Just Another Kid
February 16, 2009 8:00 PM

My apologies again, for not making timely entries in this journal. It gets more and more difficult to write from the viewpoint of Juliana's nurse. For long periods of time the nursing is quite routine. For most of my shift Juliana is asleep. While she's sleeping I give her eye care, mouth care, and trach care. She gets a tube feeding throughout the night, and is suctioned as needed. She may require a respiratory treatment. I bring her to the bathroom and back without even waking her up. I give a couple medications. And I'm there.

If she's recently had a surgery or procedure, there are more things to do. She often has incisions to care for, which is especially difficult when the suture lines are near her mouth. In between her surgeries she's basically a well child. Yet she still has a nurse at night, especially at night, because of her trach. We don't know how long she'll continue to need it.

I've received a few e-mails wondering why we haven't posted recent pictures (a new picture has now been posted). Well, you know, Juliana's facial reconstruction is not finished. It's a work in progress. Juliana has had over 30 surgeries, some of them complicated, some kind of minor. At first I expected, each time, to see a major improvement, but came to realize it's not like that. It's a long, slow process. Sometimes it's "two steps forward, one step back." Occasionally it has even been "one step forward, two steps back"! It's disappointing when it seems as if little progress is being made, but when Dr. Wolf explains his plans and strategy it's easier to bear.

Juliana doesn't have any cheekbones, and the skin over where her cheekbones should be is taut. In order for bone to be transplanted to that area, there needs to be enough skin, or cheek, to cover the bone. First the "cheek" must be formed, then there will be a place to put the cheekbone. It's being done one side at a time, which gives her a kind of lopsided look. She has a new cheek which looks too big and puffy. The next procedure will "debulk" it—as Tami wrote, "smooth it out." She's in the middle of having her left cheek formed, then the process will start over to form her right cheek, then the work can progress to her cheekbones. At each stage in the process there are possible complications, e.g., dehiscence, keloids, infection. Through it all Juliana is a loving, friendly, happy, creative, and playful little girl.

So far she has accepted the way she looks without making a problem of it. She has remarkable self-esteem and self-confidence. Once Juliana and Kendra were somewhere with other children around. One child was calling attention to Juliana and making rude comments. Kendra remarked to the group, "She's just another kid." She is that. And more.

—Jeanne

Safe at Home
November 28, 2008 11:00 AM

Still no pictures for you! Juliana returned from Miami yesterday (Thanksgiving Day) with the black surgical dressing removed from around her mouth. However, it was replaced by a sutured-on white dressing, which looks like a pile of cotton balls stuck to her mouth. This will come off in about a week—then we'll see what her new skin graft looks like. Dr. Wolf has been working on the left side of her mouth. He'll start working on the right side on December 17. It seems like a slow process, but she has come a very long way from where she started.

Last night Juliana had a new DVD to watch as she went to sleep, a Barney Christmas DVD. She couldn't go to sleep, though, until she had danced along to all the little dances. Barney and the characters in the video use a lot of arm movements in their dances, and she quickily learns all the moves, which she does while sitting up in her bed! Not only that, but she wants me to do them too. She'll be watching the screen while at the same time keeping an eye on me to make sure I'm doing it right.

Usually on her first night back from the hospital it takes her quite a while to relax, and then she'll sleep lightly, pushing away my hands when I try to work on her. Last night she watched Barney and two Signing Time DVD's before she fell asleep, but she slept well and I was able to clean her suture lines without waking her up. When she sleeps well like that I know she's feeling safe, back in her home.

—Jeanne

"Partie" All the Time
November 25, 2008 4:30 PM

You may notice that my name is now signed "Jeanne (Partie)" in this column. I have written about the name "Partie" before, but I looked back and the last time it was mentioned was September 26, 2007.

It's Juliana's name for me. She's always referred to me as her party. She signs "my party," emphasizing the "my." It started when she was about a year old. She'd be fighting sleep and I'd lay her down again and again, singing an old Eddie Murphy song—"My girl wants to party all the time, party all the time." Sometimes Tami would stick her head in and say, "How's the party going?" When I'd get there in the evening Tami would say, "Juliana, your party's here." So that became my name.

One of the things that Juliana is able to say quite clearly is "Party, look!" I love to hear that. You might notice some of the letters in the Guest Book mention "Party," referring to me. I love that, too. I play with the spelling and sometimes spell it "Partie," but that's who I am, Juliana's party.

—Jeanne

Brave Little Angel
November 25, 2008 7:30 AM

Sorry, no pictures yet. Juliana has a "surgical dressing" sutured around the left side of her mouth, which is black and looks like a handlebar mustache. It's temporary and will be removed today, as she goes back to Miami for another skin graft.

When I first saw it, before I realized what it was, I was shocked. I thought it was necrotic tissue, and that the skin flap had failed. But thankfully, that's not the case at all. The skin flap "took" very well, and her suture lines are healing. The area is sensitive and she doesn't allow much touching or cleansing of it, so a lot of that is done while she's asleep, but she's in a lot less discomfort than we were anticipating.

The main challenge has been securing her trach. Usually it's secured by a velcro tie around her neck, but because of the skin flap and sutures, we couldn't put anything around her neck that would constrict that area. The flanges of the trach were being taped—held down with duoderm and waterproof tape. Because of increased oral secretions and drooling, the tape often became loose.

Juliana needed constant supervision to make sure she didn't cough out her trach! Also, changing the loose tape was an ordeal, because her neck was becoming iritated. Finally her sutures had healed enough that we decided to try loosely applying a trach tie, just enough to secure the trach without putting pressure on the skin flap. Thank God, it works! Anyone who's had a dressing removed knows it pulls the little hairs on the skin and it hurts.

Juliana was breaking my heart: trying to be so good and let us remove the tape from her sensitive neck area, but unable to resist trying to get us to stop. I'm so glad we don't have to do that anymore. Next, when she returns from Miami, I'll let you know what's different.

—Jeanne

Work and Rework
November 12, 2008 11:30 AM

Juliana had an extensive surgery on November 5, during which Dr. Wolf utilized tissue and skin produced by the "tissue expander" to work on her upper gum and lip area. This had to be revised yesterday, November 11. I was concerned that she had to go back to the OR so soon, but Tami reports that the revision is an improvement and that Juliana feels much better. If there are no further complications they should be home Friday. I can't wait to see her. I've really missed her. We'll post pictures when she gets home and settled.

—Jeanne

Best-Laid Plans
September 02, 2008 8:00 AM

It's been a couple weeks since Juliana went to Miami Children's Hospital for a major surgical procedure which we were looking forward to and dreading at the same time. To augment what Tami talked about in her last post:

What happened was that Dr. Wolf did a different procedure than the one we were expecting. He found that there wasn't enough tissue to do what he wanted (reconstruct her upper gum and lip), so he inserted a "tissue expander" into her left scapula area (left upper back). Once this incision has healed we will start the process of injecting a small amount of the prescribed fluid into the port, which will gradually fill the reservoir that Dr. Wolf placed under her skin. This will cause the area to gradually expand and stretch the skin, similar to how the skin stretches when we gain weight. When this process is completed there will be extra skin and tissue for Dr. Wolf to use, and he'll do the next surgery.

What Juliana has been through with this sequence of events so far has been quite painful for her. She resists having the bandage changed, etc. But she remains resilient and forgiving, ready to hug and play.

Just before the trip to Miami the film crew was here taping, and they also went to Miami to tape there. They may be able to return to include the next step of the surgical reconstruction in the documentary, but they definitely plan to be here filming when Thom returns from deployment in December. Knowing that, don't expect the finished documentary any time soon. But at least it's begun, and is in the works! Juliana loves being filmed, and is ready to pose at any time.

—Jeanne

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

Summer at the Speed of Juliana
June 21, 2009 8:00 PM

This child never slows down! She was back at school a week after surgery. But of course recovery could not have gone that smoothly: She came down with pneumonia, which took her out of school for a whole week. But she was right back at 100 MPH.

The remainder of the school year was great. She continued to excel in everything. She will be starting summer school tomorrow. She definitely thrives on the structure of school. It is only 4 hours, three days a week, but at least it will keep her mind moving towards first grade. Yep, first grade already! Unbelievable!

She was so precious at her kindergarten graduation. She marched in with all of the kindergarteners. They all sang a couple of songs together. And she walked across the bridge and shook hands with the principal when they announced her name. Thom and I were so proud of her.

The same year that our baby graduated from kindergarten, our oldest daughter, Kaitlyn, graduated from high school. We went to Maine last week to see her ceremony and spend some time with family. We love you, Bob and Michelle. Thank you for putting up with the chaos that we call life.

It is hard to believe that when I met Thom, Kaitlyn was Kendra's age now. Wow, how life has changed in the past 10 years. Never did I dream that this is what God had in his plans for me. I wouldn't change a bit of it! We have four amazing kids who are becoming amazing adults.

I am still trying to recover from the trip. The laundry is almost caught up, just in time to pack it back up again. We will be leaving on Wednesday to go to Dallas. We are so excited to be attending the Children's Craniofacial Association (CCA) annual retreat.

The retreat is in a different location each year; last year we went to Myrtle Beach. This year is the 20th anniversary and it is going to be held at the Great Wolf Lodge. It looks awesome from the pictures! We can't wait to see the friends that we made last year. The retreat is such a safe place for the kids. Nobody is staring at anybody else, they are just all kids there to have a good time.

No time to relax this summer! Summer school will continue most of July while Thom is gone to Virginia to school for the entire month. In addition to shopping for new sneakers and school supplies in August, we will be preparing for Juliana's next surgery. She is scheduled for August 20th.

The tissue expander in her back has been expanded to its fullest for quite a while now. That tissue will be separated from her back and attached to her right cheek area, in the same way that her left cheek was formed. Her left cheek will receive the final de-bulking process. And the most exciting part is that her BAHA (hearing aid) implants will be exposed so that we can attach her hearing aids directly to her head rather than using the headband that she has been with for the past several years.

I am most excited about her BAHA's. The headband is a pain sometimes for her to wear, and this will give her better contact between her skull and the hearing aids. She will have no more excuses for not listening to me!

—Tami

Drive-Thru's and Rollercoasters
April 08, 2009 11:00 PM

One more surgery for the record books: Juliana came through today's superbly. Dr. Wolfe did exactly what I had explained in my previous post. She has a tissue expander in her back now, and he began debulking her left cheek and also did a bit of a scar revision on her back from where he moved the tissue to her cheek. Her left cheek looks beautiful. This is only the first step in the debulking process, but at least we can see a better idea of the end result.

Juliana is in great spirits now. She is taking it easy watching … yep, you guessed it, Mary Poppins!  We are expecting to head for home tomorrow. This is starting to become like "drive-thru" surgeries. You won't hear any complaints from any of us, though.

We actually did get to enjoy a day of family fun before we came to Miami. Last weekend we all went to an amusement park. It was a small one, but very nice for a day and not too overwhelming. Kendra is fearless when it comes to the rollercoasters. She and daddy went on every one of them. Juliana was upset because she was not tall enough to go on the big ones. But, she did go on all of the rides that she could and loved every one of them. I will always be the official photographer—from the ground.

—Tami

Happy Birthday! (Sort Of ...)
March 19, 2009 8:30 AM

It totally amazed me that so many people remembered Juliana's birthday. She is six now, it is so hard to believe. I still see her as my sweet little baby. In fact, she still tries to get me to carry her like a baby sometimes. Oh, how I wish I could at times, and keep her safe in my arms forever.

Her birthday really was not great this year. It just so happened that she ended up scheduled for a swallow study on her birthday. There are 364 other days in the year, and she gets scheduled on her birthday! All of the other children that were coming out of the rooms before us were all fine, but not "my sweet princess." She decided that she did not want to be there and was not going to do anything that we asked of her.

She was a bit frightened at first, rightly so. We explained everything to her and explained that nothing that was going to happen was going to hurt. She was only eating pudding. How bad could that be? But she was not going to trust anybody in that room. She screamed and cried and threw a tantrum like a two-year-old. Needless to say, Mommy was not happy! And I was even more "not happy" when we were leaving and I had to carry my six-year-old through the hospital and the parking garage to the car because she would not put her feet on the floor.

She cried herself to sleep in the car on the way home and spent some quiet time in her room when we got home. That gave me a little bit of time to calm myself down and try to refocus on her birthday. She opened her presents and had cake later in the evening when Daddy and Kendra got home.

We had a special "Mommy and Juliana Day" last Monday. We rescheduled therapy from 7:30 a.m. to 11:00. After therapy we went to the park near our house to feed the ducks and play on the playground. We had a really nice time together just the two of us. She talked all morning about feeding the ducks-but when we got there she was not so keen on the ducks.

They are not the least bit afraid of people and came a little too close for Juliana's comfort. After feeding them two slices of bread while continuing to back up the whole time, she ran behind me and said "I'm scared of the ducks!" They are so used to being fed, that people do not scare them at all.

Juliana's communication and language skills are exploding right now. She is so smart, and it is all finally beginning to flow out of her. After her bath in the morning, we wrap her hair in a towel. When we are ready to take it down we brush it and put her ears on. A couple of mornings ago I told her to go get her ears and she told me "I not listen now, I listen later." Sorry sister-you will listen to me ALL of the time!

We have scheduled her next procedure with Dr. Wolfe. Spring break will be in Miami this year. Well, hopefully not all of it. She is scheduled for April 8. He will be putting the expander in her back on her right side. This will be for the same procedure that he has done on the left. We will slowly fill the expander with saline and then, in a few months, he will be moving tissue from her back to her right cheek.

He will also begin the "debulking" process on her left cheek. As you can see in the "Dainty Flower" picture her cheek is not completed yet. According to what he has told me, this should take two separate procedures to complete. During the second stage of the "debulking" she will have her BAHA (hearing aid) implants, that she received in November, exposed so that we will be able to use them, hopefully this summer.

As I write this I realized that I use the word "hopefully" a lot. That is how our life works. We make plans and "hopefully" they work out, or at least whatever does happen is "hopefully" manageable.

We are continuing to move ahead with the adoption process to bring our sweet angel home. It is such a "hurry up and wait" process. All of the paperwork has to be completed within a certain period of time so that nothing expires before it can all be submitted together. I am actually understanding the process a bit better now. In the beginning, my head was swimming with words that I didn't even know what they meant.

We are so excited for her to come home. As I go through each day I constantly think about packing one more lunch in the morning, choosing clothes for one more for school, taking one more to dance or piano (or whatever she chooses to do), and tucking one more in at night. Please keep this process in your prayers. It is such a long road, but the reward is so worth the struggles.

I am having flashbacks to my childhood as I finish this post. Juliana's favorite movie of the week is Mary Poppins, my all time favorite Disney movie! She and Kendra are both not feeling very well today, so we are on round two of "Supercalifragilisticexpialido-cious."

—Tami

Princess Mornings
February 14, 2009 10:00 AM

It's official! Juliana does have "pianist hands and ballerina feet," just as her daddy said so many years ago. She has now begun piano lessons. She has had two lessons so far; the first one didn't go so well, but the second one she really enjoyed. Hopefully we are heading in the right direction and she will continue to participate and enjoy each lesson.

She is still not very pleased that she has not returned to dancing yet. She really loves to dance. It is just too late in the year now and we are already thinking about the next procedure in Miami.

I will be contacting Dr. Wolfe in the next couple of days to start discussing when we need to go back for him to begin smoothing out her new cheek.

We really haven't been up to anything too terribly exciting since my last update. Just everyday life: school, therapy, and finally enjoying the Florida sunshine. We are looking forward to planting our first flowers of the year tomorrow.

I won't let you down, of course I have funny and cute Juliana stories to share. First of all … I think she really believes that she is a princess. If we try to hold her hand, or if we are walking down the stairs with her, she will turn our hands so that she is able to lay hers in ours just like a princess. And there is no moving quickly during this time. She will enjoy every second of her "princess parade."

I don't know what got into her last week, but she was waking up between 4:30 and 6 a.m. Usually Kendra is my early riser and Juliana likes to sleep in. So, needless to say Juliana was able to enjoy a couple of mornings of waking her sister for school. Kendra enjoys waking her sister, too, but they both have very different ways.

Kendra gently pulls the protective plastic covering from Juliana's eyes that she sleeps with every night. Then she turns off her monitor and removes the leads from her. And finally she hugs her and lifts her down off of her bed and tells her "good morning."

Juliana on the other hand is not so sweet in this situation. Before I knew that she was in Kendra's room, she had snatched a pillow off of Kendra's bed and proceeded to beat her over the head with it. It's a good thing that Kendra is a morning person—and that she loves her sister so much!

I have been reflecting a lot lately on a blog that I read regularly. The blog is written by Rachel Coleman from Signing Time. Her latest entry, titled My Life Is … , is very thought-provoking, and I just wanted to share it with you all. Rachel is a fantastic writer, and I hope that you all enjoy it as much as I do.

Thank you for all your posts on the guestbook. I read them daily and enjoy hearing from everyone.

—Tami

Big Year, Big News
December 31, 2008 10:40 PM

[ NOTE: I started this post in the car and finished it the next day
at home, which is why it ends with a mention of Juliana's bath
time. –Tami ]

Another year is gone already? Didn't we just pack the Christmas decorations away from last year? And now we are doing it once again. This year has flown by faster than any year before!

I was just sitting here looking through my calendar for 2008 just to remember what all happened. More doctor appointments than I care to count, numerous speech therapy sessions, dance classes, soccer practice and games, summer camps, a few IEP meetings, a trip to Myrtle Beach, a trip to Chicago, several trips to the Miami, five surgeries, filming a new documentary, and a deployment. Did we really do all that? No wonder I can't remember this year.

Christmas morning was very peaceful at our house. We started a new family tradition for our kids. My aunt and uncle have been doing this for 16 years with their children, so I cannot take the credit for this idea, but I love it! We decided to only give the girls three gifts a piece, which represented the three gifts given to Jesus by the Wise Men. We want the girls to know the true meaning of Christmas and not be swallowed up by the commercialization of it.

We are on our way home from Miami as I type this. And just as soon as I started, Juliana woke up! Doesn't that just figure! She had surgery yesterday. Everything went perfectly. She now has the tissue from her back completely attached to her face. One end is near her left ear area, and the other end is now connected to create (sort of) her left cheek and half of her upper lip. It does not look exactly the way that we expected it to, but we should know by now not to know what to expect.

My best description is that it looks like a snorkel. The tissue is still rolled in a tube. The remainder of the process will happen throughout a couple of more procedures. During those procedures, Dr. Wolfe will be smoothing the tissue out to create a flat cheek. It is still very difficult for us to see the big picture. I guess that is why we leave the creativity to the professionals.

I'm hoping that Juliana will be returning to school next Tuesday when class is back in session. She has been home since early November. She really misses her friends and all of the ladies in her class (teacher, asst. teacher, interpreter, and nurse). It has been a long couple of months and we are ready for normal life to resume.

Okay, now for the announcement which has my heart bursting with joy … Are you ready for this? We will have a new addition in the Wetmore family!

No, it's not what you think. I am very done giving birth! We are in the process of adopting a beautiful little girl. She will fit in perfectly in our home. She too has Treacher-Collins Syndrome. Obviously her case is not nearly as complex as Juliana's. She does not even have a trach or a feeding tube. She will need hearing aid implants, but other than that it seems from her pictures that anything else will be merely cosmetic. We won't know for sure, of course, until we go to her country to meet her and finalize the adoption.

This is an international adoption, so the process takes much more time than a domestic one. The process is very slow and mainly consists of waiting on documents and other people—which is where we are now, just waiting on the Dept. of Homeland Security to complete their part of our paperwork.

I'm planning to have our dossier (paperwork) ready to be sent some time within the next few months. But, what I plan and what actually happens are often not the same thing. To answer the most asked question—"When will she be coming home?"—we don't know. We are hoping and praying for some time during 2009. Once I have the paperwork sent, we are at the mercy of her country's government.

This process has been in the works since last May, but was temporarily put on hold when Thom was gone and we were traveling back and forth to Miami several times for unplanned surgeries. We don't like for life to get too boring around here!

I suppose I had better end this now and get the mermaid (aka Juliana) out of the bathtub. When she recovers a bit more from this surgery, I will post new pics.

Happy New Year, everyone, and thanks for all your love and support!

—Tami

Time? What's That?
December 01, 2008 5:30 PM

I have started an update three other times this past week and was not able to finish any of them …

As Jeanne already told everyone, Juliana is home and recovering from another surgery. This one was fairly minor, considering the others that she has been through. Dr. Wolfe did a skin graft to cover the area on her face where the original procedure, done November 6, did not take. She is in quite a bit of discomfort right now. Her donor site is very tender and that makes it uncomfortable for her to sit and even walk.

This whole procedure of moving the tissue from her back to her face is proving to be a lot more than any of us bargained for. But, Dr. Wolfe informed me this past week that if we go about this slowly enough, we may get enough tissue for both sides. That would be so incredible if we did not have to put her through any more of this to do the right side.

As I write this now, I am reading over my last couple of posts and thinking about what has happened in the past four months. I am really not much of a planner. I like to just "see what happens." It seems that the few things that I did plan for during the past few months have not gone as planned anyway. Let me prove my point: I planned to get this update written while the house was quiet, but Kendra woke up at 6:30. Juliana just woke up and they are fighting already! …

Now it is 10 hours after I started; lets try again to get this finished:

Thom is scheduled to come home on Thursday. This has been a very long six months for all of us. I can't begin to imagine the fear that he went through while he was gone. It is always so much easier to deal with situations hands on rather than through the phone and internet. He left on deployment "planning" for this to be a quiet and uneventful six months. Why, after five and a half years with Juliana, are we still kidding ourselves about anything being "quiet and uneventful"? …

Okay, now it is the day after I began this post. I guess I better wrap this up otherwise it will never find its way on-line. I still have so much to say. I will start another update soon. No promises as to when it will be finished! We have a very exciting announcement to make, so I'll be back soon for that. My heart is bursting with joy and I can't wait to tell you all about it.

—Tami

Surgery Update and Other News
August 31, 2008 9:00 AM

I'm sure you have all been waiting for this! Juliana had surgery on Aug. 20 and she is recovering very well. However, she did not have the procedure that I had written about in my last update. We had made all of the necessary arrangements (hotel room for 2+ weeks, supplies ordered and packed for 2+ weeks, care for Kendra to keep her life "normal" for 2+ weeks), but Dr. Wolfe thought about the procedure more and decided to add an additional step into the process. He placed a tissue expander into her upper back area to help create more tissue for him to work with when he does finally do the other procedure. I was actually very relieved that he decided to do it this way.

The tissue expander is sort of like a balloon under her skin. Right now it is flat. She has a port (imagine it as a pin cushion) hanging out of her skin under her left arm. On September 14 we will begin injecting saline solution into the port twice a day. It is only 4 ml per injection. Not significant enough for her to notice each time, but will slowly fill the balloon to 250 ml (the size of a baby bottle). Once that is complete we will return to Miami and Dr. Wolfe will do the procedure that we had planned for this time.

She actually did get to go to school for the first day. I had really tossed the idea around, because I didn't want to tease her by letting her go one day and then not knowing when she would be returning. But I spoke with her teacher about it and we decided that it would be better for her to go on the first day so that she would know what to expect when she did return. And how on earth was I going to tell her that she could not go when we were taking Kendra anyway? She had chosen the" perfect" sneakers and the "perfect" backpack. She was ready! And she loved it. She is so ready to go back. I held her out all of last week, just to give her enough time to recover. But she will be returning on Tuesday when class is back in session.

The girls have been enjoying talking to Thom every day. They feel so connected to him during this deployment. We have Skype on the computers and they are able to see him every day. Kendra has it all figured out and she calls him whenever she wants to. Deployments now certainly are not like they used to be. I would wait for him to call once a week whenever he could. And we would send letters by snail mail. Being able to use Skype is really nice. I can send the girls in to call Daddy and I can actually get some work done without being the mediator all of the time. He can "enjoy" the arguing and tattling for a while!

They used to be so loving and kind to each other. What happened to that? They are at the tattling and fighting ages. Juliana is such an instigator, too. She will antagonize Kendra and then come and tell on her for something. I just tell them over and over, "I don't care, deal with it!"

Oh, I almost forgot to tell you about some very exciting news about Juliana. She has recently been able to start wearing her speaking valve on her trach. This is so exciting for us. The valve is one way, so she can take air in through it, but has to push the air out past her vocal cords. This enables her to "talk." Sometimes, it is awesome and sometimes, I just pluck it off when I want her to hush. When she has it on she is so loud! We have waited five years for this.

Hopefully I will have some funny stories to share next time. I will try to get some recent pics posted soon too.

—Tami

FIVE YEARS LATER!
March 22, 2009

Be sure to confirm by checking your local listings:

DISCOVERY HEALTH
Born Without a Face: 5 Years Later

March 22, 2009, 10:00 p.m. EST
March 23, 2009, 2:00 a.m. EST


[Thanks to Yvette]

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