Sometimes the worst brings out the best in people. It's all in how you look at things. Is your glass half empty or half full?

When I went for my bi annual dental cleaning two years ago, I never knew that experience would change my life.

X-rays taken during the dental cleaning showed I had an abscess by my front capped tooth. I had no idea-no symptoms. My dentist recommended that I see a colleague right down the street that specializes in oral surgery. I made the appointment and went to see him for a consult. He took more X-rays and confirmed I had an abscess and recommended surgery. But, he was clearly nervous. He kept tapping his foot while telling me how many problems I had going on-infection, bone loss, need for root canal, antibiotics and potential loss of my two front teeth. I asked him if he ever treated a patient with a cleft palate and he said "no". I paid the $275 dollar consultation fee and left. This oral surgeon clearly was overwhelmed and there was no way I was going to have him do surgery. The foot tapping really did it for me.

I then called my dentist and he gave me the name of another dentist who performs root canal surgery. I saw the dentist and underwent root canal surgery, however, the dentist could not get to the deep root to entirely clean up the infection.. This dentist also had never treated a patient with a cleft palate.  I was put on antibiotics and told to find an oral surgeon. Even though I had dental insurance, it really didn't cover any of the procedure. I believe that root canal was about $750 out of pocket.

I left that dentist not knowing what to do next. I was on antibiotics due to the infection and knowing I had to find an oral surgeon who could help me-and quickly. You don't want to fool around with an infection in your mouth. But, I had no where to go. My dentist recommended the oral surgeon-foot tapper-who had no clue how to treat me and I just went to the dentist he recommended for the root canal -which was unsuccessful.

I briefly tried searching the internet for anyone that treats adult cleft palate patients with dental needs. I kept searching but could not find anyone.

I called one of my best friends and asked if she knew of a good oral surgeon. She did some investigation and called me back with the name of a well known oral surgeon. I made the appointment and went to see him for a consult. His practice was fairly large with multiple oral surgeons and assistants sharing the practice.

This oral surgeon did more X-rays and a more thorough dental exam. He recommended further surgery which would involve using cadaver bone to build up my palate and possible removal of my 2 front teeth to get to the root of the infection. I asked him if he ever took care of a cleft palate patient and he said "no". But, he reassured me that he could do the procedure. I had a decision to make. Do I go with this dentist? He seemed to know what he was doing and he came with good references. I really didn't have a lot of time to keep searching for an oral surgeon since I still had the infection in my mouth and was on antibiotics.

After talking with Colleen, who was with me for every appointment and procedure, I decided to go with this surgeon. I made the appointment and they required that I pay for the surgery upfront. I believe it was $4, 750. He said if I wanted anesthesia during the procedure that it would be an additional $1,800. What? That's crazy. He said I would pay the anesthesia company directly. I told him I would think about it. My choice was to be given a pill of Valium while in the office prior to the procedure and then be given injections of novacaine throughout my mouth. The procedure was to last a few hours. After laying awake at night, I decided to spend the $1,800 dollars and go with IV sedation.

The day came and I went to Palatine to have my oral surgery. It was mostly a blur after I took the Valium pre-op. At the end of the surgery, I was told they had to remove my 2 front teeth. I was put on additional antibiotics and sent home.

The next day I called the office and talked to the surgeon and said I had a horrible stench coming from my mouth. He told me to wait a day or two and see if it was getting worse. The next day I called him again and asked to be seen. The stench was horrible. He ended putting me on an additional antibiotic and sent me on my way.

The additional antibiotic seemed to do the trick. I went back in @2 weeks and had the sutures removed. The surgeon removed the sutures and also fitted me with a "flipper" to wear. The "flipper" is like a retainer with 2 fake front teeth.  You have to remove it to eat. So, he removed the sutures, gave me the "flipper" to wear and I was to continue with the antibiotics.

I got home from the appointment and was in the kitchen drinking a glass of water. I took a drink of water and the water shot out of my nose and a sucking blow hole noise came out of me. Oh my God. What the hell was that??? I immediately called the oral surgeon. He told me to come in the next morning to see me. I knew the water coming out of my nose and the sucking noise was not a good thing!

The next day I saw him and he explained the surgery probably created a small hole in my sinus. He said it was, "worrisome".  He told me that he thought it would close on its own over time. He told me to keep taking the antibiotics and to wear the "flipper".

There comes a time in your life when you know something is not right. You listen to your body and your common sense. This was one of those times. And, I listened and heard the message.

I immediately called my primary care physician and explained the situation. She gave me the name of a ENT doctor. I saw the ENT doctor. He did his exam and I looked over at him. He was looking up at the ceiling with a dreadful look on his face. I said, "what's wrong?". He said that he could not treat me because it was out of his scope. He gave me the name of a plastic surgeon and quickly sent me on my way. I got into my car and cried. The look on this doctors face was one of horror. I was so mad at him. Why didn't he put on his doctor mask face? A patient should not look at the doctor and see horror in his face. Shame on him. How would he like it if he went to a doctor and looked over at his face only to see despair.

So, I then made an appointment with this plastic surgeon that he recommended. He examined me and said he could do surgery to help with the sinus and help with improving my breathing. I asked him if he ever treated a patient with a cleft lip/palate. And, he said, "no." He was all set to schedule me for surgery. I told him that I would call him if I decided to go with him.

Frustrated, disappointed and scared. No one seemed to know how to treat an adult cleft palate patient. What was I to do?

I went back to the Internet and searched and searched for answers and help.

In the mean time, I had to go back to the oral surgeon because I developed a yeast infection in my mouth. I was put on yet another antibiotic. The inside of my mouth was all raw and red.

I made an appointment to see my infectious disease doctor-Dr. Leonard Kaplan of Northshore Health Care. I had previously been treated by him due to getting 4 bouts of C. Diff from being on antibiotics. When I saw him I went over all the antibiotics I had been on and what doctors I had seen. He asked me if any doctor ever ordered a CT scan of my face. I said "no". He ordered the CT scan. He called my oral surgeon and adjusted the antibiotics I was on. This doctor definitely knew his stuff. Thank God I had Dr. Kaplan in my corner.

I then went back to the internet and continued to search for cleft palate doctors. I did find some but most of them treated children and not adults. I finally found the University of Illinois Craniofacial Clinic. I found the Golden Ticket. I won the lottery!!

I had an appointment at the University of a Illinois Craniofacial clinic. I brought a copy of my CT results as well as a list of doctors I had seen and medications I was on. The appointment lasted a few hours. I saw Dr. Cohen-the plastic surgeon, and had my hearing and speech tested. I had more X-rays and bone density of my mouth performed. Dr. Cohen answered all of my questions. He put my mind at ease. I finally found a doctor and team of doctors and nurses that knew what they were doing.

That was 2 years ago. And, I'm still going to UIC for care. I'm in the process of getting my two front teeth dental implants. It's been a long journey.

Dr Cohen performed his first surgery two years ago -took bone from my hip to build my palate. The second surgery was in October 2015 where they did a lip revision, and made it so that I could breathe out of my nose. I've always been a mouth breather because I could never breathe in and out of my nose due to a deviated septum. Dr Reisberg also inserted the rods for the dental implants.

The team at the UI Craniofacial center are angels. They treat all patients with respect and provide the best care possible.

Having an abscess and trying to find the appropriate doctor to treat me really changed my life.

In the next few blogs you will see how this experience changed me-for the better.

It's hard to do so something you've never done before but don't give up

I am trying my hand at writing a Children's book and it's been rather hard. My first draft was way too long and had too many positive messages, stories within stories and a lot of characters. Way too much for a children's book.

I know the story I want to tell. But, I'm having a hard time.

Here is the story- a cardinal was born with part of his beak missing. Simon is the name of the cardinal. He goes to a team of doctors that work together to get him the proper care that he needs. Throughout his life he meets other birds that help shape his life. The other cardinals see Simon as he is and love him for all his imperfections. They look past his scar and find his inner beauty. And, Simon finds their inner beauty. Susie, Pixie, Fallon, Pete and Mark, and Mrs. Klein all teach Simon important life lessons. There is a Bully, and he flies around being negative and picks on the weak birds.

The message of the book is to let every child know that no matter what hardships
you have in your life-you stand tall -be proud of who you are !! Overcoming trials is what shapes our identities and makes us stronger.

I found a wonderful woman through Etsy that made each of Simon's flock according to my specifications (glasses, jewelry, flip flops, butterflies, teacher with books and two male cardinals who are in love). As well as a angry, miserable bully cardinal. The name of her shop in Etsy is AHappyCarrot.

So I have the message and the characters. Now I just need to write it. My first draft was way too long. I've looked at so many children's books and they all are very succinct and basic. Powerful messages that seem so easy to understand.

I also looked at books that were written specifically to address cleft lip and palate kids. However, none of them really engaged me and left me thinking that I could do better. So, that's what I have set out to do. Who better to write a book about being born with a cleft lip and palate then myself. It's really a book about being born different. But, as you go through life you realize that everyone is different and it's actually a good thing and should be embraced. But, when you are a child, you just want to fit in and not stand out. You don't want people staring at you and making fun of you. You just want to blend in with the other kids.

I picked a Cardinal because they are beautiful, strong birds that represent faith, hope and joy. They have always appeared in my life and my family's life as a reminder that angels are among us. Whenever I see a cardinal it has provided me with comfort knowing that someone from heaven is stopping by to say hello and to leave a message as if to say you are loved and to stay positive and strong.

So, now it's time to try writing another draft of the book.

Everyone needs a little bling in their life!

I went Tuesday for my appointment to begin the process of getting my dental implants.

Dr. Reisberg had told me in advance that this was going to be the hardest part of the process. He put some cherry tasting like novacaine jelly on my gums. Then waited a bit before he gave me the injections. Front gums and roof of mouth. Several injections and they were painful. I wish I had taken something before the procedure to help alleviate my fear. Anytime any dentist or dental hygienist would work on the front part of my upper teeth I always broke out in a sweat and would stiffen up like a mummy. This was no exception. My cleft palate runs from my front left gum to my roof of my mouth. Like a passageway.

This appointment involved cutting into the gums to uncover the dental screws. Dr. Reisberg used a  'puncher' to expose the screws. But, before he did this, I had one or two stitches remaining in my lip from the lip revision I had in October 2015. He used tweezers and scissors to cut the imbedded knot. This whole process took about 10 minutes of pulling and tugging my upper lip. Finally he said he got 1 7/8 's out. Yikes, that hurt but I was glad that blue stitch finally came out because I could not only see it but also feel it.

Back to the procedure. Dr. Reisberg continued to unveil the screws. At the very end he put silver caps on the end of the screws. I'm not sure what happened at the very end but all I know is that I almost jumped off the table in pain. He was pushing on the left implant with a lot of force and the pain shot through my body as I screamed in pain. He apologized and said he was sorry that portion was painful.
I thought to myself, "oh dear God, I hope the bone did not crack." In fact, when I go back on March 4th I'm going t ask that he take an X-ray to make sure everything is okay.

The whole procedure lasted a little over an hour. After the procedure, he gave me a mirror so I could see the two silver screw ends. When I looked at myself and saw the silver all I could do was think back to high school. I had to have braces and in order for that to happen I had to have a "silver" left front tooth. I guess a needed a 'cap' that was strong enough for the braces. My God. Here I was in high school walking around with a silver front tooth. This was before Madonna or 50 cent who made 'grills' popular. I stuck out like a sore thumb. I mean come on. I'm in high school having a shining silver front tooth. I had that silver tooth for at least 3 years. No wonder I never dated in high school! I looked like a freak. So, when I looked at myself in the mirror with the two small screws I just smiled to myself. Almost 55 years of age and still got the bling!

You have to have a sense of humor or you will not survive in this world. You have to walk around with a skin tone bullet proof vest because you are gonna need it. Just when you think things can't get worse-they do. So, you just pick yourself up, dust yourself off and move forward.

I can certainly walk around with these little silver screws for the next two months. Geez, that is nothing. I have 4 more appointments set up every 2 weeks so I should have my new teeth by then. I guess they have to make dental impressions and make the screws longer during the next several appointments.

I will go back and try and find pictures of me wearing my silver bling in high school. I know my yearbook picture has me flashing my bling-I smiled with my mouth closed but you can still see some of the silver shining through.

Here is a picture of me after my procedure. Those little screws are not gonna stop me from smiling!

Smile Even Though You Might Be Missing Some Teeth

I've learned a few things since I had to have my two front teeth removed two years ago.
First, nothing can stop you from smiling!

Second, you don't realize how important your teeth are until they have to be removed.

Third, people look at you -stare-when they see that you are missing your front teeth. It's a great way to tell a tall tale or have a little fun explaining why you are missing your teeth.

Scenario, I'm in the cafeteria at work waiting in line when I run into someone I haven't seen in years. I have a huge smile on my face and say "hi!!". This girl looks at me with shock in her face. I don't even wait for her to ask me about my teeth. I start by saying, "I'm sure you are wondering what happened to my teeth? Well, I was at a Chicago Blackhawks game and the puck flew over the boards and hit me in the mouth. It was in the news. Didn't you see it?". Her expression on her face was priceless. She was in shock and said, "oh my God, how horrible!". She went on to say that she was meeting up with the old gang from our previous job that night. I told her to tell them I say hello. This girl was a huge busy body and loved to gossip. So, I walked away and just had the best laugh. I would love to have been at that dinner to hear her tell the story.

Another time I was at work and was walking down the hall when the Director was walking towards me. I flashed a huge smile. Huge smile. The look on his face was one of shear horror. He looked at me and his face said it all. "Oh my God, what happened to you? Wait, doesn't the company offer dental insurance??"  Again, as I passed him, I just giggled.

You have to have a sense of humor. When things happen to you unexpectedly you have a choice to make. Either make the best out of it or walk around with a frown on your face. I chose to keep smiling and laughing over these past two years.

Tomorrow I start the process of getting my two front dental implants. They had to take bone from my hip to build my palate and I've had to wait to make sure I have enough bone for the implants. Two years waiting for the bone to grow. That's a long time to walk around and not have your two front teeth.

When I was in New York over the Holidays, I sat on Santa's lap. I smiled at him and said, "Santa, all I want is my two front teeth". He had a sweet smile on his face and said, "Well, I can't promise that. That's a pretty big wish". I said , I know Santa and he winked at me and smiled as he handed me a candy cane.

I am nervous about tomorrow. I guess tomorrow is the worst of the 5 upcoming appointments. They have to cut into my gum and expose the two dental screws. Just thinking about the injections makes my palms sweat. But, I will get through it. And, hopefully by the end of May I will have my two new front teeth. I'm sure I will be smiling from ear to ear.

I have to give a wonderful shout out to the University of Illinois in Chicago. Specifically, Dr. Cohen and Dr. Reisberg. Dr. Reisberg is a wonderful Dentist who knows what he is doing! He is kind and is an artist when it comes to restoring your smile. He has a very caring soul. Dr. Cohen, is also an artist and every patient is his masterpiece! As my Mom would say, God bless the day these two doctors were born. My heart is filled with gratitude for these two wonderful doctors and the entire team at the University of Illinois in Chicago Craniofacial Clinic. You make sure each person can smile!

Don't hold back. Smile and let everyone be touched by your beauty!

We all have a story to tell so make it a good one!

I've started this blog so that you can learn about me and my experiences. I was born with a cleft lip and palate. However, that scar does not define who I am. I am more than a scar. I believe that I've turned out to be a good person who just wants to pass on words of wisdom and share experiences that I've had in my life that changed me for the better.

I've been reading some blogs from Moms that have cleft lip and/or palate children. You are at an advantage because you have the internet and support groups that can help you with your concerns.

When I was born in 1961 there was no social media-no IPhones, no Internet, no texting, no tweeting, no Facebook and no way to gather information other than the encyclopedia or going to the library to look up medical explanations. The Internet is a wonderful resource when used properly. However, you can fall into the social media vortex spending hours upon hours reading into things or trying to connect to people that may have the "answer" to your problems.

The only reason I am on Facebook and created a blog was because this was suggested to me as a way to connect with people. So, I will see how this goes. If I can help one person than it has been worth it.

I guess the most important thing I can say is that you will get through this. Life really is what you make it. You can choose to be a positive or negative person. You can think only about yourself or you can reach out to others. In life, you get what you give. Pretty simple to remember and implement. The rewards are not monetary but rather help shape the person you are becoming. Do the right thing, extend your hand and help the next person. You have a voice so use it. Never be afraid to question a health care professional and listen to your heart. If what they are recommending does not sound right to you, hit the pause button and see if you can reach out to others and get a second, third or sometimes fourth opinion.

Define what you think the word beautiful means. For me, beauty is what is in the inside and doesn't happen overnight. Your story in life will create the inner beauty and people who really love you will see that beauty when they look into your eyes. Smiling helps that inner beauty escape so it can touch others.

There are unfulfilled needs of adult patients who have had a cleft lip and/or palate

Adult patients continue to have a wide range of problems relating to their cleft.

For some patients who have had a cleft lip and/or palate, problems continue into adulthood or arise later in life. These problems are often multiple and treatment often requires the input of more than one specialist. Common problems such as nose and lip deformity and malocclusion, poorly fitting dental prostheses, oronasal fistulae, and speech problems are just to name a few. 

There needs to be a global awareness that there is a need for coordinated multidisciplinary cleft teams to provide continuing care for patients who have a history of cleft lip and/or palate. The team approach plays such an important role in optimizing surgical, dental, speech, and psychosocial outcomes for these patients.

Please help me raise the awareness. Where do adult patients turn to for help?

My Story

My Name is Patricia Simon and I was born with a cleft lip and palate.

My first surgery was at 6 months of age. I had speech therapy when I was a child. I had my second surgery when I was 13-14 years of age. 

I recently had two more surgeries as a result of getting a dental abscess in my two front teeth. Due to a dentist inexperienced with cleft lip and palate, I continued to have problems with my teeth and had to have bone taken from my hip to build my palate. 

For the last two years, I have been without my two front teeth as I wait for the bone to grow in my palate. The next step is to begin the process of getting dental implants for my two front teeth.

I am the youngest of five children and my brothers and sisters have always been very supportive and loving towards me. I have also been blessed with having wonderful friends. 

I am a Registered Nurse and have taken care of babies born with cleft lip and palate. I have also provided support to the families.

My family has supported Smile Train throughout the years. When my mother died she asked that in lieu of flowers that donations be sent to the Smile Train. I have raised thousands of dollars by asking my family, friends and co-workers to support the Smile Train. In December 2015, I went to the Smile Train headquarters in New York to see how I could help Smile Train make more smiles possible for children.

I know what the journey is like. No individual can provide any greater comfort or insight than someone who has had to face the same type of problem. I would like to make sure that every patient who has been through this experience comes through it with a positive and optimistic outlook toward life. There are others out their walking a similar journey and I hope to be an encouragement to others. I hope to offer support, information, and an opportunity to network with others affected by cleft lip and palate and other craniofacial deformities.  I hope others will benefit when I share my experiences and my knowledge; The highs and lows. I hope to help others help navigate through difficult social situations.

I am trying my hand at writing a children's book on cleft lip and palate. The story will be about Simon, a bird born with a separation in his beak. It will be a story of love, acceptance and kindness. It will speak to the importance that a smile has on others. Smiling is so important for the soul!

I am dedicated to help those affected by cleft lip and palate.  We now have a website: http://www.smilewithsimon.com/

I hope this will serve as a venue for camaraderie and a formula for hope and support. 

What counts in life is not the mere fact that we have lived. It is what difference we have made in the lives of others that will determine the significance of the life we lead.                                                                ____Nelson Mandela