A Poem

The following poem was sent to me via email in the summer of 1998.

If the world was blind,
maybe then we'd see
the true side of beauty,
deep within you and me.

No one could judge us
by our outer looks,
like the fancy covers
on expensive books.

We'd see with our hearts,
and not just our eyes,
and what we discover
might be a surprise.

There would be no need
to try to impress,
with the way we look,
or the way that we dress.

The only thing that would matter
is the way we would feel,
not phony or cheap,
but truthful and real.

(anonymous)

Reconstructive Surgery

Disclaimer

You MUST always discuss the risks of any reconstructive surgery with your surgeon doing the reconstructive surgery on you and/or your family member.

I have been thru many reconstructive surgeries over the years. I don't like to call myself an expert because I am not. But I've seen and experienced many things that many others have not.

Parents

I have met many parents of children with craniofacial anomalies thru the years. I am amazed at how much or how little they know about reconstructive surgeries. I think that it is great that there is so much information out there for parents. There was next to nothing when I was born.

When it comes to risks, I believe that parents know very little or information that is incorrect. Parents don't ask their healthcare providers enough questions about risks. I know the risks when it comes to having surgery. I know someone who has gotten the wrong blood during surgery and nearly died from it. I know three people who have died from complications from surgery. I take a risk every time I have surgery just like anyone else.

I think that parents are not fully prepared when it comes to seeing a child after surgery. But then again, what really prepares anyone for the sight of child whose features have changed so radically? My dad has told me how he nearly passed out after seeing me in ICU after my October 1978 surgery. My mom told me that she didn't recognize anything but my fingernails and eyes after that surgery.

I believe that some parents do not have realistic expectations of their children's surgical treatment. Some are very dramatic about their children going thru surgery. My parents were very realistic about their expectations. And I have never seen them get upset outwardly. I know they were nervous though like me.

I bet not many parents have seen the anguish of another's parent's face when something has gone wrong. Until she passed away, my mom can still recall the look on the stepdad of a child whose surgery had gone terribly wrong. That happened in October 1981.

Children, Teenagers, and Adults

I think that children whose parents cope better with the child's craniofacial anomaly and the subsequent reconstructive surgeries do better with the surgeries.

All children are nervous about having surgery. I get rather tired of hearing or reading about adults who share how horrible their experiences were. For many of those adults who go thru such horrible experiences, many opt to go thru more surgery. For one thing, things are so much different today then they were thirty-five years ago. Nowadays, hospitals do a lot to prepare children for surgeries, such as offering pre-op parties and tours of the hospitals. Before the 1970s, hospitals did not do that.

I think many teens and adults go into surgery with the idea that they are going to come out looking so much different. I think that many of them think that they are going to look like Miss America of Mr. America afterwards. Well it is not going to happen. Then they are disappointed afterwards because they had too high expectations. The more surgery one has on a particular area, such as the upper lip, the more scar tissue there will be.

I have not been too disappointed over surgery results. The only times I have been upset are when complications happened, such as when my columella pulled away twice in the 1980s. It was more frustrating than anything.

I notice that many adults want surgery as they get into their twenties, thirties, and later. For me, I am just ending my surgery road and have NO desire to have any more surgery. The only way, I would have anymore would be if I had a problem with a wire trying to work its way out.

Procedures

Not all procedures work all the time.

Cleft Palate Repair

In cleft palate repair surgery, there is a risk of a fistula forming in the palate after surgery. I think that it is a greater risk than everyone thinks. It is a known fact that some children will develop a fistula after surgery, even with all the care that is taken.
When bone grafting is done to the avoelar ridge (gumline), the graft does not always take. It might not take because cadaver bone is used (has a high risk of rejection by body), the age of the person, disobeying postop orders, or reabsorption of the bone by the body for some unknown reason.

Skull Reconstruction Surgery

In skull reconstructive surgery, there are many risks. There is the risk of brain damage (small but possible risk), infection (true with any surgery), and man-made bone or cadaver bone not taking (rejecting). There are two procedures widely used: traditional skull surgery (making an incision across the top of the head from ear to ear and peeling the skin back) and the endoscopic surgery (the use of endoscopy). Traditional is more widely used. Endoscopoc is really limited due to age of child (must be six months or younger).

Midface/Jaw Advancement Surgery

I think that going thru midface/jaw advancement is a once-in-a-lifetime experience. I had mine done when I was fourteen years old. And at age twenty, I was told that I needed done again. Both my parents and I agreed that I was not going thru it again. It had been too hard on all of us the first time. I knew someone who went thru it two times. The second time, her jaws were wired much longer than the first time. To this day, my bite is off one-half inch. It was an elective surgery the second time around for me and I chose not to do it again.

Distraction is used to bring the midface and jaw out without having to use bone grafts. During the procedure, the bones near the ear are broken. Then pins are inserted. For several weeks after the surgery, the pins are turned each day until the desired gap in the bones is reached. Eventually, new bone will grow. After the pins are turned, the device is left in place for several more weeks.

I think distraction used in craniofacial reconstruction is not a good idea. For one thing, the device that people who have it done must wear. Some devices look like a halo. I would not be a good candidate because I like to sleep on my side. Plus, great care must be done everyday to clean the pins that are attached to the device thru the skin. Distraction is not for everyone.

Some craniofacial surgeons still do the traditional jaw advancement, which involves bone grafting. Some surgeons do not wire the jaw shut even though they use bone grafting.

There are pros and cons to all three procedures, just like any surgery.

Anesthesia

I think that very few people think about the risks of going under general anesthesia even in the twenty-first century. I know that I will come out alive but I never know what is going to happen from the time I am put out until I wake up after surgery. Anything can happen.

Pictures

I think it is great for people to share before and after surgery pictures. That's why I have my pictures on the web.

Today's parents have advantages that my parents never had: The ability to see before and after pictures.

However, I don't agree with sharing pictures of children in the first day or two days recovering from surgery. I would not feel comfortable showing a child of mine pictures of a child in ICU with tubes. Besides, how many young children are allowed into ICU? You will never see any pictures of me within the first few days after surgery. You will only read my words about the experiences.

I am not against reconstructive surgery at all. I just think people need to look at each procedure very carefully. I just believe that people should not take any reconstructive surgery lightly.

Reconstructive Surgery for People with Down Symdrome

Please note: The opinions expressed here are solely mine. I would be more than happy to debate the issue in email. But I will not remove this page from my website.

Craniofacial reconstructive surgery is usually done to improve function, such as feeding, breathing, and seeing. Craniofacial reconstructive surgery is usually not done for cosmetic reasons alone. There are a handful of craniofacial surgeons doing reconstructive surgery on children with Down Syndrome. The reconstructive surgery for people with Down Syndrome is a controversial subject. I oppose reconstructive surgery for people with Down Syndrome because I find it totally UNNECESSARY.

"Skin Deep"

On Sunday, February 21, 1999, I watched a program called "Skin Deep" on the Discovery Channel. The program was about the parents deciding on reconstructive surgery for their son who has Down Syndrome.

A Brief Synopsis of the Program

The show began with the parents preparing for their son's surgery at their home in Paola, KS. During the show, the film crew interviewed a group of people with Down Syndrome and their parents about having reconstructive surgery. None of the people they spoke with would have the surgery. Then the parents and little boy drove down to Dallas TX for the surgery. Dr. Kenneth Salyer and his craniofacial team at Medical City did the surgery. (By the way, the surgery is not covered by insurance and costs approximately $17,000.) The parents and the child met with Dr. Salyer and his team the day before the surgery. The parents viewed computer images of their son before and after. The father really took in the imagery. The next morning the little boy had the surgery. They showed clips of Dr. Salyer and the team doing the surgery. The blow came when the parents went to recovery and saw their son for the first time after the surgery. The child had bandages covering most of his face and had blood on some of the dressings. The father was in shock. Then they showed the parents with the little boy in a hospital room later in the day. Dr. Salyer came to visit the parents and the little boy and spoke about the pain as if it were minimal. A couple of days after surgery, the father commented on how he was focusing on the computer images. About three months after the surgery, the parents and the little boy went back to Dallas for a followup appointment. There had been some scarring of the boy's eyelids so Dr. Salyer and his team did a quick procedure to reduce the scarring. The program ended with the family picnicking with family members and friends.

My Opinions of the Show

I found the program to be disturbing for several reasons:

1. The Parents

It was quite obvious that the parents were thinking of no one but themselves. It was quite clear that they did not accept their child's disability. The father kept wanting the child's face to look normal. They would go to any lengths. I like what what one of my friends said, "I feel bad for this sweet little boy having to grow up with them as his parents." Someone else said, "self-centered yahoos." Another friend suggested abuse. Why would parents want to put their child through something that is so unnecessary?? My answer: They were only thinking of themselves!! Very, very sad :-( The bottom line was they did not want to have a child who looked different. I wonder how they would cope with a child who had a craniofacial condition, such as arhinia??? I thank God for my parents every day of my life.

2. The Plastic Surgeon

I was utterly disgusted with the way Dr. Salyer described people with Down Syndrome. Remember this doctor is one of the first doctors in the United States to ever perform craniofacial reconstructive surgery. The plastic surgeon downplayed the whole surgery. I must say the best quote has been: "Does anyone know the difference between God and a plastic surgeon? God doesn't think He's a plastic surgeon." (The quote came off one of the listservs for individuals and families dealing with Down Syndrome.) I just don't get into the God complex from any doctor. Even my own plastic surgeon knows when enough is enough!! Thank God my plastic surgeon doesn't have the God complex. If he did, I would have been gone a long, long time ago.

Judging by the parents reaction in the recovery room leads me to believe that they were not fully prepared for how their son would look after surgery. I really feel that very few doctors prepare anyone for after surgery. In 1978, when I had my first Tessier surgery, my parents walked into ICU and nearly passed out after seeing me for the first time. They had no idea what I would look like after that surgery. Mom has always told me the only features she could recognize were my eyes and fingernails.

3. The Child

I did not like how the parents or Dr. Salyer did not direct anything towards the child. The child may have been three years old but must have had some degree of understanding. I have a friend who has a son who is two years old. Even tho her son is young, she still explains everything to him. I never heard the parents of the little boy talk about the surgery with him and what would happen to him. They were spending way too much time concentrating on how different he would look after the surgery. The parents should have waited until the child was older to include him in the decision-making process. I didn't care for the way Dr. Salyer told the parents how "We can do touchup surgery." Don't children have a say in their lives?? I wasn't too much older than the little boy when I was asking everyone questions about the hospital.

The child was beautiful before the surgery. Personally, I didn't see too much of a major change in his appearance after the surgery. No amount of surgery is going to take away the characteristics of Down Syndrome. Just like no amount of surgery will ever make me Miss America on the outside. But you know what?? I CONSIDER MYSELF TO BE A BEAUTIFUL PERSON INSIDE AND OUT!!!!!!!!!!!!!!!!!!!

4. Facial Anomalies

As someone with a facial anomaly, I personally took offense to how Dr. Salyer described children with Down Syndrome. To describe a child's facial characteristics as a "Mask of Deformity" is totally UNPROFESSIONAL. He referred to the face of a child with Down Syndrome as deformed. He is WRONG. The faces of children and adults with Down Syndrome are characteristic of the syndrome. There are many beautiful people with Down Syndrome. I hope that I never hear the phrase of "Mask of Deformity" again from the mouth of any plastic surgeon. It sounds like the plastic surgeon is doing a favor to anyone with a facial anomaly by reconstructing our faces. Does the surgeon think that he can magically make facial anomalies go away with his scalpel??? Someone said that she wishes she could be in the same room with Dr. Salyer and I for two minutes. If it would happen, this is all I would say: "It is what is on the inside that counts.. spoken from the mouth of my own plastic surgeon!!!!" Then I would turn and walk away.

My Ponderings

1. Doing Surgery on a Child with Mental Retardation

Most craniofacial surgeons don't do surgery on children with profound mental retardation since they would not benefit from the surgery. In fact, Dr. Tessier would not operate on a child with mental retardation unless he or she was high functioning, meaning that he or she could learn basic life skills. I have a friend with mental retardation who went thru some craniofacial reconstructive surgeries at the same time as I did. She is high functioning. She is able to live on her own with limited supervision. Her mom is a retired nurse who only put her thru the surgeries to save her sight, which she ended up losing after her near-death experience. When my friend nearly died after her surgery in the early 1980s. her mom said no more reconstructive surgery. My parents and I met several other children and adults with mental retardation who went thru craniofacial reconstructive surgeries. They were high functioning. Sometimes craniofacial reonstructive surgery is necessary in certain cases of craniosynostosis. I met a little girl who was born with Pfeiffer Syndrome (cloverleaf skull). She was blind and deaf and had a tracheostomy. I think that she had some degree of mental retardation. Dr. Tessier had to rebuild her skull.

2. Putting a Child through Unnecessary Reconstructive Surgery

Craniofacial reconstructive surgery is hellish for functional purposes. But putting a child thru it for the sole purpose of cosmetic is unthinkable. There is nothing wrong with the appearance of child or adult with Down Syndrome!! Parents don't want their children teased. But, the fact is ALL children get teased whether they have distinct facial features or not. If the child wants the surgery, the parents should wait until the child is old enough to be involved in the decision-making process.

My Views

You may or may not choose to agree with my views. That's fine. Please do NOT email me with your opinions. Please do NOT email me to remove the opinions expressed within this blog. Everyone has a right to express his or her opinions. This is where I express mine.

Waiting for Surgery

Please note: Any comments made here about my former PS are not a slam.. He is a great man. I would just get frustrated over waiting for surgery, especially when it was expected. I wouldn't have changed PS' for anything. I liked my PS a whole lot because he does a lot of great things for people. It's just feelings I dealt with at that time in my life. BTW, my PS really did understand me.

This was written when I was waiting for my surgery in January 1999 to be scheduled.

It seemed like every time I turned around that I was playing the waiting game. It can be very hard emotionally. If you have never played it, you will not understand it at all. But I will try to explain it as best I can.

Between March 1997 and January 1999, I played the waiting game with my life. I sat thru six months of waiting to have my surgery in September 1997. Then there was a 13-day delay. (I think the surgery date for that ended up being changed four times. LOL) I thought that I would be home free without any surgeries for awhile. Then in November 1997, PS tells me that he is considering opening up my nostrils more. (I had someone tell me that I shouldn't bother since the surgery would be only for looks, blah, blah. Geez that surgery made a difference in my speech. I am glad I went for it!!) When I went back to see PS in early February 1998, he schedules me for surgery in April 1998. (Actually I chose the date. LOL)

I had known about the January 1999 surgery since the night of my surgery in April 1998 because my mom told me that PS couldn't do everything he planned. I accepted that. I would rather my PS not do too much than have something fail because he did too much. At first, I was first told that I was going to have the surgery three months later. Then I went in for a follow-up appt. in May 1998. At that time, PS decided that he wanted to wait six months before he did anymore surgery. OK I dealt with that. I spent the summer doing online stuff and bowling. I went back on Sept. 1, 1998. At that appt., he told me that he wanted to wait and see how I do with beginning of the weaning from the nasal tubes. Well I've been there done that deal and I can tell you what will happen. All the surgery to open up my nostrils will be done for nothing. Everything will start closing up. I looked at him and said that I knew what was going to happen. I KNOW MY BODY. (And yes, I did say that to him.) Then he gave me some line about my cleft being worse on the right side. Hello was I not born without a nose??? (I really need to remind him of that. ) I am sitting there thinking: It's because of the way the flap for the columella was tunneled under my right nostril. Gee he was there. Now I wish I would have said something. :: SIGH :: I know more about my condition than any doctor does. Good thing I don't accept everything any doctor tells me because I would be up a creek without a paddle. No doctor knows everything.

I had a burning question to ask my PS when I saw him in October 1998. My question to him: Why was he so hesitant about doing my columella reconstruction? Was he afraid that I might be pissed if it didn't work?? I love the saying, "You won't know until you try." Been there done that at least two times in my life.

I am the one who made the choice to finish my reconstruction and I knew that I have to live with my decision. I certainly didn't like the waiting game. I accepted it even tho it was very frustrating and hard at times. I got over one hump and then another one would come along. I don't regret going thru the last three surgeries. They definitely made a difference. I just felt like the most critical part of my reconstruction at that point was eluding me!!! It was like.. I had waited forever for this surgery. I never dreamed that that part of it would be dragged out over this many years. (I had been waiting for nearly seven years to have the next stage of my columella reconstruction.) My patience was running thin.

I had used the stents since May 20, 1996. I played by the rules. I had the tubes out of my nose for a total of 61 days between May 20, 1996 and October 30, 1998. I thought about having the tubes bronzed.

I really liked my former PS. I tried to be patient but it was sooo hard sometimes. I completely understood that the surgery had a risk. I knew that there was a ten-percent chance of it not working because my PS told me. Back in November 1997, my PS told me that he would not do it for another year. (You should have seen the look on my face back then. ) I guess I was just wanting to get the surgery done and over with.

I was hoping to get a possible surgery date in October 1998. But I did not.

In October 1998, I finally found the root to my problem. I was feeling resentment and anger because of being given timelines all the time. It was very hard for me to deal with timelines for surgeries. I am going to talk to PS about this.

1998

Sun., Oct. 25, 1998

It's been almost two weeks since my last visit with my PS. I have to wait a little bit longer. He wants to see me in early Dec. I actually go back on Dec. 8th. I was disappointed at first. But now I am OK with waiting. This is something that cannot be rushed into. PS and I talked about the wait. He wants NO pressure on the columella after surgery. The slightest pressure could sever the blood supply to my columella. Now that would be hard to deal with because that would mean starting at square one again.

Thurs., Nov. 5, 1998

I am dealing with the waiting just fine. I understand the reasons for the wait. It is simple.. My PS does not want to rush into it. I think that my PS is wise for waiting. I do hope that he can give me an idea of when he wants to do the surgery when I go back to see him in Dec. I wish more people had the kind of PS I do.

Sun., Nov. 29, 1998

I am down to about nine more days of waiting to see when PS might do next round of surgery. I've been stent-free for just about a month now. The nostrils haven't closed up too much. I think that I breathe out of my nose now than I have in a long time.

Wed., Dec. 30, 1998

The wait is nearly over. I finally got my surgery date when I went and saw my PS on Dec. 8th. The surgery is scheduled for Tues., Jan. 12th. I've been OK with the wait. My greatest worry is getting the approval from my HMO to use St. Luke's. I hope to hear something soon.

1999

Thurs., Feb. 11, 1999

The wait was well worth it!!!!! I ended up having a successful reconstructive surgery on Tues., Jan. 12, 1999. I may have been mad at my PS back in Sept. and Oct. but now I am not. I am very happy with the results of the surgery. Now I just wait for the final round and I am no hurry to do it since it will be minor in comparison to what I've been thru in the last three years and the preceeding years.

2000

Sun., April 16, 2000

There will not be a final round of surgery. I've decided that enough is enough and that I am happy with things the way things are. Why mess with perfection?? NO MORE WAITING FOR SURGERIES!! YAY!!!

Using Nasal Stents

I used nasal stents off and on for twelve years. I consider myself an expert on nasal stents because I used them for soo long. Nasal stents have evolved over the years.

My Thoughts and Feelings

The stents bothered everyone else. I didn't have a problem with them most of the time. They were noticeable. Because the tubes were noticeable, some people did stare. I got stares from both adults and children. Adults would ask me about my stents. Sometimes kids would ask questions. I even got questions from doctors and nurses about my stents.

People asked me if it hurts to have the stents in my nose. They did not bother me at all. For one thing, they only went to the beginning of the nasal passage. And I have very little feeling in my nose.

When I was weaned off them, it was a feeling that I wasn't be able to describe. The stents had become a part of me for soo long. The times that I had gone without them, I had felt a little naked. But it was nice not to have to use them anymore. :-)

My Experiences

I started using nasal stents back in January 1979. I had to go to the OR to have them placed in each of my nostrils then. My nose was so big that my nostrils contracted. It was a battle for over a year to change the tubes. In fact, my dad had to put them back in with me laying on the floor. It was not always pleasant. As time went on the tubes got easier to take in and out. The kind I used back then were short hard clear plastic tubes. The sizes were adjusted periodically. I used these tubes until my surgery in Oct. 1987. Then I got a reprieve from nasal tubes until Feb. 1992.

In Feb. 1992, I received white soft plastic custom made tubes. They were the most expensive ones too. They were short with holes for ventilation. The right tube stuck to my columella and would make it bleed from time to time. I stopped using the tubes in 1995. It didn't take long for my nostrils to start closing up.

In May 1996, I had surgery to open up my nostirls again. I started using longer tubes.

In August 1996, I was vacationing in southern California with my mom. We were on a boat ride from Long Beach CA to Catalina Island CA. On the boat ride, I was videotaping from the boat's railing. My tubes were loose. Guess what? My tubes fell out of my nose and into the ocean. LOL LOL Everyone was panicking. The whole thing was caught on video. LOL There was nothing we could do until the next day. The next morning, we had to make a call to my middle sister-in-law who called my PS' office and told them what happened. My PS' office FedEx new tubes to me. I received them the following day.

My Tubes before my April 1998 Surgery

My Tubes after my April 1998 Surgery

The Wean

On Sept. 1, 1998, PS told me that he wanted me to start weaning myself off the tubes beginning Oct. 1st. Guess what?? I have started to some small degree.

The sad thing out of all of the wean: I knew that it was NOT going to work. There was nothing supporting my columella. The wean was tried in September and October 1997 but it failed. I just want to have the surgery to rebuild my columella. I've been waiting for this surgery since 1992.

I have been taking out the tubes for up to an hour at a time with no problems.

Wed., Sept. 30, 1998

Tomorrow is the first official day of the beginning of the wean. I have been working on weaning off and on. Sometimes I forget to pull my tubes out. Yesterday I got busy updating my main homepage and forgot to pull the tubes out for an hour or so.

It's a weird feeling when I put the tubes back in because things feel tight. I am afraid that if I say this to PS because I am afraid that I will have to wait even longer to have my surgery. I know in my heart the wean is NOT going to work. It's been tried before and has not worked. It won't work as long as there's nothing to support my columella. Been there done that.

I think that I am going to have my nasal tubes bronzed. HA HA It will be my reward for having to use them for sooo long. :-)

Thurs., Oct. 8, 1998

The wean is going well. I have been doing it for a week now. On Oct. 1st, I had the tubes out for six to seven hours. Now I am up to twelve hours a day without the tubes!! When I put the tubes back in after they've been out for twelve hours, I have NO problem getting them back in.

Mon., Oct. 12, 1998

I had the tubes out for seventeen hours today!! And no problem getting them back in at all!!

The week of Mon., Oct 19, 1998

I left the tubes out for over 30 hours and had no problem getting them back in!!

I think the wean is going to work this time!!

Sun., Oct. 25, 1998

On Nov. 1st, I will start going without the tubes at all. By the time, I have the surgery, PS wants nothing to keep the nostrils open. He does NOT want any pressure on the newly-rebuilt columella. The blood supply is weak now and the surgery could weaken it more. Both PS and I know what could happen.

Thurs., Nov. 5, 1998

I've been without the tubes for about a week. The wean seems to be going well. Keep your fingers crossed. :-)

Thurs., Nov. 12, 1998

I've been without the stents for just about two weeks. I do notice some closure. :-( But I know why that is happening. It's because the columella is not strong enough to keep the nostrils opened. The only way that I will have permanent opening of the nostrils is if my columella is made stronger.

Wed., Dec. 30, 1998

I can't believe that the wean worked. I was so wrong. I thought the wean wouldn't work but it did. I've been without the tubes for two months. I am so glad to be rid of them!!!!

Thurs., Feb. 11, 1999

I've been tube-free for almost 3 1/2 months and it feels soooo good to be without the tubes!!!!! I am nearly one-month postop.

Sun., Aug. 29, 1999

I've been tube-free for almost a year. I am very use to being without the tubes. it is such a great feeling not to have anything coming out of my nose. :-) I hope that I never have to deal with them again. I think that I have had to deal them longer than anyone else.

Fri., Nov. 26, 1999

I've been tube-free for over a year now. I have noticed some contracture but that is to be expected. There is nothing that can be really done about the contracture.

Undergoing Surgeries

I haven't met many people who has been thru as much craniofacial reconstructive surgery as me. I have met people who've had twenty to twenty-five reconstructive surgeries. But those people had the biggest majority of their surgery before eighteen (18) years of age. I've undergone thirty-seven (37) surgeries in a thirty-four year period so far.

My Feelings

Fear

When I was young, I was soo afraid. I didn't like being held down. I didn't like needles. I didn't like too many things associated with having surgeries and being in the hospital.

The year before my big surgery in the fall of 1978, I was soo afraid. I didn't know what was going to happen to me during and after surgery. I was scared at the thought of having my jaws wired for a period of time. I would lie in my bed at night practicing not being able to open my mouth.

I do have a deep fear of dying because of the surgeries. Seeing people die or nearly die makes me wonder at times. It scares me.

Anger

I admit that I felt angry about having surgery at times when I was younger. I have made a lot of sacrifices with my surgeries. The deaths and near-deaths made me angry.

I would get angry when I was told about things after they happened or if they were going to happen.

Sadness

My sadness about surgeries have been because of the deaths and near-deaths.

Frustration

Probably the feeling I have experienced most. I have felt that I was in a tunnel. I felt that I was never going to see the end to my surgeries. Now I am starting to see daylight at the end of the tunnel. I know that I am almost to the end of my reconstruction.

Peace

I have found soo much peace in recent years. It helps that I have a fantastic PS to work with. It's not that I didn't like the other two PS', it was just all the emotions surrounding the surgeries in the late 1970s and throughout all of the 1980s.

Some Miscellaneous Thoughts and Feelings

I am able to cope with my surgeries these days. I attribute it to being able to work thru the issues surrounding my surgeries and having the ability to find what works and doesn't work for me.

Invalidation

It is a real slap in the face when people try to invalidate my feelings and experiences. But I know why they do it because they don't have a clue as to what I've been thru or how I deal with my surgeries.

Here are examples of how people have invalidated my feelings and experiences:

Comparing surgeries and experiences - I don't get into that game because we all have our own feelings and experiences. About two years ago, I had someone who I thought was my friend tell me that my surgeries were less important. I had another person who I thought was my friend tell me that I hadn't been thru that much surgery. (This was told to me about a week after my surgery in Sept. 1997.)

Support - I like it when people wish me good luck with my surgeries and put me in their prayers and thoughts. Some people will even eat pizza with me the night before my surgery. I've had people tell me that I really don't need any support because I've been thru it too many times. That's BS.

My vast experience - Just because I have many experiences with surgeries, does not mean that I am not human. I have some people who love to use this phrase "You are such an old pro at this." Do you know how much I hate that expression?? I have feelings that I go thru and deal with whenever I have surgery.

1998

Sun., July 19, 1998

I had someone say this to me: Your voice sounds less nasal but your nose looks bigger. How insulting!! I had surgery back in April. And yes, I know I have to have a revision in the next round.

I wish people wouldn't say anything at all if they are going to be insulting or insensitive.

Thurs., Sept. 17, 1998

I am rapidly approaching the 20th anniversary of my first Tessier surgery. I never dreamed of still going thru my reconstructive surgery at this stage of my life. I sometimes wonder if it will ever end. It's disgusting to think that I am 34 years old and am looking at another reconstructive surgery. Who knows when I will have this last surgery?? Sometimes I just feel like screaming or crying just to get my feelings out of my system. I am just totally frustrated at this point.

Mon., Sept. 21, 1998

I have to laugh when people blame things on surgeries. It's dumb!!!! I get frustrated with people like that. I once had a mother tell a friend that I resigned from a group because of the effects of anesthesia (I had just had surgery three days before.) I had a VERY good laugh over that. It just amazes me how dumb people can be when it comes to surgeries.

Sun., Sept. 27, 1998

As I wait for my next round of surgery to be scheduled, I have a feeling that the surgery isn't going to happen until December. It takes forever for me to get an approval from my HMO. I figure it won't happen until at least Dec. And the idea of having surgery so near the holidays doesn't please me at all.

Mon., Sept. 28, 1998

I think that out of all the times I've had surgery, I've had surgery in every month of the year. I've had at least one surgery in all twelve months. October is the month that I've probably had the most surgeries. My least favorite holiday is Halloween because I spent many Halloweens in the hospital. October is the hardest month for me. I feel the usual wave of depression coming on that I get when the month of October rolls around. By the time the holidays roll around, I am A-OK. I love Christmas. I can't stand fall and winter anyway.. too depressing. Give me spring and summer!!

Wed., Oct. 7, 1998

I have made a decision that only one person knows both online and offline.. Barring any complications, I've decided that this next round of surgery will be my last. I am turning 35 in June and the turn of the century is a little more than a year away. I don't want to be going thru any reconstructive surgery after the turn of the century.

Sun., Oct. 25, 1998

I can deal with having another surgery. It will be interesting to see what comes first.. Employment or surgery. If employment comes first, I will put off the surgery for awhile.

I am coming to a major crossroads.. I am seriously thinking of getting employment first since finances are getting low. It's nice not to have had to work while going thru the surgeries but now the time has come to say.. Whatever happens happens.

Thurs., Nov. 5, 1998

I am a little more than a month away from finding out when my next surgery might be. I am hoping this will be it.

Wed., Dec. 30, 1998

I found out on Tues., Dec. 8th when my surgery will be.. Tues., Jan. 12th. It looks like the last planned reconstruction!!! YIPPEE!!!!!!!!

1999

Thurs., Feb. 11, 1999

I am almost one month past my latest reconstructive surgery. I am very happy with the results. :-) But I am not done yet.. I've got one minor procedure to go thru sometime in the next several months. I am not in any hurry to get it done. I am holding off on my party til I get that one done as it SHOULD be the last planned reconstructive surgery.

Sun., Aug. 29, 1999

I have been giving some major thought over the last few months about any future surgeries. Part of me wants to forego anymore surgery. I think about my age.. 35.. and wonder why am I still going thru surgeries at my age. I really don't find any touchup surgery necessary. I have foregone some parts of my reconstruction for various reasons. I think that I am just really sick of it at this point. I really want to move on with the rest of my life and not worry about any reconstructive surgery. I am happy with what I've got. Besides I want to have my IT'S OVER party next summer. LOL I hope that I get released this year!!!!!!!!!!!!!! It will be the strangest and most wonderful feeling in the world.

2000

Sun., April 16, 2000

I have decided to have NO more surgeries. I am getting too old to go thru anymore surgery. I am also thinking of my parents who are getting older as well. Plus when I got the job at TA in March 1999, I discovered that people would hire me on my abilities. not my disabilities. Besides I feel very comfortable with myself. I do NOT close the door on the possibility of something happening that I require reconstructive surgery later on tho.

Living with a Facial Anomaly

1998

Thurs., June 25, 1998

I have done a little research on arhinia in the past year. There's not much information out there on arhinia because it is rare. One of the things that shocked me was the mortality rate in the article I read on arhinia. The authors had taken twelve cases of arhinia from the medical literature. Four of the people with arhinia had died.

I feel blessed to have been born with arhinia for the following reasons:

I have a wonderful, caring, and supportive family.

I have friends who see me for who I am, not what I am.

I see the world from a unique perspective.

I feel good about myself most of the time. I have my good days and bad days like everyone else. I try to maintain a positive attitude. Sometimes that can be real hard at times, especially when I am going thru a rough period. I prefer to be around people with positive attitudes so I can maintain my own positive attitude.

At times, I find that some people are intimidated by my appearance. I find that most people are accepting. Those who reject me just don't become a part of my life and do not to get to know me as a person.

I've always felt a part of the world. I've accomplished many things in my lifetime. I went to public school. I had good grades in school. I've had a paying job. Right now I am not working but that will change in the next several months. The only things I haven't accomplished yet is finding Mr. Right and having children. My feelings on having a relationship and children: If they happen, they happen. If they don't, they don't.

I don't have any bitterness or anger about being born with arhinia. To me, having been born without a nose and all the other anomalies has been no big deal. They are just one small part of me. I can think of things that are much worse. I could be dead is the worst thing.

When I was twenty-three (23) years old, someone asked me how I used to my disabilities. My answer: I know that they are there. As I think back on it now, my answer should have been: My craniofacial anomalies and disabilities are just a small part of me. I know how to deal and compensate for them.

It's amazing that some people think that they are experts about my condition just because they have met people with arhinia. And they are people who don't live with arhinia. I do. With the research I've done on arhinia, I am more knowledgeable about arhinia than I've ever been.

Sun., July 19, 1998

I've decided to expand my homepage to include other craniofacial anomailies because I want to educate others.

I look at life like this: Things could be worse. People don't like it when I say that. I am not one to dwell on my own problems all the time. Things could have been a whole lot worse for me: I could be dead. I could have had mental retardation. I learned this from all the research I have done on arhinia. I've also seen things over the years that have made me feel lucky. Many of the things I saw and heard while I was in the hospital. Some of the things I witnessed as a volunteer. Some of the things I saw when I was working. Some I've just seen in life.

Thurs., Sept. 17, 1998

Dumb Things People Have Said to Me

You would be amazed at all the dumb things that have ever been said to me. It is just because of people's ignorance about arhinia.

1. I have actually had people come up and ask me if my nose was real.

2. I have actually had people think that my nose was non-functioning. (These people claimed to know soo much about arhinia. - NOT.)

Sun., Oct. 25, 1998

The Internet is great because one can connect with others who are going thru something similar. It's because of the Internet that I have been able to link up with people who have or know someone with arhinia.

1999

Fri., July 16, 1999

Some days I just want to gag with the crap I read online. Gesh I think how vain many people are about their appearance. I look at myself anf think "I got a major craniofacial anomaly and I am not worried about my looks!!" I guess I deal with my anomaly better than most. Maybe it is because of what I've learned that people look at what is on the inside.

It really irks me when people blame their problems on their craniofacial anomaly. I want to scream, "IT IS YOU BECAUSE YOU CAN'T DEAL WITH YOUR ANOMALY!!!" I really believe that people can pick up on others' attitudes.

Sun., Aug. 29, 1999

I can't believe some of the junk people on the message boards post about craniofacial anomalies. I read posts about how parents worry about their kids get teased and the kid is not even school age. Simple solution: Take the time to EDUCATE OTHERS. The simple fact is: ALL KIDS GET TEASED!!

I can't stand when people with less amount of surgeries than me say how traumatic their surgeries are/were. This pisses me off more than anything. It also makes me laugh because some people say the trauma from their surgeries causes PTSS. I have to laugh and cringe every time I see that. And I think too many parents believe what they read online.

I don't consider myself a survivor.. I still deal with a craniofacial anomaly every day.

I don't consider having a craniofacial anomaly a tragedy or being something special. I have always wanted to be treated like everyone else.

Fri., Nov. 26, 1999

Ignorance is still alive and well here in late 1999.

I actually had someone email me and ask me what my nose was made out.. The answer for anyone who wants to know: Skin, cartilage, and bone from my own body and wire that holds the bone in place. I do not have a prosthetic nose.

I had another email asking me why my website includes other craniofacial anomalies. Now that is truly ignorant.

2000

Sat., April 15, 2000

I have made some changes in my life. I don't participate any craniofacial anomalies support groups anymore. I was finding that the sites were making me angry. And that was not good. I really felt that the groups were holding me back. Plus I was tired of being bashed for having a positive attitude. I think that a lot of groups like to focus on the negative side. I am soo glad that I have a family that has focused on the positive side of things, even though it has not always been easy.

I really understand what it means to have support. The only people who are really there for me are my family and friends (who don't have craniofacial anomalies).

2001

Sun., Oct. 21, 2001

I still stay away from craniofacial anomalies support groups for the most part. There's one that I post from time to time in.. just because the people there irritate me with their whining. I like to show people that there is more to life than someone whining about something that happened to them years and years ago. Isn't it time to move on, folks?? I look at myself and think, "If I can do it, so can you." No one ever said that life was going to be easy.

I think of my own facial anomaly as a non-issue in my life..

.

My Thoughts and Feelings

This area is for me to express my thoughts and feelings.

My Expressions

This is where I express my thoughts and feelings as well as my views.

The Recovery

January 1999

Wed., Jan. 13, 1999

I am home and online already. No surprise there. LOL The day was uneventful. I had an omlete and cinnamon toast for lunch. I just kind of hung out online. I took a 3 1/2-hour nap from about 4:00 PM til 7:30 PM. I ate chili for dinner. I love my mom's chili. I worked a little on my prep page since I had not updated it since late December. I stayed up til about 4:40 AM.

Thurs., Jan. 14, 1999

I got up at 7:30 AM. I worked on my surgery page some. I should have it up soon. Nothing real spectacular happened today. My mom's birthmom sent me a really beautiful plant. I fell asleep at 6:30 PM and slept til 2:30 AM. I woke up at 11 PM long enough to take my antibiotic and turn off the light.

Fri., Jan. 15, 1999

When I got up at 2:30 AM, I went thru my mail. I found out that my friend Nancy's son, David, has to have eye surgery AGAIN. He had a retina detachment back in December. Now he has a tear in his retina. :-( He will be scheduled for surgery in the next few days. I am soooo bummed for them. :-( I finally got my surgery page done and uploaded. Now I just have to work on the recovery page.

It was too funny.. I got my referral for my surgery TODAY. A little late. LOL I do have to speak to Brenda and Deloris about it because they approved it as day surgery and not an overnighter. Go figure!!!!!

I slept a lot today.. I fell asleep before 12:30 PM. Mom came down and woke me up at 3:20 PM to keep an eye on Kayla while she ran to the dentist. I got up and took my antibiotic and laid on the couch upstairs. As soon as she came home, I came downstaris and slept for another 3 1/2 hours. LOL I am making up for all the sleep I lost before my surgery.

Sat., Jan. 16, 1999

I was up until 2:30 PM today. Before I went to bed, I worked on some graphics. It is soo much fun working on graphics without my glasses. LOL My mom went to the outlet mall in Osage Beach with my oldest sister-in-law. I still have the rash behind my ear.

Sun., Jan. 17, 1999

I went to bed at 2:30 PM Sat. and woke up at 12:45 AM. What great sleeping hours. LOL LOL Someday I will get on the right track.

I've been working on graphics like mad.. My copy of BladePro expires today. LOL

My CD player broke. :-(

I talked to a friend of mine about my rash. She thinks it MIGHT be a reaction to latex. I will definitely talk to my PS about it. I did some research on latex allergies and discovered I am at a high risk for them since I've had multiple surgeries.

I started wearing my glasses some. The ear piece does not rest on the stitches at all. Now I have to get used to wearing my glasses again.

I went to bed at 10:30 PM.

Mon., Jan. 18, 1999

I woke up at 4:30 AM and stayed up all day. I worked on pages. I wore my glasses off and on all day. I skipped bowling because of the stitches in my ear and didn't feel I could wear my glasses all that long. I fell asleep at a little after 7:00 PM. I was tired.

Tues., Jan. 19, 1999

I woke up at about 4:20 AM. I chatted on ICQ with a friend for a bit. I then got ready to go to the doctor.

I got there and he had been called to assist with a surgery. LOL So I sat and talked with Brenda and Toni for over an hour while waiting for PS to come up from surgery. I showed Brenda the referral that I received last Friday.. She will pass it on to Deloris. We talked about everything from referrals (which I need to update BADLY). When PS came up at a little after 11:30 AM, he took a look and told me that it looked good despite what he had to work with. It is a b**** when you have sooo much scar tissue. Tony took the stitches out of my post. The ones behind my ear are dissolving ones.

I do have to have a minor procedure down the road.. Just a MINOR one.. It will actually be a touch up surgery. Then that should be it. The only thing is.. My reconstruction won't be done before my 35th birthday but I am hoping it is done before the end of the year.

I am excited because I am free to look for work now. I am not going to worry about that minor procedure too much because it won't amount to too much.

My dad let me use his CC to order BladePro. Now I have BladePro. It is an awesome plugin for PSP!!!

I wore my glasses pretty much all day.

I went to bed early around 10 PM.

Wed., Jan. 20, 1999

I woke up early again. I finally finished my course of antibiotics!! YAY :-) I worked on pages again. I went to bed early.

Thurs., Jan. 21, 1999

I woke up early. I finally finished the family pages. YAY :-) I had a major attack of diarrhea about 5:00 PM. :-( And I did not feel good all day long. ER was a repeat. :-( I went to bed early.

Fri., Jan. 22, 1999

I woke up early.. I am getting more and more of my pages finished. It is a slow process rebuilding the pages. I popped the rest of the stitches out of nose.. Didn't hurt anything.

Sat., Jan. 23, 1999

Today I went out in public for the first time since my surgery. It felt good to get out. I went to Best Buy to get something with the gift card I had received in December. I got a cool program with all kinds of clipart.

I registered with job service online. My resume is up on their website. I think that I am going to go in person to one of the offices.

Sun., Jan. 24, 1999

Another day spent online. :-) I am trying to get my pages done. I went to bed early again.

Mon., Jan. 25, 1999

I just kind of hung out all day. I went bowling but didn't do all that well. :-( I am out of practice. Next week is another week. :-) F., my friend who had GB surgery six days before my surgery, was there. We compared experiences. :-) I hope she is able to return to the team soon. :-) I fell asleep after 11 PM.

Tues., Jan. 26, 1999

I got up at 7:30 AM and worked on pages. Emily, Laura's daughter, had her lip revision today. It went well. Laura pulled a good one on me tonight. LOL LOL She had me all freaked out about Em's revision. LOL LOL I went to bed later than usual. I was helping Nancy get the ring code for my webring on her page.

Wed., Jan. 27, 1999

I woke up at 8:45 AM. I worked a bit on pages. I've decided once I get the pages all updated that I am not doing any major renovations for quite sometime. I was messing around with the clock on my pc.. I discovered why the time was off on my email!! I was set for mountain time instead of central time. LOL It has been like that since my crash last February. LOL I went to bed at 11 PM and fell asleep by 11:40 PM.

Thurs., Jan. 28, 1999

I woke up at 8:30 AM today. I didn't do much but work on pages a bit. I think that I am kind of getting burnt out on pagebuilding. I finally got this journal caught up. :-)

February 1999

Mon., Feb. 1, 1999

I called Brenda today to confirm meeting with PS. She laughed because I was the second person to call about an appt. for tomorrow.

Tues., Feb. 2, 1999

I got to show off my page today. :-) I showed Brenda and she was like WOW. Too bad Deloris was sick. Most of my Arhinia and Other Craniofacial Anomalies page will be part of the sie that I am doing for my PS.

I found out some interesting news... First of all, PS' wife is pregnant. They are expecting their third child in August. Just remind me not to schedule my touchup until after the baby is born. LOL When I got home, I told my mom and she already knew!!! She found out the day of my surgery. LOL She thought I knew. LOL

Some more interesting news... I found out for sure that I was the first person in the Kansas City to have craniofacial reconstructive surgery. It is interesting that the PS who created the program I am part of now established the first craniofacial program in the early 1980s at another hospital here in Kansas City. The program I am part of is the largest cleft/craniofacial program in the Kansas City area. There are three in the area.

Sun., Feb. 21, 1999

I watched two interesting programs on The Discovery Channel this evening. One was on the show "Nature of Things" and the titled of the program was called "Restoring Faces: The Plastic Surgery Miracle." The program featured several children and adults with craniofacial anomalies. There were interviews with several plastic surgeons who specialize in craniofacial surgery. It was a good show overall but it should have looked at the history of craniofacial surgery. I did disagree with the psychiatrists of one of the craniofacial teams tho.

The other show I watched was called "Skin Deep." It was about the parents of a little boy with Down Syndrome who decided to put him thru reconstructive surgery. The show bothered me soo much that I had to build a page about it.

March 1999

Wed., March 10, 1999

It has been a long time since I added a journal entry. My nose seems to be healing from the January surgery. My latest fear is a possible hardware problem on the inside of my chin. I have had a bump down inside since the end of January. I am thinking it is a wire but will ask PS for sure when I go in for follow-up appointment on March 23rd. I hope it isn't a wire.

April 1999

Sat., April 3, 1999

I went to see my PS on Tues., March 23, 1999. Everything is looking great!. :-) The bump in the inside of my mouth near my chin is nothing.. just bone. My PS still wishes he could have done more but there would be too much to lose if he did. I am happy with things as they are. :-) I don't go back to see him for six months. :-)

Epilogue

Sun., April 9, 2000

I didn't go back for my six-month follow-up. I've decided that I don't want anymore reconstructive surgery done. I am happy with the way things are.

The Surgery and Hospitalization

Please excuse the typos.. I had to write this page without my glasses.

The main topic was getting my PS for being online so late the night before my surgery and meeting others who have AOL. LOL

Tuesday, January 12, 1999

I woke up at 4:00 AM but laid in bed til after 4:30 AM. I got up and listened to my stereo. I got dressed.. I wore my pink sweats. I wrote a quick email to my friends on CN. Then I sat and listened to a couple of mnore songs. I headed upstairs and brushed my teeth. (I can't stand brushing my teeth with a dry mouth. LOL)

My parents and I left the house at a little after 5:30 AM.

We got to the hospital right at 6:00 AM. I went to the registration desk and she told me to have a seat. (The receptionist there knows me by name. LOL)

She called my name about 6:15 AM or so. She put the nice little hospital band on me and made a copy of my insurance card.

Then I waited for the lab to call my name. I didn't have time to go to Kaiser beforehand because the approval came so late. The lab tech who drew my blood lives right down the street. LOL LOL She took blood from my left arm. Only took one stick. (But I noticed that I have a bruise.) I went back and sat in the waiting area.

It wasn't too long before someone from Preop called my name. We went down to A Level where Preop is. She had us go into the surgery waiting room to wait. Then Carol from Preop called me back. She remembered me from before. LOL My mom amd I went back to Preop Admitting. The nurse did the usual assessment (asking the standard questions and doing vitals). It was time to change into a hospital gown and robe for the walk down to holding. She listened to my heart and lungs. Then we headed off to holding. Because twelve other people were having surgery that morning, only my mom could come into holding. I had to say Good-bye to my dad in the surgery waiting room.

Carol took my mom and I to holding. Actually I ended up in the overflow (Recovery) because of soo many other people having surgery that morning.

By this time it is around 7 AM. It was freezing in Recovery. The nurse brought me a couple of blankets from the warmer. Heat felt so good. LOL LOL Deloris came down about 7:30 AM. She talked with Mom and I for awhile. The lady in the bed next to mine was having her appendix taken out.

There was an observer for my surgery. A friend of my PS' who is considering going into medicine. He is 34 and is an air traffic controller and is considering entering medical school. Of course they had to get my permission for him to observe the surgery. (He will be 45 by the time he gets thru med school and training.) He is on AOL too. LOL

We talked about a lot of things.. anti-nausea meds (They usually give me three kinds. LOL Deloris would not let them give me one of them that they gave me last time because it made me too sleepy. LOL) We chatted about the Internet and computers. LOL The usual topic of discussion when one is around me. LOL LOL We talked about how Kaiser and how long it takes to get approvals.. Deloris told us she was working on one recently til 7 PM the night before the surgery!!

Eventually the anesthesiologist came into talk to me. There was a discussion of anti-nausea meds and IVs. It wasn't too long before Denise, the nurse anesthesist, came to start my IV. The first words out of my mom and my mouth were "right side." LOL LOL We are sooo good at this. LOL LOL It took Denise two tries to get my IV started. The first time the needle went in but the catheter would not thread thru. :-( She got the catheter in on the second stick. Denise told me that I could leave my partial in. I was soo glad to hear that.

At one point, Deloris talked to PS.. He said that he was a few minutes out. Someone, I believe it was Deloris said his few minutes would be thirty minutes. She was right. LOL He came in about 8:20 AM.

The first words out of my mouth to him were.. I've got a bone to pick with you.. And he goes sorry about the other night.. (I had tried to instant message him one night about my approval and he was busy. LOL) Then I go on to say something like... What were you doing online at 1 AM?? LOL Deloris told me that he got the funniest look on his face when I said that. LOL LOL

Well then it was time to head off to the OR. I hugged my mom. Then the nurse anesthesist, Jeanette (one of the OR nurses), and I were off. I believe it was the same OR I was in last April. I transferred over to the table. Denise got me ready to go under. She was pretty fast. The next thing I know, she is waking me up in the OR after the surgery. LOL I roused for like ten seconds and I was out again.

I woke up in recovery. I didn't have a bad experience there at all. I do remember being cold and telling the nurse I was cold so she brought me a blanket from the warmer. At one time I asked the nurse what time it was and she told me it was 11:30 AM. I probably laid awake in recovery for thirty minutes before they transferred me to my room.

At about noon, I got transferred to my room. I was headed for Peds again. We got up to Peds and I got settled into my room. I had a private room.. The only way to go. :-)

I slept off and on all day. I ate ice chips off and on during the afternoon. By night, I was drinking 7-Up. I even had some jello in the evening. I would doze off and someone would wake me up. Jo, the nurse who took care of me on Tuesday. was really nice. I found out that she is a member of AOL too. LOL Do all doctors and nurses at St. Luke's use AOL?? LOL LOL I love to give people sh** about AOL. LOL LOL

PS and his friend came by about 4:50 PM. He told me that as soon as Deloris comes by in the AM, I could go home. I thought that was cool. He knows I like to get out of there as fast as I can. LOL

My parents left at about 6:40 PM. They wanted to get home before it got icy.

I slept off and on some more. I think that the longest I was ever awake was between 11:50 PM and 1:00 AM.

The moisture from the oxygen tubing kept annoying me. Nothing new there. LOL

Wednesday, January 13, 1999

I woke up at 5:50 AM and stayed awake. I watched or rather listened to three hours worth of news programs. I drank some 7-Up and water. I drank it way too fast tho. LOL I didn't get sick or anything but it made my stomach hurt. :-(

Deloris finally came in about 8:50 AM. She took the dressing off my head. (I think PS paid me back for my remark about his being online by doing a he** of a bandage wrap. LOL) I was really pleased where he placed the incision for harvesting the cartilage. It is behind my ear. I wish my other PS had thought about that back in March 1981 when they took the cartilage from my right ear and put it in the tip of my nose. I go for suture removal and checkup on Tues., Jan. 19, 1999 at 10:15 AM.

I ate some real breakfast. LOL That really helped. I called my mom about 9:15 AM. She said my dad was on his way.

Around 9:30 AM, my dad came in as I was getting dressed. We had to wait for a few minutes for the nurse to pull my IV. She pulled it and gave me my discharge orders. Once she did that, my dad and I were on our way. I stopped by to say "Hello" to one of the nurses. I've known her since Sept. 1997. She always gets my homepage address from me so she can check out my page. My dad was like "Why is that address so long?" LOL

After that, my dad and I left. I got home around 10:00 AM. I grabbed my snail mail and came downstairs and logged on. LOL

The Preparation

This is the surgery I thought that I would never have. LOL LOL

December 1998

Tues., Dec. 8, 1998

Today I went to see my PS. I finally got a surgery date at long last. PS is pleased at how my nostrils opened up. My surgery is scheduled for Tues., Jan. 12, 1999. I wanted it as soon as possible but yet had to allow enough time for PS to advocate with HMO to do the surgery at St. Luke's. If I get to have my surgery at St. Luke's, it will be like coming full circle. PS told me that this is the last planned reconstruction he has for me!!!!!!!!!! I AM STOKED BEYOND BELIEF!!!!!!!!!! I was born at St. Luke's and had my first reconstructive surgery, cleft lip repair, there in June 1964 at the young age of nine days old. To have my last planned reconstructive surgery at St. Luke's would mean a lot to me.

The surgery will involve taking cartilage from my left ear and grafting it inside the columella. It will allow for more stability for the columella. Right now my columella is very contracted, which means it is very thin. From what I understand this will be a short trip to the OR.. about two hours.

I have lots to keep me busy until my surgery. I am working on a website for a non-profit organization.

Wed., Dec. 9, 1998

I started uploading a few of the pages that I have been working on.

I am not in a state of panic over my surgery. People can't understand my excitement though. I've waited a VERY long time for this part of my reconstruction.

Thurs., Dec. 10, 1998

I slept late because I didn't go to bed until very late. LOL I am working on the website still. It is a slow process because I am doing the HTML and graphics. I missed Ashley's program at school because I was working on graphics. Ally got to go to Ashley's school program and really enjoyed it. I have decided to build my own graphics for my own homepages.

I posted to a listserv about my excitement over my surgery. I do hope that people understand it.

Fri., Dec. 11, 1998

I am still working on that website.

Sat., Dec. 12, 1998

I uploaded the first of my pages with my own graphics. I am pleased with my creativity. Now I can actually make graphics that are my own. I use PSP 5.0. What a cool program!! And what's even better, I found some tutorials that have really helped me.

I was home all day by myself while my parents went out. They went shopping and out to dinner with my oldest brother and sister-in-law.

Sun., Dec. 13, 1998

I worked on different graphics and pages today.

Mon., Dec. 14, 1998

I went bowling tonight and bowled a little above my average. Last week I bowled a 130.. Nearly 40 points above my average. I continued working on my graphics.

Tues., Dec. 15, 1998

I worked on the non profit's website. The staff there emailed me.. One of the board members of my former employer died over the weekend. I had known the man since 1989 but had not seen him since I got laid off.

Wed., Dec. 16, 1998

I worked some more on WILS' website.

Tonight Ally was practicing her song for her program at school tomorrow night. Well she substituted a word for King that wasn't very nice. I thought I was gonna laugh myself silly along with my mom and sister-in-law. LOL LOL Mom told Ally that she would have to sing the song correctly for her program tomorrow night.

Thurs., Dec. 17, 1998

I got up at 1:45 PM. Then I worked on pages until late afternoon.

Ashley came over for Ally's school program. My parents, Ashley, and I went to Ally's program. Ally did really well. She really got into the music and she sang the songs correctly. :-) We could hear her voice where we were sitting.

Fri., Dec. 18, 1998

I almost have the website done. I still need to do the text pages though. But I have the main part of the site done.

I stayed up until 10:00 AM and slept 'til 4:00 PM. LOL Gee, Kristi, what great sleeping habits you have. LOL

My dad's oldest sister and her husband came over for the afternoon and evening. We had dinner and exchanged gifts.

Sat., Dec. 19, 1998

I worked on graphics. Kayla, my youngest niece, spent the night with us. I went to bed at 10 PM and got up at 11:10 AM. I must have been really tired from staying up all night on Thursday.

Sun., Dec. 20, 1998

We had freezing rain and it made the roads quite hazardous. It was an indoor kind of day. :-)

Mon., Dec. 21, 1998

Caron's maternal grandfather died during the night. :-( Scott and Caron will be heading for Iowa tomorrow for the funeral. Ally will be staying with us while they are gone.

I went bowling tonight. I had a good series for me.. 303. The other gal who bowls on my team is having gall bladder surgery on Wed., Jan. 6, 1999.. Just six days before me. We had treats and snacks to eat. it was great. Because of the weather, not many bowlers showed up. We were done bowling by 8:45 PM.

Tues., Dec. 22, 1998

Scott had a job interview at 9:30 AM and then he and Caron headed for Iowa. Ally stayed with us and behaved very well. Sally, their small dog, stayed with us too.

I didn't get up until 2:10 PM. My dad came and got me up because he needed me to go run an errand with him. Ashley is getting a computer for Christmas and my parents wanted to get her a program that she could create things. I picked out Microsoft Greetings 99 for her.

I resigned as a CL.. I wanted to concentrate on my surgery and recovery. I want it to be as relaxing as possible. After being stressed out the last time, there was no way I was going through that again. Anyway I was burnt out being a CL.

I stayed up nearly all night working on graphics.

Wed., Dec. 23, 1998

I spent more time working on graphics. LOL

Thurs., Dec. 24, 1998 - Christmas Eve

I woke up early.. like at 9:10 AM. I didn't need to be sleeping the whole day away. LOL I worked on graphics much of the day. It was quiet around here. Ashley called us that evening and told us that she got her computer. I am so excited for her. Her parents should have bought her one a long time ago.

I finally got caught up on scanning the kids pics. I hope to have their pages redone by the time I have my surgery.

Fri., Dec. 25, 1998 - Christmas Day

I woke up at 9 AM. I went and checked my email like I do nearly every morning. LOL I went upstairs and took a bath. I came downstairs and got dressed.. I wore my snowflake sweater with pink turtleneck and a pair of Levi's jeans. I checked mail and sent a Christmas greeting to the people on one of the many mailing lists I am on.

I went upstairs and waited for the family to arrive. Family members started arriving about 11 AM. By 11:30 AM, everyone was here. The kids opened up their stockings. Then the gift exchange started. In our family room, we had seventeen people opening gifts. That's a lot of people in one 27' x 17' room. LOL It took us about thirty minutes to open the gifts. Everyone seemed to enjoy their gifts.

We eventually had dinner, which was really good. There were eleven of us who sat down to dinner here at the house. Some family members had left to go eat elsewhere with their other relatives.

I checked my email after dinner. No one was around and there was very little email.

Some family left about 4:30 or so. Then Scott, Caron, and Ally left to go over to a friend of Caron's for a bit. They came back a little before 7 PM. Not long after they got back, we all had leftovers.

After Scott and his family left, I came down and worked on graphics for awhile. I was in bed at midnight.

Sat., Dec. 26, 1998

I woke up at 10:30 AM. My parents left in a little while to go shopping for some after Christmas bargains. I worked on graphics as usual. I spent most of the day and night doing that. I didn't got to bed until after 8 AM Sunday. LOL Oh man I am doomed. LOL

Sun., Dec. 27, 1998

After going to bed after 8 AM, I didn't get up until after 3 PM. LOL My dad tried to tell everyone I didn't get up 'til 4. LOL I am on some wacky sleeping schedule. It's not good since I have a surgery coming up in sixteen days. :-( Maybe someday I will get back in sync. What I need is plenty of rest to stay healthy. The kids need to stay healthy too for my sake.

I worked on graphics some and then bathed and got dressed. I ate leftovers for dinner.

We had some neighbors over around 8 PM. They stayed until about 10:45 PM. I came downstairs to work on pages.

It's really amazing that I haven't really stressed out over my upcoming surgery. In fact, I haven't thought about it too much. I guess that I have been soo busy working on pages and doing stuff for the holidays that I haven't had much time to think about it. It could be that I have been preparing for this for sooo long that I don't need to stress over the surgery. I feel very ready.

I still haven't heard from my HMO about my approval. That has me slightly worried. If I don't hear anything by Sat., Jan 2nd, I will call Brenda on Mon., Jan. 4th.

I have been working on the experiences section of my home page. It really hit me at times where I had been and the fact that I am having surgery in sixteen days. I am not panicking or anything over the surgery. I am not even having any weird dreams. Could it be that I have found my peace at last??

I am NOT pissed at anyone. LOL I think that a lot of it has to do with a lot of changes I have made in my life over the last several months.. I am no longer part of an organization that I was part of for two years. I left it due to personal reasons that I don't want to get into here. I spend a lot less time online these days. What time I do spend online, I am working on graphics and pages. I am part of a newer group called Cleftnotes. It was started by two friends of mine, Nancy and Laura. They are moms of children with clefts. They are doing a wonderful job!! A very supportive site. I have stopped doing a lot of volunteer work online. It was time to start focusing on me for a change.

My biggest worry is my money situation. The funds are getting low after being unemployed for two years. Two of my biggest wishes in 1999 (besides having a successful reconstructive surgery) are: getting a job and paying off my debts. Those are two major goals for me in 1999.

Mon., Dec. 28, 1998

I went to bed at 6:30 AM and got up at 2:30 PM. Such wonderful sleeping hours. LOL LOL I went bowling but had three really bad games. :-(

I thought that I was nervous about my surgery.. Guess what I am having PSS (Pre-Surgery Syndrome) again!!!!!!! I hate it. LOL I only have fifteen more days and then it will be over. THANK GOODNESS!!!!!!!

I spent some time working on my pages. Making graphics is sooo time consuming. But I really enjoy doing them. I need to get my act together and pay for Blade Pro, an excellent plugin for Paint Shop Pro.

Tues., Dec. 28, 1998

My surgery is only two weeks away. YIKES LOL I am starting to stress. LOL

It was another night of staying up all night. LOL Not too smart with two weeks t go before my surgery.

Ashley stayed with us. She is growing up way too fast!!!!!

Wed., Dec. 30, 1998

I went to bed at 8 AM and got up at 1:00 PM.

GOOD NEWS!!! :-) Scott and Caron are going to have another girl!!! Caron's due date is May 7, 1999. There was a clear shot of the baby's face. The baby's face appears to be formed perfectly. I will have four nieces by the time my next birthday rolls around. :-)

Thurs., Dec. 31, 1998

I fell asleep at 12 AM and woke up around 4 AM. I did take a nap later in the day tho. I worked some more on my pages.

Today's kind of a somber anniversary for me.. I lost my job of 5 1/2 years on this date in 1996. The day past quietly. My parents and I stayed home and spent a quiet evening here at home.

I fell sleep at about 10:30 PM and slept til about 2:40 AM. I am on such a weird sleeping schedule these days.

January 1999

Fri., Jan. 1, 1999

HAPPY NEW YEAR!!!!!!!! :-)

I did go back to bed about 8 AM and slept til about 11:20 AM. I worked a little on my pages.

The meteorologists predicted a major snowstorm for us. Guess what?? We got three inches officially in KC. Here at my house, there is less than two inches of snow on the ground. They really vlew that one. LOL

Kayla came over and spent the night with us.

Sat., Jan. 2, 1999

I am ten days away form my surgery. WOW

I fell asleep at 10:00 PM and woke up at 3:00 AM. I listened to my stereo and worked on pages.

Rebuilding my pages is slow going. There is a lot to do. I may not get it all done before my surgery. But I can at least try. :-)

I still haven't heard anything about the approval from my HMO. I guess I will be calling Brenda on Monday. This is stressing me out some. :-(

I fell asleep at 3:00 PM and did not hear anything until my mom came down and woke me up at 6:00 PM. I was definitely out. LOL LOL

Ally spent the night with us. We've had all three girls spend the night with us one time or another this week.

Sun., Jan. 3, 1999

Nine more days. I worked more on pages. I built a homepage for Callie, my cat. We didn't get the snow that was predicted.

Mon., Jan. 4, 1999

Eight days to go..

Today was another strange sleeping day. LOL I went to bed late and got up late (fell asleep at 11:30 AM and got up at 4:15 PM. I didn't go bowling. I still haven't gotten my approval.

Tues., Jan. 5, 1999

One week to go and no word yet. I called the clinic and oni told me that they were still working on it. The letter had been written and the HMO needed some codes so Deloris was fazing them today or tomorrow.

I started building a family homepage. My main homepage is getting too big. LOL

Wed., Jan. 6, 1999

Six days to go and I am starting to get nervous about not hearing anything. I worked some more on pages.

Thurs., Jan. 7, 1999

Five days to go and nothing.. This is getting too close for my liking. :-(

Fri., Jan. 8, 1999

Four days to go and still no word.

Sat., Jan. 9, 1999

Three days to go and still no word!!!!!!! I am really starting to stress over it all. :-(

Sun., Jan. 10, 1999

Today was obviously a bad day :-( I went to bed at 3:30 AM and woke up at 7:00 AM. I got up and worked on a friend's homepage, which I started last night. Then my next to the oldest brother called and we got into an argument over NOTHING. I went to bed at NOON and slept til 6:15 PM. I was tired!!

I posted to CN late Sunday night.. I talked about rescheduling the surgery because I hadn't heard anything. After I posted, I went upstairs to take a bath. My mom and I talked. The plan is for me to call the clinic and find out what is holding everything up.

Mon., Jan. 11, 1999

One day left and no word!!!!! I am really starting to stress. :-(

I got a call from Brenda between 12:45 PM and 1 PM. TOMORROW IS A GO!!!! I couldn't believe my ears.. I have to be there at 6 AM since I am scheduled at 7:45 AM. I like being first.. Don't have to wait around. LOL I did tell her that I spent one stressful weekend.

I drank two big glasses of water between 1 PM and 3 PM.

I slept from about 3:30 PM til 6:30 PM. I got up and ate my good-luck pizza. I drank three large glasses of water before 11:00 PM.

I spent the evening online as usual. LOL I took a bath and washed my hair about 12:30 AM. I came back and said good night to a couple of friends. I noticed that my PS was online so I will give him sh** tomorrow about that. LOL LOL

I changed the sheets on my bed. I sat and listened to some music for a bit. I finally laid down about 3:30 AM. And I slept less than 30 mins. LOL Oh well I will spend the rest of the day sleeping. LOL