she was in the bathtub and she was being silly. I asked her, "Are you being sassy?" She shook her head yes. I asked, "Are you going to continue to be sassy?" She shook her head yes. I asked, "Do you want a knuckle sandwich?" She shook her head yes and then signed "tomato." I will be sure to get you a tomato with your knuckle sandwich!

—Tami

Surgery Report: Thumbs Up!
November 07, 2007 7:40 PM

Hooray! I don’t know what was happening with the website for the past few days, but at least it is back up and running now.

Here is the latest: We traveled to Miami last Wednesday for surgery on Thursday (November 1). Surgery went fantastic and she was sitting up in her hospital bed later that evening giving the nurses and myself her true attitude.

Dr. Wolfe removed the remaining piece from her mouth, stitched her mouth closed a little tighter on the left side, and placed an internal distracter on the left side of her jaw. This is to help straighten her jaw back to where is belongs.

Thursday night was wonderful: Juliana slept soundly all night (which is more than I can say for Mommy in the rocking chair). Friday morning when the doctors made their rounds we didn’t see any reason for her to stay. We were back home and she and Kendra were in each others arms before bedtime.

Saturday and Sunday was not too exciting for Juliana. We made her stay in the house for the most part just to let her new incisions heal up a bit. For the most part all of the bleeding and oozing have stopped now. She is ready to go back to school and get a break from Mommy for a while. Hopefully she will be back on Monday.

That will give me next week to pack and prepare for our vacation. We will be driving to Illinois for Thanksgiving. It has been a while since I have seen my family and I really look forward to any opportunity that I have to spend with them.

—Tami

Quiet (and Not So Quiet) Moments
October 15, 2007 10:06 AM

I have a few minutes between picking kids up from school, so now is a good time for a new update. I guess the most important thing to talk about is Juliana's upcoming surgery. She is now scheduled for November 1. Dr. Wolfe will remove the only remaining part of the halo (the piece in her mouth). Yes, I said the only remaining part. Thom spoke with Dr. Wolfe a few weeks ago and he just so happened to be picking her up from school that same day. When I came home to grab her and run to therapy she was screaming and her feeding pump was alarming. I went tearing up the stairs and she was dripping wet from the bath and had a bit of blood still dripping from the screw sites.

I did not even realize that it was gone—I was just so focused on finding out why she was screaming. Thom actually had to tell me that it was gone! I was a bit upset for a while. It took me some time to soak it all in and even be able to speak to him. Of course now I am thrilled that it is gone. I am not sure yet what else this surgery will entail. We will not know for sure until we meet with Dr. Wolfe the day before surgery.

Other than preparing ourselves for another surgery things are pretty "normal" around here. School is going well. She is behind in a few areas and right on track in others. Of course communication will always be our biggest obstacle to overcome. She is able to wear her "ears" again now and that really helps.

We have started thinking about next school year already. She will be in kindergarten. Where has the past four and a half years gone? Kindergarten is very fast paced here in our county. The kids really develop and grow educationally during that time. We will be visiting a couple of different schools after Christmas to get a feel for them and see what they could offer to Juliana.

There have been some questions posted on the site and here are the answers to them … Juliana is able to hear a little bit without her "ears" on, however she hears much better with them. Without them we have to yell at her and she always has the TV at the highest volume. With them we can speak in normal voice and the TV could really be at a lower volume, but she likes to take it "all the way" up. When Ariel (The Little Mermaid) is singing I just close the door to the play room and let Juliana have her time. That is the movie du jour right now.

The other question is regarding leaving old pics on the site. If I understand this correctly: We only pay for a medium size storage room and we would have to have a larger storage room to leave everything on the site. I do not understand computers other than to check my mail and post updates. Maybe our fabulous webmaster could answer this question?

My quiet time is just about over so I guess I better wrap this up. I may have a chance to post again before we leave, but no guarantees.

Webmaster: Tami's partially correct about older pictures. The bigger problem is that pictures, which are large in size, require heavy transfer operations—from our server to your browser, and that comes with a price. The more pictures, the more transfers, which drives up our costs.

2007-10-17 02:10 p.m. I guess I should have been a little more clear about the halo. With Dr. Wolfe's permission, Thom cut the wires, unscrewed the halo and removed it. It truly wasn't a difficult thing since all of the screws were already being constantly tightened just to keep it on her head. It was a little terrifying for her just because she didn't know what was happening. I tried to get a picture of her holding it later on (just to send to my mom to scare her) but she would not even look at it. Now when she sees it in her bedroom she points at her face and signs "all done."

—Tami

Stay Tuned ...