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

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