StephanieSmile

Money for Children's Medical Expenses

2008-06-17T14:45:00.007-06:00

My blog is focused primarily on cleft palates, cleft lips, and dental care. However, this resource I discovered today, could be beneficial to any child in need of medical care. With the increasing cost of just about everything these days, we can all use a little monetary help. Especially when it comes to paying high costs for proper medical care for our children.

Whether you need help to purchase hearing aids for your child, a new wheelchair or braces, to physical therapy, speech therapy, or extensive surgery to correct an abnormality, financial help is just an application away.

UnitedHealthcare Children's Foundation has medical grants available up to $5,000.00 per child!

Of course there are criteria your family must meet in order to qualify, but it looks relatively simple. If you think you can apply and get the cash in your own pocket, stop here. It doesn't work that way. If approved for a grant, the money will be paid directly to the Health Care Professional upon your submittal of the bills. Basically, they will cover what your insurance won't.

Medicaid, Medicare, and other state or federal subsidized health insurance recipients do NOT qualify for these grants. Also, if your child just recently had surgery, orthodontia work, or other medical services, those services do NOT qualify, just future services. They don't cover past medical expenses. However, if your child has more medical care that will be needed, keep reading.

So who does qualify?

1. The child must be 16 years old or younger AND live in the United States.

2. You or your spouse have commercial health insurance coverage. (For instance, you have health coverage through your employer with BCBS, Aetna, etc. Health Insurance that you pay for directly because your self-employed, a sole propietor. Health Insurance provided to city, state, federal, and government employees. All of these qualify.)

3. Your family's total AGI on your most recent tax return, is less than $20,000 PER family member. (For instance, if your a family of 4, your AGI can not exceed $80,001.)

4. Your child resides with you at least 51% of the year AND they were listed on your most recent tax return as your dependent. (This would probably only be an issue for a divorced couple who shares custody. If this is the case, you would need to submit your current tax return and the last return that you were able to claim the child as a dependent.)

5. If the above are met, they will also take into consideration the severity of the child's illness, the potential to improve the child's quality of life, and the financial burden the expenses would cause the family......right down to the copays.

So if you or someone you know might benefit from a grant, go apply today! What do you have to lose? You may just get the little boost you have been waiting for to proceed with a medical necessity for your child.

For more information or to apply, click here:

http://www.uhccf.org/apply.html

Cleft Palate, Cleft Lip, and Pregnancy

2008-06-10T18:24:00.006-06:00

Do you have a cleft palate or cleft lip? A family member with one or both? Know someone who has a child that was born with a Cleft? Are you expecting or trying to conceive? If you answered yes to any of these questions, you may be interested in the following........

RTI International, University of Iowa, and the University of Sau Paulo have teamed up with the National Institute of Dental and Craniofacial Research and the National Institute of Child Health and Human Development for an Oral Cleft Prevention Program.

According to ClinicalTrials.gov, the collaborating teams listed above are actively recruiting participants for a Folic Acid Study. As listed on their website, "The purpose of this study is to asses if taking 4 mg of folic acid per day at preconception and during the first three months of pregnancy decreases the risk of having a child with cleft lip and palate compared to 0.4 mg folic acid for women who have an oral cleft or have had previously child with an oral cleft."

Folic Acid deficiency has been proven to cause facial clefts in lab animals. I've found several articles that reference a study conducted in Norway from 1996 to 2001. According to statistics, Norway has the highest occurrence of Facial Clefts in Europe, which also apparently does not allow their foods to be fortified with folic acid.

Also, taking folic acid during preconception and the first trimester, has been proven to reduce the recurrence of neural tube defects. Neural tube defects affect the brain and spinal cord, such as Spina Bifida.

The current Prevention Program began in 2006 and has a scheduled completion date of September 2011. If you or someone you know is interested in more information regarding this study, you can locate it here: http://clinicaltrials.gov/ct2/show/record/NCT00397917?term=cleft+palate&recr=Open&rank=2

Not interested in joining the program, but still want to reduce your risks? You can buy a Folic Acid, B Vitamin supplement over the counter. Or increase your intake of leafy vegetables, citrus fruit, beans, and whole grains.

In other words, start your day with a Grapefruit for breakfast, then at lunch have yourself a big, fat Spinach salad with Mandarin Oranges, Clementines, Kumquats, and Tangerines. Try it.....I bet it tastes better than it sounds......especially if topped with Raspberry Vinaigrette Dressing.

I think dinner is ready.

Stay Tuned......

2008-06-08T19:20:00.003-06:00

Now that my journey to a new mouth and smile is complete, what do I have to share with others? I enjoy writing and have actually enjoyed "owning" my own blog. While I'm not a professional blogger by any means, it's something I look forward to improving and updating.

So where do I go from here? I think a good start would be committing to at least 2 updates a week.

I'm going to attempt to inform, educate, and teach you something new weekly. Topics will be centered around Dental News, Cranialfacial Abnormalities, Maxillofacial Advances, or Pediatric Dental Care. Anything that relates to Cleft Lips and Cleft Palates to Support of Families affected by Birth Defects.

If you have any topic suggestions that you would like me to touch on or dig into deeper, please feel free to recommend them.

Your my audience and I want to keep you hooked like a badly needed dose of Latte.

For now...........Smile, because Monday is almost here.

All Smiles.......

2008-06-05T11:50:00.003-06:00

I apologize for neglecting my blog, especially to those who have been faithful followers.

Well it's been one year since my since my first visit with Dr. Moore. It's been 4 months since getting my full denture set. We had expected to only have to use my temporary for 3 months while my jaw healed, but the more time we gave it to heal, the better the denture would fit and the fewer needs for adjustments. So I went 6 months with no teeth.

I have added new photos of my Smile, so please go take look!

www.flickr.com/photos/stephaniesmile/

I think you will be amazed at the transformation! I know I am!

The dentures fit very well. The only issue I have with them, is when I use denture cream. After about 6 hours of wear, the cream starts to break down and seeps up into my nasal cavity. It looks like I have a runny nose! It doesn't irritate my nasal passage at all, but it feels nasty. Polident makes denture strips, which I prefer to use, but they can get costly. It takes 5 strips to hold my full set for a day. They come 40 in a box, so they only last me about a week, whereas the creams last a month or more.

I have so much more confidence now with my new mouth and smile. Eating is a joy now, too! I ate my first T-Bone steak ever about two weeks ago! Oh my was it good. Not something I can afford to eat regularly, but I did enjoy it thoroughly! The only food I have a little trouble with are apples and fruits like that. Dentures are not really good for biting with the front. You really have to cut them up and eat that way, but I don't mind doing that at all!

I get phantom tooth pain once in a while, but it's nothing like the real tooth pain I endured for years. It's very much tolerable and doesn't last long.

If anyone has any questions, comments, or other, please feel free to comment here or email me. SeeStephanieSmile@gmail.com

Thank you for your support behind the scenes. Oh and yes, I'm still seeking donations....the bills are still coming in weekly. We pay what we can as we can, but any help is greatly appreciated. I think my Smile is worth every penny and then some! :-)

New Photos & Personalized Decor

2007-07-22T21:07:00.000-06:00

As promised, I have posted new photos in my set. I've also created a new set of photos at the same link, which shows the items I hand paint. I understand some might be reluctant to just donate in order to support my cause, so now you can get something to show for your donation.

I've added a permanent link to all of my photos on the right hand side. The link is just above the Donation Button. Or you can click here: www.flickr.com/photos/stephaniesmile/

You can choose from Personalized Photo Frames, Shadow Boxes, Wall/Door Plaques, Wall Shelves, and a Plaque with Mirror Set. Just click the item your interested in and you will see a close up of the item, how it can be personalized, as well as the purchase price and shipping cost.

You can order by sending an email to SeeStephanieSmile@gmail.com Please allow 48 hours before your order will be shipped. Since all items are customized by you, I do not start painting until you have placed your order.

All sales will help pay for medical expenses associated with helping me to Smile. So not only do you have a great gift and something to show for your money, but you will also be helping me in the process. Any of the items I create are great for new mothers, grandparents, birthday's, Christmas, or even as a treat for yourself!

If you have any questions at all, please don't hesitate to ask!

Hey Lucy, I'm Home!

2007-07-20T18:19:00.000-06:00

Wow, what a day! It was draining, both physically and emotionally. Twenty plus years of living with pain, discomfort, embarrassment, shame, and a YUCK mouth. Those days are now a thing of the past!

Today was my final day of getting my teeth pulled. Just had the last 4 top teeth to go, but I was most nervous about those than the others. (It showed as my blood pressure was high before they started.) Arrived in K.C. with Dr. McDaniels ready to get started. I love this guy and feel very fortunate that he found himself at Truman Med just in time to make me his first complicated patient. I couldn't have asked for a better doctor to pull my teeth. He may not realize it yet, but he played a HUGE role in getting me to where I am right now.

Dr. Mac, if your reading, please accept my apologies for the tears, the jumps, the "owwww's", attitude, and whatever else you were undeserving of from me. I owe you big. Please know that I'm extremely grateful and thankful to have you working on me. It may not have seemed like it at the time, but you truly eased my soul through this process. I can't Thank You enough for your diligence, compassion, and your talent.

Remember the question you asked before we started today? I didn't know how to respond. Having lived with a cleft and those nasty teeth all my life, I don't know any differently. For me, my condition is "normal". How do you advise when you feel that way? Well I thought about it on the way home. The one thing I would say now, is to future cleft patients and their parents, CONVINCE them not to let their situation get to the extreme that mine became. EARLY treatment is the best prevention!!!

Ok, now for the rest of you. I got several shots in the upper gums and roof of my mouth. I think the roof was the absolute worst! As was the case in my last two appointments, we had trouble numbing me again. Dr. Mac gave it his best, but it just wasn't happening. I honestly think, although I'm no expert, that the shots in the roof were not as effective because it's not "MY" roof. It was built for me when I was born without one. So how is it possible to numb something that wasn't originally there? I hope that makes sense.

He really tried to get me as comfortable as possible. In the end, he just had to pull quickly. I felt the roots come out and a sharp pinch, which might have been nerves. Today was by far the most painful of the three appointments.

However, that's all over now!!! YAY!!! Happy Dance!!! As soon as Dr. Mac got the teeth out, Dr. Moore came into the room. He put some fixodent powder on my temporary plate and stuck it in place. That was it!

Now we just have to wait for all of my gums to heal. Once they are completely healed, I will get my full set of bottom and top dentures! YAY!!! We are going to push for 3 months from today. The longer I can hang in there to let them heal, the better my dentures will fit, which means less adjustments.

Tonight, I sleep in my temporary plate. I have to keep it in for 24 hours.....will help to make the gums clot, control the bleeding, and help me get used to them.

New photos have been posted with my others. There are photos of Dr. Mac, Dr. Moore, and me of course! I took new shots of my side profiles before the teeth were pulled, and after the temp was put in. What a big difference!

So for now, I have no teeth on the bottom and 6 false teeth on the top. Doesn't seem like much, but there is a huge improvement to my face and mouth already! So go check out my beautiful "half smile"!

www.flickr.com/photos/stephaniesmile/

Feel free to send a donation in celebration of my progress! :-)The bill is yet to come for the dentures.

I also welcome any questions or comments at SeeStephanieSmile@gmail.com

Big Day

2007-07-20T04:05:00.000-06:00

Today is the big day....the one I've been stressing the most. The top teeth are being pulled at 10 am. I'm nervous! I have great fears that when they pull the tops, it will further damage my hole. Please keep me in your thoughts that everything will go smoothly.

Also, I will be getting my temporary plate. My dad took the money from his savings account to pay for it. It was either that, postpone my appointment, or go without any teeth for 2 months. I had asked if I could just have them pulled today and get the temporary in a few weeks, but that was not an option. The temporary has to be put in immediately after the teeth are pulled. So we didn't have many options.

On a side note, I understand some may be reluctant to just donate money. I have some alternatives for those that wish to help, but want something to show for their donation. I have listed a few items on eBay. The sales will go to help pay the costs we are incurring. I have only 3 items listed right now, but plan to add much more this weekend.

My seller ID on eBay is saffirezz

Also, I make handpainted wall plaques, shelves, and personalized photo frames. I have lots of pictures of my work, but I don't have them up yet. I will create a new Set under my photos on Flickr to display my work. This is a great way for you to help out, plus get something in return. Any style is just $6 each, shelves are $9.

Please look for it this weekend!

I'm on my way out the door to head to Kansas City. Dr. Moore and Dr. McDaniels will both be there today, so I will post photos of them and us when we return this evening.

Thanks for checking in!

Money, Money, Money

2007-07-19T06:54:00.000-06:00

I'm going to touch on something specific......that is becoming a thorn in my side.

At my first appointment with Dr. Moore, I expressed concern over going 2 months without teeth, while my gums heal.

A. Because I wondered how I would be able to eat anything.

B. Because I wondered how bad my speech would become.

C. Because I feared how I would look physically.

He said he could make a "temporary plate" for me to wear on the top. It can be put in immediately after they pull my top teeth tomorrow.

He showed it to me two weeks ago. It's already made. It looks exactly like a small clear plastic gum guard, with 6 false teeth soldered on the front.

Now, when he mentioned it on day one, he said it was called a surgical stint. He gave the finance lady a billing code for it. He said it was $300. She tried to pull the code up, but said it was an invalid code and she didn't know where he got it from. She called it a temporary plate, then told him that was $3000. He disagreed with her, again calling it a stint. She then said "Ohhh, that is $150."

Two weeks ago, she gave me a sheet with my estimated costs. This was only an estimate and the actual expenses could be higher or lower than listed. Last week, I questioned her about the estimate, because it did not reflect the "temporary" at all.

The way she explained it last Friday, was that it was actually a practice mold, to make my permanent obturator. It wasn't listed on the estimate, because it's part of the "Surgical Obturator" listed on my estimate. (That doesn't have a cost listed either. This is the part they have to submit a letter of medical necessity to my insurance company for approval.)

After that discussion, and just before I left after having my bottoms pulled, she came in and explained that "legally" they could not let me have the temporary. If they give it to me now, they can't bill insurance for it later, because it would be considered "Prior Treatment". If that happened, insurance could deny EVERY charge related to my mouth.

That would be financially drowning. Not something I want to chance. So it was discussed as to whether I could just pay for the temporary out right, rather than sending it through insurance at all. Yes, she said. We can do that.

So, along with the weekly costs of gas to drive there and back at about $80, the $25 co-pay due when I check in, and the $130 down payment I pay weekly towards my total bill, she also said to bring an extra $125 for the temporary.

Tuesday she calls and leaves a message for me. I work during their business hours and don't have the ability to call, so mom called her on Wednesday. Now she says the temporary is a "Surgical Stint" and will be an extra $450.

What??? First, why does the name of it keep changing? Second, why does the cost keep changing? I have no paperwork or documentation from them related to this "temporary", "stint", or "practice mold".....whatever they choose to call it week to week.

How do they expect someone to just pay whatever they say on a whim? That's a total of about $685 they expect me to pay in full tomorrow. That's more than I bring home on my paycheck for two weeks!!

My dad, Thank God for him, has applied for a loan against his 401K to help me with all the out of pocket costs. However, it takes time for that to go through, for the check to be issued, and then the bank will hold it for two weeks before the funds will clear.

My mom feels like they have no choice but to pay the $450. My teeth are coming out tomorrow, and she understands all my concerns with having no teeth for 2 months. So she feels like she just has to fork over whatever they say. I say B.S.!

Give me a bill! Give me proof of what it costs, what it's called, etc.

Mom doesn't have that much cash readily available.

So, I just got off the phone with the finance lady. I asked her why the price went from $125 to $450. She says, she misunderstood what it is they are putting in tomorrow. She thought it was a "splint", which is $125. But it's actually a "stint", which is $450.

I have 24 hours to come up with $450. So if you feel inclined to give me a little push, so that I can have temporary top teeth tomorrow, I would forever be grateful!!

If you click the ChipIn button on the right, you can securely make a Paypal or Credit Card donation. The funds are immediately put into my account.

As always, photos will be taken tomorrow morning before and after my appointment. I will post them as soon as I return home. Hopefully, I will return with my fake temporary, so I can give you half a smile.

Thank you all so much for continuing to check back. I am very honored to have faithful readers on my journey to smile.

Photo Journal II

2007-07-18T19:30:00.001-06:00

I apologize for not updating over the past few days. My blog was temporarily "locked", while they made sure I was a real person and not a blogging robot.

Now that I'm back, I have new photos! I don't care for the way the photos post on my blog, as it takes up too much room. So I've decided to put them all in one location. I've added alot of photos you haven't seen yet.

There are photos taken before any work began, photos from the first appointment, the second, and some after shots. I've also posted photos of my side profiles. The dentures are going to be made in such a way, that my upper lip will not appear to sink in anymore. You'll see what I'm referring to when you look at my profiles.

I must also warn you, there are a couple of shots from last Friday, following the rough time I had getting my final bottom teeth out. I feel these are graphic, due to blood and the condition of my gums. So if you have a weak stomach, or if your eating, you may not want to peek.

I've added comments to all the photos in my set, so you know what day the photo relates to and what occurred that day. Hope it makes it easier for you to view the progress.

All of my photos can be viewed at:

http://www.flickr.com/photos/stephaniesmile/

Thanks so much for checking back! More information to come soon!

Ouch Part II

2007-07-13T18:17:00.000-06:00

I've been home from Kansas City for about an hour and a half now. In quite a lot of pain. Today didn't go as smoothly as I had hoped.

First, I want to recognize the doctor that is actually pulling my teeth. His name is Dr. Chris McDaniels. Can't remember if I mentioned this already, but last week was his first week of residency. In all honesty, I was a little unsettled when he told me that, but he truly is a very nice man. His attempts to make me feel comfortable, are genuinely sincere. Not sure how old he is, but I would say no older than 28.

Next week he has agreed to take a photo with me, as I didn't think of it until after he started working on me today. I asked if it would be OK to take one and post it in my photo journal and he was very pleased that I asked. He said it would be honor to pose with me and be a part of my story, as it makes him feel he's actually accomplished himself after 6 hard working years of college.

One thing that I really appreciate about him, is when things aren't going the way they should, or if he's having difficulty, he doesn't just cut corners and force it to happen. He stops and seeks assistance from a senior doctor. Such was the case today.

Today's trip was to have my bottom remaining teeth pulled. There were only 4 left, so I thought it would be much easier than last week. I don't recall exactly how many shots I got this time, but I estimate it was 6 or 7. Again, the middle center tooth was not numbing. I asked why that part of my mouth would not numb again and he said it had to do with my "midline". I'm not really sure what that means. I think he pulled that one first to get it out of the way. Seems like he got the first 3 out in less than 2 minutes. Very simple.

The last tooth left on the bottom, which was in the back of the left side, was not so easy. He could not loosen it at all. I had a root canal done on it several years ago, but half of the top had broken off. He tugged, pulled, twisted, and dug at that tooth for about 20 minutes or so. Nothing. He searched out help from another doctor, who took a look. The 2nd doctor threw on a mask and started helping Dr. McDaniels. I don't know exactly what they were doing, but the pulling was so hard, I thought my jaw would pop out of its socket! Literally! No pain, just alot of pressure and pulling, but they weren't seeing any results.

They decided they would have to drill it, to break it apart. Again, no pain, just pressure and vibration from the drill. The 2nd doctor would drill a little, then Dr. McDaniels would try to pull. They had to drill it about 5 times, then pull, dig, and scrape before they got it to loosen.

Finally it was out!! All my bottom teeth are gone. Now it was time for the stitches. I was doing good at first. They started from the back and worked up to the front. As soon as he got to the center middle, where they have trouble numbing, I felt the needle go in. "Owwwww!" They say, hang in there, your almost done. Pinch! Needle goes in again. Three times I felt the needle pierce my gums. I heard the sound of it poking through. I shut my eyes and all I can think about is a cow getting hung on a meat hook. He pulled on the stitches to knot it, and I can feel him pulling it tight. I even told them that was too tight. One of them, not sure which, just sort of chuckled.

All over, they are done.........until next Friday. That's when I go back to have my top teeth pulled. I only have 4, so I pray it goes much better than the last two trips.

The pain I'm feeling, now that all the Novocaine has worn off, is much worse than it was last week. Probably from the drilling and excessive pulling and digging on that final tooth. My gums on the right side look fabulous compared to the gums that were stitched today. It looks like chopped meat.

I have photos from today.....before and afters. The after photos are pretty graphic in my opinion, so I'm not sure if I should post them here or save them somewhere else with a warning before you look. What do you think? Leave a comment to help me decide if I should include them in my blog. It wouldn't be to done to sicken anyone, but it's a big part of my journey to smile.

Definitely won't be any smiling for now.................

The Bill

2007-07-12T22:30:00.000-06:00

So it's 11:30 pm. Have to get up at 3:45 am to get ready and hit the road to KC. I can't sleep. Just laying there thinking about the shots, the food I can't eat, the pain in my jaw, the money. So thought I would add some more photos. I took some two days ago, but didn't have the courage to put them up. In fact, now I'm changing my mind again. I don't know what is worse, the shots in my jaw and gums or letting people see the real me.

Let me use this post to tell you about the costs. This list is what the finance gal at the hospital gave me last week. It's an "Estimate" and subject to change. Now let me say this first.....she initially told me that Insurance would not cover any of it because they are Out Of Network AND it would be considered a Pre-Existing Condition. However, the written estimate shows a portion that Insurance will cover.

This worries me. Did she get it in writing from my Insurance that it would be covered? Did she even really check with them? Or did she just look up the benefits and assume they will cover it? I don't have definite answers for any of this. So until I have something in writing from the Insurance Company, I'm assuming I'm responsible for all charges.

Here's the break down, word for word on the "Estimate" we signed.

NOTE: The amounts listed below are approximate amounts and subject to your Insurance payments. It has been determined that your Insurance is OUT OF NETWORK.

Extractions:

14 Teeth @ $273.00__________$3822.00
Less Insurance 60%__________$2294.00

Equals___________________$1528.00

Out of Network Deductible_____$750.00

Equals___________________$2278.00

*Requires $130.00 Down Payment each visit*
Will be billed under patient's Medical Insurance

Dentures:

Upper & Lower____________$3100.00
Less Insurance 50%_________$1550.00

Equals__________________$1550.00
Deductible_______________$50.00

Equals__________________$1600.00

**Dental Insurance has a $1500.00 yearly benefit maximum. Coverage will be paid UP to the maximum benefit. Patient's out of pocket amount may be higher than calculated.**

Surgical Obturator:
***Your Insurance Company requires a Letter of Medical Necessity AND a Medical Review before determining benefits. This could take 6 - 8 weeks to determine your benefit amount. Your Insurance Company will notify you and us when a decision has been made.

Now I have a few problems with this estimate, which I didn't catch or notice while we were there.

1. They are pulling 13 total teeth, not 14. There is one right next to my fistula that never penetrated my gums. It was decided they would not remove it as they feel it could damage my nasal cavity and cause my fistula to open wider.

2. The Obturator is noted on the sheet, but there is no cost listed at all. If my insurance denies my need for it, how much will I have to pay out of pocket for it? If my Insurance approves it, will it be covered under Medical or Dental benefits? Also if approved, what percent will Insurance cover?

3. Dr. Moore made a temporary plate for my upper gums. It's just for me to wear while my gums heal over the next 6 weeks. There is no mention of the temporary plate on this estimate. He stated that its nothing more than a surgical stint, to which he added 6 false teeth. The finance lady stated they could not claim it as just a surgical stint. Ok, then what is it? How much is it? Is it covered by Insurance? If so, what percentage of it will they cover?

4. She shows my extractions as being covered under Medical, rather than Dental. In our previous conversation, she stated it could only be considered Medical IF they sedated me. They are not sedating me. So how can it be covered under Medical now?

5. As I said above, how and when will I know for sure if Insurance will even cover anything? That Pre-Existing Condition clause scares the hell out of me.

So there you have it. Hopefully I can get answers to my questions in the morning. For now, I will try to get 3 hours of sleep in. Check back Friday evening for updates!

Nerves

2007-07-12T14:58:00.000-06:00

July 12th, 2007

Tomorrow is another big day! The rest of my bottom teeth are coming out. What a day to get it done on too......Friday the 13th. Ugh. I will be left with 4 top teeth afterwards. I will be sure to take before and after photos like last week.

My nerves are getting to me already. The fear of the shots, the fear of the money I have to pay out to get there and back, the registration fee again, and another down payment of $130. I can't even pay bills, because my check is short from appointments and recent unpaid Holidays. Have to have my check for this trip up there. Starting to stress alot!

However, I have offically received my first donation. It came from a very nice man from abroad. Not sure if he wants his identity revealed, but he knows who he is, and again I'm so very thankful! :-)

If anyone has hesitations about donating through this site, I have set up a profile on another site. It's www.realitycharity.com I am listed under Health/Medical. If you click Descending at the top of the profiles, mine is near the top.

For those that don't have a Paypal account or just don't like to pay online, you can always email me at SeeStephanieSmile@gmail.com and I will be happy to send you an address to mail a donation.

If you just have questions, feel free to leave a comment or email me.

Photo Journal 1

2007-07-10T07:45:00.000-06:00

Here are photos of my mouth, 2 days after having the first 5 teeth/stumps pulled. The first two are at the Hospital just before they got ready to pull them. Can you see the terror on my face? Embarrassing, but needs to be shared.

Ouch!

2007-07-10T06:03:00.000-06:00

July 6th, 2007

Today is my first appointment in Kansas City to start pulling my teeth. I got up at 3:45 to get ready, leaving my house at 5:45 am to pick mom up. We jumped on I35 for the three hour trek to K.C.

About a half hour before reaching the hospital, I was so nervous, I felt nauseated. My general doctor prescribes Xanax to help me deal with the stress of my mouth, help me relax, and for coping the recent loss of my grandpa. The first family member that has passed my entire life.

So I decided to take a Xanax to help calm my nerves. Only .5 mg, so thought it couldn't hurt or interfere with my driving.

We arrive for appointment, register as usual, then wait to be called. They finally call me back to a dental room. Yet, another doctor, comes in to see me. Each time I've been there, it's been a different doctor. That unsettles me, as I feel like they don't know me or what's going on. We inquired why the doctor we had spoke to last week wasn't here to pull my teeth. He says it's not uncommon to have a different person each time you come in.

My nerves kicked into high gear. I was rocking back and forth in the chair. I was in pain and ready for the teeth to come out. Although the anticipation of the numbing shots, were making me shake.

We wait, wait, and wait. We see the finance lady pass by in the hallway. Mom stepped out to grab her and ask why she had never called with the list of costs. The lady admits that she forgot to even work it up. She would go work on it right then.

So we wait and wait again. Mom goes out to see if there is a problem holding us up. The lady tells her she's checking with my insurance company. Huh? She already told us insurance would not cover anything because it's out of network and would probably be considered a pre-existing condition.

Now the lady says, payment for all services must be paid up front. What??? No one told us that! Why are we here? We don't have $8,000 on us! Mom argues with the lady, reminding her that she had said we needed a very close cost total so Dad would know how much he needed to apply for, yet she had never called with the amount. Mom says, "Do you have a 401k? Do you think if you borrow against it, they give you a check on the spot that day? NO they don't! It takes at least two weeks for the process. So how did you expect us to have that kind of money in less than week?"

By this time, several staff are gathered around listening. The lady insists she told us payment was due before services began. Absolutely not true. I was hysterically sobbing. I thought to myself, here we go again. Drove all this way for nothing. Something is about to happen and once again, I will be searching for another doctor.

The lady leaves and comes back shortly. She says, "Ok here's what I found out. Your insurance will cover some of the costs, but not all. You will need to pay at least $130 today in order to pull those 5 teeth."

I had about $200 in my purse that I had not had time to deposit into the bank for bills yet. So I grab all the money from my purse and lay it on their desk....."here take it, that's all I have."

She tells me I have to come to her office to pay. I grab the money and follow her. She runs down a list of costs, which wasn't sinking in with me. I was still crying and upset. All I know is she needed $130 right now to continue my appointment that day.

I pay and go back to the dental room. The lead doctor of the floor comes in to ask what's happening. I was still crying so hard I couldn't speak. Mom tries to fill him in, but the doctor that was going to pull my teeth came in and said he was ready to start.

Mom and my daughter had to leave the room and wait in the lobby. My daughter gave me her MP3 player to help take my mind off the procedure. I asked the doctor if I could listen to it, and he said sure.

They hooked me up to the laughing gas and start to feel more relaxed. He asks who is on the radio right now. I don't recognize the artist. Then he puts the cotton swab of numbing gel inside my mouth and cheek. By, now I'm telling him the artist and song title. Feeling pretty good.

Now comes the shot. There is a long nerve that runs the length of your jaw bone, so he sticks the needle in my mouth and gives a good shot in the corner of my right jaw, right into the nerve. Oooooh, that smarts!!! A couple more shots in the gums. Uggghhh. Please be done, please be done.

A few minutes later, he begins to dig and pull. I feel pressure, but not pain. I'm focused on the music playing in my left ear. I sort of hum the song with my throat.

Four teeth and stumps are out. Just one more tooth to go, the one that's front center. He starts to pull on it, but I feel something. I quickly say "Uhhhh!" He says, "Is is pressure or pain?" I say, try it again, not sure. He pulls slightly, but that's not pressure. That is definitely pain. I can feel the roots pulling. He gives me two more shots directly around the tooth, then tries again. "Uggghhh! I can feel that!"

He leaves the room and grabs another doctor. That doctor tells him to give me another shot, but instead of straight into the gums below the tooth, to come in from the side of the gum. Wait a minute, then tries a slight tug again. "Can you feel pressure or pain?" I say, "Its pain, I can feel it all." The second doctor takes over. He gives me two more small shots, explaining this is why dentists put you on antibiotics before they pull an abscess tooth, because the infection prevents the Novocaine from working.

After waiting for those last two shots to take affect, he starts to pull on the tooth. "Owww! I can feel that!" He starts telling me something and in mid sentence, he does one quick yank! "OUUCHH!!!" He apologizes, but it's out. They had no choice but to just pull it fast, the Novocaine wasn't working. I had a total of 9 shots, plus two the last doctor gave me.

He puts stitches in my mouth to hold my gums together. This will help them heal quicker and smoother. They will dissolve on their own, but for now, they are still there.

I was hurting pretty good the rest of the day. Saturday morning I woke up, expecting to be very swollen. I actually looked pretty good. Not much swelling at all. I can barely open my mouth, as its very tender. Yawning or coughing makes it feel as though my stitches will bust apart.

Eating has been minimal. Friday night I had a shake. Saturday I had a small bowl of oatmeal. Sunday I attempted to eat some potato salad, but had to pick out all the potatoes. Monday's cuisine consisted of half a can of Spaghetti O's. Ick.

My next appointment is this Friday, when they will pull the remaining 4 teeth on the bottom.

On my way out the door from my appointment, they gave me a break down of the costs. I will list them in a new posting. For now, I will close this entry. My next entry will show photos of my anxiety riddled day, and photos of my jaw now. I'm also going to post a new photo of my roof.

Stay tuned for Part 1 of my photo journal.

My MD, Miracle Doctor

2007-07-09T20:11:00.000-06:00

June 28th, 2007

After another drive to Kansas City, we registered, and waited in the lobby. They call my name to come back. I sit in your typical dentists chair. A nurse takes my temperature and blood pressure. She asks what my pain is right now on a scale from 1 - 10, 10 being the worst. I say it's about a 6/7. She comments that my blood pressure is a little high, probably related to my pain.

Adjoined to the room is a single office. There are tons of cartoon drawings, newspaper clippings, and books everywhere. In the dental room, there's also books and clippings along the walls and shelves. There is one photo proudly displayed.

The photo is of an older gentlemen, in fishing gear, near water, holding the largest salmon I've ever seen.

All of a sudden, the man in the photo, walks into the room. It's him! It's my MD, Miracle Doctor.

His name is Dr. Dorsey Moore. Dr. Moore is a very friendly, personable man, with a brilliant sense of humor. He introduces himself to us and we start to discuss my story.

He tells us that he is twice retired. Only works 2 days a week at Truman Med, because he can't seem to stop working. He loves what he does and what he's capable of doing for others. He has worked so hard all of his life, that he even suffered a heart attack while at work about a year ago.

He's giving us his history, sort of like he feels he needs to convince us of his resume and qualifications in helping me. I have no doubt that he can help me. Even if he couldn't, I would still have nothing but the highest respect for him. He just makes you feel so at ease and comfortable.

He tells us of his 25 year career as a doctor in the military. I'm ashamed to say, I can't remember if it was with the Navy or Marines. After that, he began working full time as a civilian physician. He does everything that has to do with the ears, nose, throat, mouth, and face. I'm not sure what his official title is, but from the sounds of it, he's a reconstruction guru.

After retiring from the military, then from his full time medicine practice, he decided to stay with Truman Medical, working Tuesday and Thursdays. We inquired about his photo with the fish. For the past 14 years, he has gone to Alaska to fish every year. He had just returned from this year's trip, the week before we were all sitting in his office.

He's so dedicated and passionate about his work, that while in Alaska, he volunteered his services to the Eskimos that needed dentures.

After getting to know each other and relaxing my fears, he takes a look in my mouth. He steps out to view my X-rays. He comes back in and basically says I'll be an easy fix. He can and will give me a new mouth. Mom and I both cried.

We discussed pulling all of my teeth. The infection is not only with my teeth, but also in my lower jaw bone. The teeth have to come out soon. The easiest way, would be to sedate me in the Operating Room and pull them all at once. However, it turned out that the sedation team was booked until at least September. That was too far out, especially with my infections.

So it was decided that they would pull 5 lower teeth first, then the rest of the lowers, then my uppers. I asked if it would be possible to do "immediate dentures", which is when dentures are put in immediately after the teeth are pulled. Due to my complex mouth, this was not an option.

I expressed my concerns about having no teeth at all. How would I look? How would I eat? How it would effect my speech. He understood all of my concerns. However, my gums would need 6 to 8 weeks to heal before the dentures could be put in. Being the sympathetic, compassionate doctor that he is, he did supply a solution.

He would make a special temporary plate with 6 teeth for my upper gums. The plate could be put in immediately after the upper teeth are pulled, and it would look like I have upper teeth while my gums healed. I was elated! Sure I won't have bottom teeth, but half a mouth of teeth, is better than none at all.

He took impressions of my mouth while I was there. The upper was first. To prevent the impression material from going into my fistula and my nose, he cut down a piece of gauze and stuck it in the hole. I started speaking after it was inserted and WOW! I sounded like a different person! Letter's like S, F, T, and C's, flowed from my mouth so clearly! No more forced air sounds coming out with them. I said my name repeatedly, Stephanie, while mom just smiled and laughed at me.

He had to file the impression tray down to fit into my narrow roof. He filled it up with very nasty, ice cold goop that made me want to gag. He held it to my roof for 3 minutes. As he pulled it out, the gauze came out with it. Booooo, no more perfect speech.

Next, he got the tray ready for my lowers. As soon as he stuck the tray of goop in and pressed down on my mouth, tears filled my eyes. The coldness on my almost exposed nerves, and the pressure against my abscessed teeth, caused so much pain I thought I would pass out. He took notice of my discomfort and lightened his touch, taking the tray out the moment it had set just enough for a decent impression.

Next, he pulled out a long strip of false teeth in different shades of white, off white, and even a little brown. "What color do you want your new teeth to be?", he asked. "I get to pick!?!" Of course I wanted the whitest of whites! However, he chose a more realistic color based on my age and skin tone. Truly an artist. Smile.

He took me over to another doctor, one who would work with him on pulling my teeth. I told him Dr. Gagnon, where I live, would be happy to pull them. Dr. Moore said it was up to me, but it would be easier if I had them pulled in Kansas City so he could monitor me and my progress. I agreed.

We discussed how much all of this work would cost. They brought in the finance person to work up the costs. I was told that because Truman Medical is "Out of Network" with my Insurance Provider, that nothing would be covered. I don't have that kind of money sitting around, nor could I save up enough in time.

My mom announced that my stepdad, who I consider to really be my Dad, would apply for a loan against his 401K. It would take time to do the application, wait for approval, and receive a check. So mom asked for a very close estimate, so Dad would know how much he needed to try to borrow. The lady said it would be roughly $8,000, but to expect the actual cost to be higher. She was going to work up the exact figures and give mom a call around July 2nd.

They decide they want me to come back the following week to start removing my teeth. I mention that I have to request to get off work in advance. Mom mentions to them that my only day off during the week is on Fridays, a day that Dr. Moore doesn't work. He tells the other doctor to schedule me for Friday's and he will come in just to work with me. What doctor comes in on their day off to fit YOUR schedule? How could you not like this man? I am truly blessed to have been led to him.

So they scheduled me to return to K.C. on July 6th to have 5 of my bottom teeth/stumps pulled on my lower right jaw. That's where the infection has been the worst and the source of most of my pain.

Check back to find out how July 6th went for me. (Oh and don't forget to donate! Please? Even $5 can help make a difference in my Smile!)

She said, He said

2007-07-09T19:16:00.000-06:00

I'm going to skip a few things to get you all caught up. So the following is from April to now.

I saw Dr. Gagnon, my maxillofacial surgeon, in April. I had been fighting an infection for a month, and I was absolutely miserable. I've taken antibiotics for my constant infections so often, that it seemed I had built a resistance to them. He tried to convince me to let him pull all of my teeth. That was the only way I would be able to get rid of the recurring infections.

How does a woman, at 35, go completely toothless? Sure, most of my apprehension was over how I would look with no teeth. I've been told all my life that I'm such a pretty girl. I have gorgeous, big blue eyes. Don't know how many times I've heard, "You would be so beautiful if your mouth was fixed." (As if I was happy with the way my mouth looks.)

A much bigger concern of being without teeth, was how it would effect my speech. Some people already have a difficult time understanding me. I constantly have to repeat myself, especially over the phone or at a drive-up window. I have to battle my fistula to pronounce some letters, so having no teeth to press my tongue against when I speak, could only make it so much worse.

I fought Dr. Gagnon on pulling them that week in April. I had no confidence that I would find that special doctor who was willing and able to create a new mouth for me. For all I knew, I could go 5 years with no teeth. How do you eat? How would I speak properly? How would I look? How many times would I be asked, "What happened to you?"

So Dr. Gagnon's assistant, Jennifer, said she would make a few calls to Kansas City, specifically to the University of Kansas Medical Center. She seemed hopeful that someone there would be able to help us.

The following week, she contacted my mom with a number to call. She was given the name of a doctor who had the capacity to make a special set of dentures. Mom called the number she was given, but the name of the company didn't fit. It turned out to be an organ donation center. Mom was confused, but asked if there was such a doctor there by the name she had been given. There was. However, the doctor only took patients if another doctor spoke directly to him. You can't walk off the street and be seen by this doctor.

Now, I'm sure a lot of you are thinking, well than your doctor must have called him for you, right? No. Why not? I have no idea. The forces seemed to still be against me.

However, that center did give my mom another number to call. They in turn gave her a different number to call. This went on and on through out the afternoon.

Mom grew weary and became frustrated. She was now experiencing the same dilemma I had been battling alone for 5 years. Trying to get people to listen, understand, and help. She didn't give up though. She kept calling each new number she was given.

Finally, she reached Truman Medical Center in Kansas City, Missouri. She explained my whole situation to the lady on the other end of the phone. Told her about my birth defects, my fistula, my infections, and exactly what we were looking for and needing. The lady set an appointment for me with a doctor at 1pm on Friday, June 1st.

Kansas City is a three hour drive from where I live. So mom, my daughter, and I packed a few snacks and hit the road that morning. Traffic wasn't too bad going up. I got a little turned around, but found the hospital. Once we arrived, we discovered I had to register, which took about 20 minutes as they were training a new employee. So I was officially late to my first appointment.

They called me back, so mom and my daughter went with me. The nurse asked what I was there for. I looked at mom, because I didn't even know the doctors name that I was supposed to be seeing.

She explained to the nurse why and what we were there for, but the nurse said we were in the wrong place. They went back and forth, about how mom had explained my whole story to whoever she made the appointment with, but it didn't seem to matter. The doctor that I had been "scheduled" to see didn't even work on Fridays. Never had!

I started crying, seeing past broken promises dancing around my head again. Oh, how can this happen again? Why can't anyone help me? Why is it so hard to find the miracle doctor I need?

The nurse felt bad that we had driven 3 hours to get there, for what seemed like nothing. She said "Give me a minute, let me see what I can do." Soon a tall, handsome, Dr. Myers walks in the room. He wanted to hear my story. So mom and I went through it quickly......my path to find a much needed specialist, the let downs, my pain, my setbacks.

He looked at the X-ray, looked in my mouth, and said there was a doctor who worked there that had the ability to do what I needed done. However, he only took patients directly referred by another physician. Dr. Myers wrote the referral on the spot for me.

The doctor he was referring me to, only works two days a week. So I would have to make another appointment to come back. With my job, you have to put in for a day off at least 3 weeks in advance, in most cases. Even then, it has to be approved, so your not certain you will have it off. You can call always call in, but it counts against you. More than 3 call ins, and your at risk for losing your job.

So we scheduled my next appointment for 3 weeks out on June 28th, and prayed I would be able to get it off. I did.

Find out what happens June 28th, in my next post.

Behind

2007-07-09T07:20:00.001-06:00

I'm a little behind on my postings. I've been so busy with work, trying to spread the word about my blog, and just everyday family life.

There is LOTS to update you all on!! Unfortunately, work calls, so I don't have time this morning.

A special Thanks goes to Ole of CleftWorld. He's been of great help in regards to giving me advice on how to get the word out, updates that I should make to my page, etc. Please check out his site for lots of information on Clefts. There are various news articles, interesting Cleft facts, and even a list of Celebrities with Clefts! One that I think might surprise you!

www.cleftworld.com

I promise to fill you all in this evening, so please check back! You will hear the latest on my journey, more photos will be added, and new changes are coming......stay tuned!

Needed Reassurance

2007-07-02T21:35:00.000-06:00

In an effort to reassure everyone that this is a legitimate story and my need for repairs is very much real, I have swallowed my pride and posted a photo.

If you look to the right, just under my Digital X-ray, I have posted a photo of the roof of my mouth. It's very embarrassing to show you and share with the world. I've taken great measures my whole life to make sure no one ever saw it. Simple measures like smiling with my lips closed tightly, laughing with my hand covering my mouth, etc.

This is the most difficult post I have made so far. It's humiliating, but it's a big part of who I am. So far there has been nothing I can do to change it. My last resort is by calling on everyone I can reach out to and hope they will be compelled to help by making a donation. Donations that could very well lead to helping Stephanie Smile.

It's not in my nature to ask or plead for help, but I'm in complete desperation. If I can muster up the courage, I will post more photos later. For now, this was a huge step for me, one that has shattered my self confidence.

For those that keep checking back, thank you for sticking with me so far.

Fast Forward

2007-07-02T18:59:00.000-06:00

The whole disaster with D.A. happened in 2005. Through 2006, I continued to send out emails to random dentists, with no acknowledgement from any of them.

So fast forward to 2007. Infections have been a recurring nightmare for me. My teeth are in such poor condition, that I constantly get abscesses. I recently learned that not only are my teeth infected, but my lower jaw bone is infected as well.

January 2007, I had major mouth pain. I went to an emergency dental office, that I had been to before with an infection. The dentist said he would give me antibiotics and some pain relievers, but that they would not see me again in the future. It was simply time to have my teeth removed if I ever wanted to stop the infections from coming back.

Having only 8 somewhat decent teeth, I didn't want any of them pulled without something to replace them. How would I eat if I just pulled them all? How much worse would my speech become if I was completely toothless? Plus, how ridiculous would I look all gummy. I'm only 35, I didn't want to be toothless.

Not knowing how I would fight infection again, I only took my antibiotics until they gave me the needed relief. I hoarded the rest of pills so I would have some to start taking again as soon as I felt an infection coming on.

February, I was in horrendous pain. One of the worst infections I'd ever had. So I called another dental office and made an appointment hoping to get one tooth pulled, the one I believed to be the main culprit. DH as I'll call him, said all my teeth need removed. I explained that I was not comfortable just pulling my teeth without something to replace them. DH thought it might be possible for them to make a set of dentures for me. I told him that was exactly what I had been trying to have done!

DH decided the only way he would build dentures was if someone would repair my fistula, the hole in my mouth. I told him I had seen Dr. Gagnon a few times over the years, so DH made a referral appointment for me to go back to Dr. Gagnon. However, it would be a month before I could get in to see him.

I suffered through my infection, taking antibiotics like they were almost extinct. Finally, in March, my appointment arrived! Dr. Gagnon didn't seem pleased that no progress had been made with my mouth over the past 2 years. Finding someone to work on me had proved extremely difficult, but I don't think he understood the challenges I had faced in finding someone.

Dr. Gagnon said, like everyone else, I need to pull my remaining teeth. I told him that DH said he would make my dentures, if he would repair the fistula.

Dr. Gagnon said repairing the hole would be a lengthy process, that he felt would be unnecessary and very difficult for me to endure, when a special denture could just seal the hole. Repairing the fistula would call for pulling all the teeth, breaking my jaw bones, bone grafting to join my two top jaw bones, wiring my jaws together, and healing for almost 6 months. Dr. Gagnon just felt there was an easier way.

He personally called DH and tried to convince him that a special denture would solve the problem of the hole, without putting me through the major surgery. At that point, DH backed out completely. He no longer wanted to be involved.

Mom and I explained to Dr. Gagnon that I was worried about letting him pull the teeth without a doctor in place to build my dentures. His assistant, J, said she would make a call the following week to a dentist in Kansas City. J called my mom that week and gave her a number of place in Kansas City to call.

My mom called the number she was given, but it turned out to be an organ donation center. They gave her another number to call, then she was given another number, on and on. Finally she reached someone! She was able to get an appointment for me 3 weeks out, in Kansas City, Missouri.

It would take us just over 3 hours to drive to Kansas City. Would we make it? Would my MD be there? Is my life finally about to take a positive turn?

Find out next time......

Frustration

2007-07-02T06:11:00.000-06:00

Once I had emailed Oprah, I decided it would be easier to email local dentists, rather than calling and explaining my situation on the phone. A majority of the time, the actual dentist won't even get on the phone to talk with you.

So I browsed the Internet for local dentists. I was averaging about 3 or 4 a week that I would send my story to. None of them were responding to me. Meanwhile, my mom printed an application for me to submit to a popular tv show, Extreme Makeover. It included pages and pages of information to complete, required a video submission, and undergoing a psychiatric evaluation. The process would have been grueling just to send in everything and HOPE that I would even be considered. I had no video camera either. Even if I were to be selected, I didn't want a complete body overhaul. I'm pleased with everything about me, except my mouth. I didn't need to waste resources for implants or a thigh reduction. Not only that, but I would have had to take a leave of absence from my job for a lengthy period, which I couldn't afford to do.

So I kept emailing random dentists, hoping someone would answer. Finally, that day came in 2005. An office manager from a dentist in a neighboring city responded. The dentist she worked for was intrigued by my email and wanted to meet with me. I will refer to him as D.A.

We set an appointment and I drove to see him. While sitting in the lobby waiting, there was a huge flat screen monitor up on the wall, rotating photos of before and after transformations of his other patients. It was quite impressive to see what D.A. had accomplished with some of those people.

They called me to the back and I sat in a chair. D.A. walked in, smiled at me, and we began discussing my email. D.A. was furious that no other dentist had acted to help me. He said, "With the technology that dentists have access to today, there was no reason why I should be living with a mouth like mine." He had seen a few people with worse conditions than I was in and said it would be so easy to fix my mouth. He told me it would not be an easy road by any means, but if I was committed to the process, he would be too. I said "Absolutely!"

He ordered a panoramic Xray of my mouth and took a look. He said that he would repair my mouth, make dentures, and work to give me a perfect smile and teeth. Not only that, but he was going to do it all free of charge! I cried and thanked him over and over.

We made an appointment for me to come back the following week. My mother went with me, as she wanted to meet him. At that appointment he did a series of tests on my jaws. Over the years, my jaws have worn down because they are not aligned and even. He explained that the way my bottom jaw was attached to my skull, that it was most likely the reason for my recent migraines.

He again expressed his frustration over the lack of care from others in his field. My mom mentioned that we had seen DJ and how much he wanted to even touch me. D.A. laughed and said he knew DJ. He said, "Never trust a man that walks with a limp due to the weight of his wallet." I was surprised to hear D.A. make a statement like that about one of his own colleagues.

D.A. also mentioned to my mom that he belonged to a board of area dentists that review special needs cases. They will discuss cases submitted and pick a few each year to do at no charge. He was going to submit mine to the board. At the time I didn't quite understand why he was going to submit it to the board, since he already said he would be doing it himself. Didn't make much sense, but I didn't question it.

Meanwhile, there is a tooth that has not broke through the gums. It's right under my left nostril, next to my fistula. D.A. did not want to touch it in case it didn't come out as smoothly as it needed. So he said he would send me to a Maxillofacial Surgeon to have it done. The surgeon he recommended was Dr. Gagnon. I was elated, because I knew Dr. Gagnon already! He had pulled some teeth for me at no charge prior to my visit with D.A.

We walked to the desk in D.A.'s office and he told his office manager to call Dr. Gagnon and arrange for me to have that tooth removed. She told my mom and I, that she would schedule the appointment for me, then call to let me know when my appointment would be.

About a week and a half later, I still had not heard from anyone. Mom had asked if I had found out anything about my appointment with Dr. Gagnon. No, not a word yet. The next day, I received a letter in the mail from D.A.'s office. It said that I had neglected to show up for my appointment with Dr. Gagnon, therefore I was obviously not serious about having my mouth repaired. Due to that circumstance, D.A. would no longer be offering his services to me.

My heart sank. I started crying hysterically. I called D.A.'s office immediately and asked to speak to him. The lady on the phone said he was not in. My husband arrived home and I showed him the letter. He picked up the phone and called D.A.'s office. The lady would not let him through to speak to D.A. He asked her to have D.A. return our call. A few hours went by and nothing, so my husband called again. This time the office manager answered. He explained to her that we had received the letter, and we didn't understand it because no one had informed me that an appointment had even been set with Dr. Gagnon yet.

She told my husband that she informed me of my appointment time before we even left the office at my last appointment with D.A. That was completely false! She had not even called Dr. Gagnon while we were there! She told my mother and I both, that she would call later and let me know. Now she's telling a different story. So again, he asked to speak with D.A. as he wanted to make sure D.A. was aware that I did not skip my appointment, but rather didn't even know one had been scheduled yet.

After he was done speaking with her, I called Dr. Gagnon's office to see if there truly had been appointment made for me. Indeed there had been, it was 4 days prior to receiving the letter. I asked why no one from Dr. Gagnon's office had called to tell me that I had an appointment, and she informed me that D.A.'s office should have called me. D.A's office was saying that Dr. Gagnon's office was responsible for contacting me, yet the manager was also saying she had already told me. So which was what?

We called D.A.'s office again to inquire about why no one had called me to even ask me why I missed the appointment with Dr. Gagnon. D.A. got on the phone and spoke to my husband. He immediately told my husband that he was harassing and threatening his staff and if he called his office again, he would call the police. What on earth is going on??? My husband did not threaten anyone! Nor was he harassing anyone! He was trying to find out what happened, explain to D.A. it was all a miscommunication, and beg him not to back out on me now.

I told my husband to let it go. It wasn't worth having the police get involved, and if a doctor is going to throw out statements like that over something that his staff lied about, I didn't want him working on me anyway.

We talked to friends and family about the situation. My mom conferred that NO ONE had set an appointment for me with Dr. Gagnon while we were at D.A.'s office. The only thing we could rationalize from the whole situation was that perhaps D.A. realized what a complicated procedure he committed himself to, the costs he was going to endure, and the money he would lose from paying patients while working on me. I had campaigned for help for over three years, so why would I blow this opportunity? What other explanation could there be?

I was destroyed after that. I thought, this is it, I'll never get a new mouth. I let it go for awhile, but my teeth were getting worse. By the 4th year, I still couldn't find a dentist to do fillings or root canals. No one wanted to be involved, but I had to keep fighting for myself.....so the emails kept going out. Would anyone else respond again? Find out soon......

Five Years

2007-06-29T18:40:00.000-06:00

Over the past 5 years, I have searched for my Miracle Doctor, MD. The person who would be able to provide a solution. The person who understands the pain I endure. The person who would see me as an unfinished work of art.

At the beginning of my search, I didn't have health insurance. I had a dentist who I went to for a root canal. He suggested I see a local Maxillofacial Surgeon, Dr. Gagnon. My mother paid for my office visit with Dr. Gagnon. He was very nice from the first moment we met. Very sympathetic to my situation and understood the urgency to have my mouth repaired. Knowing that I did not have health insurance, Dr. Gagnon offered his services of pulling my teeth free of charge. What Doctors do that these days?

I felt a big sensation of relief after that first visit with him. Finally, I was going to have my mouth fixed and look like a normal woman. Dr. Gagnon said, find someone who will make a partial, or denture, and I will take care of removing any or all of your teeth. Wow!

It was a very slow start on my journey to find my Miracle Doctor. While waiting for Doctors to return my calls, two teeth became badly infected. I called Dr. Gagnon. He pulled them both, keeping his word, at no charge. Of course while I was there, he pushed me to find my Miracle Doctor.

I started making appointments with regular dentists, orthodontists, specialists. During the first two years, I couldn't even get a dentist to do a filling, let alone a denture or implants. They were all afraid of the complexity of my mouth, they wouldn't touch me. Some said it was pointless, the teeth just need to all come out.

By the end of the 2nd year, I was desperate. I had also become engaged. I wanted so badly to have a Smile to show off in my wedding photos. To this day, I have no pictures of myself with my mouth open. It's embarrassing, it's shameful, and quite frankly it's disgusting to see.

I truly believe I have missed out on great job opportunities because of my mouth. With my speech, people tend to focus on my mouth when I talk. Employers don't want someone with a speech problems and a bad looking mouth, to represent or speak for their company.

I was having the worst time in my entire life finding employment. I was planning a wedding in which I, like most brides, would be the focus of in pictures. I was urgently trying to find someone that could save me, and my big day. As I sat at home, I was watching Oprah one day. It would become of one her most famous shows, as she gave everyone in the audience a brand new car.

I thought to myself, if she can do that, can she help save my mouth? So I jumped on the computer and emailed my story to her. I wasn't asking her to pay the bill to get my mouth completely fixed. I was simply hoping she would love to know more, possibly help me find a sponsor and doctor, and then show my transformation from start to finish. She's a humanitarian, she's a daytime talk show host, and I felt my situation was the perfect the way for her to help and benefit her show with a touching story and a happy ending.

My email went unanswered. My wedding day came and went. All the pictures from that special day are beautiful photos, with my mouth closed. Every time I look at them, all I see is a reminder of bad, painful teeth that prohibit me from Smiling. It took my husband two years to convince me to have our wedding photos printed and framed. He's proud of them, but I don't enjoy them like I should.

Soon after we were married, I was able to get on his health insurance. I also finally landed a job. Not the job I really wanted, but a job I really needed. I'm not seen by clients or customers, I don't have to speak to anyone, there's no telephone to answer, I just sit alone and do my work with my mouth shut. Two and a half years later, I'm still in the same job, which I love because I don't have to face anyone publicly or try to make people understand me on the phone.

Before I was finally insured, yet another dentist had referred me to a Prothodontist. He's the only one we have in my city. (For several reasons, I will only refer to him as DJ.)Mom and I went to see him and I was very excited and hopeful. That is until I stepped into his office. Hi-tech toys everywhere. He had the full leather dental chairs, a computer next to each dental chair, a very large Flat LCD TV in the waiting room, and of course one hooked to the dental chair in each room. As we were waiting, his employees were talking about the trip that the entire office was going to be taking to Las Vegas.

When DJ walked into the room for my visit, I felt tension immediately. I can't explain what it was, but I did not feel comfortable. We explained my current state, explained that I was in pain, explained what I was hoping to accomplish. He took one look in my mouth and commented on how poorly my palate had been built. (What? No other doctor had ever said such a thing?!) He said there was a risk that pulling my top teeth could cause my palate to collapse. He stated that the top fixture would be the easy part, but the bottoms would be the real challenge. (What? My top has a hole, my top has jaw bone missing, my top has a surgically placed palate! My bottom was normal!)

DJ said, get all your teeth removed except the bottom two eye teeth. I can make a top denture with an opturator to seal your hole. DJ could also make a bottom denture, but he said my gums are too shallow and it probably won't stay in place. Not a problem though, because he said we could always insert tiny implant snaps if we needed.

DJ wanted to know what kind of insurance I had. Well I had none at that time. He chuckled at me and informed me that this would not be a cheap process. I was not laughing. He estimated that the total cost would be between $20,000 and $24,000. I certainly don't have that kind of money. I asked about payment plans, but that was not an option for his services. In fact, he was requesting $8,000 cash up front to even begin any work. He referred us to CareCredit for the balance. I would not qualify. My mom applied for it and was accepted, however the interest rate was incredibly high. Not only that, but she was retiring by the end of the year.

I just couldn't let my mother put that much on a high interest bearing account near her retirement. My hope was shattered, but it didn't end there. The past 3 years coming to a blog near you.

Quality Of Life

2007-06-25T19:08:00.000-06:00

The older I have gotten, the worse my mouth has become. I come from a family with genetics for bad teeth. My mother was in full dentures well before she turned 30. My aunts have had numerous caps, root canals, fillings, etc. No matter how much we brush, they decay. Soft, weak, and thin enamel plagues us all.

So over the years, my teeth have broken at the gum line, have decayed from the gums up, have just needed pulled. I paid big bucks for 2 root canals, only to have the teeth break off within months. Brushing my teeth the past two years has almost become unbearable. The enamel is so worn, that my nerves are not protected anymore.

Along with the bad teeth, I have the issues with my palate. The gums around my fistula are tender. They are often swollen and red. I also get sick alot. It's been determined that I'm more prone to infections since my nasal cavity opens up into my mouth. Just a breeding ground for bacteria. Headaches are very common for me as well. Over the past 7 years I've been suffering from Migraines. Headaches so intense I can't stand light, noise, or even having my eyes open.

What is eating food like for me? Very limited and often times painful. I drink fluids more than I eat food. I can't eat chips, no thick or chewy meat, no carrots, no apples, no crunchy peanut butter and cereal has to be a little soggy. Some days I can't handle more than one snack or meal, because it causes so much pain to eat. Last night I tried eating some buttery shrimp at a Chinese Buffet, but couldn't. I was slowly chewing 1 piece of tender shrimp, and it was like holding a fork to a metal filling.......sharp, excruciating pain.

Eating soup is a circus act! Sometimes when I try to eat soup, as my tongue presses against my palate, it forces the soup up into my nasal cavity, which then trickles out of my nose. It's a very attractive sight. Smile. Even ice cream or pudding can become a similar feat to the woman shooting milk from her eye ducts.

I constantly get food stuck in my fistula. I've had to dig out whole corn kernels, chunks of egg, green beans, just a smorgasbord of food items easily get lodged in the hole.

This is a big beginning into how I live daily. There is more to come so please stay tuned......

Development of a Smile

2007-06-12T18:36:00.000-06:00

Welcome to Stephanie’s Smile. Stephanie, me, is beginning a mission to find and seek help from others in an effort to have a normal, healthy life and smile. Something that I feel alot of people take for granted.

Over the past 5 years I’ve written to everyone from my local news agencies to Oprah Winfrey. Not one of them even acknowledged that I had written. So today, I write to you. If your reading, that means your even slightly interested in hearing me. I Thank You for taking the time to let me speak. If I do nothing but educate you, then my time has been worthwhile. If you share a commonality to my situation, I would love to hear your voice too.

Here’s my story.

I was born in Kansas in 1971. (I’m 35 for those trying to do the math. Smile) I was born with two birth defects that some people know very little about, although alot of you may have seen a person inflicted with at least one. Perhaps you just didn’t know or understand what you were seeing.

First is a Cleft Lip, more commonly referred to as a Hairlip. Medical definition: any of the clefts between the embryonic prominences that normally unite to form the face. Basically my upper lip was split and extended into my nasal cavity.

Second is a Cleft Palate. Definition as given by The Free Dictionary: Cleft palate is a condition in which the two plates of the skull that form the hard palate (roof of the mouth) are not completely joined. The soft palate is in these cases cleft as well. In most cases, cleft lip is also present.

For the first several months of my life, my family fed me with an eyedropper. Since I had no palate, I was unable to suck from a bottle. My mother sought care from a wonderful doctor, rest in peace, that surgically repaired my cleft lip and then months later, my cleft palate. Seeing others with a cleft lip, I feel fortunate that I look as well as I do. Especially since we didn’t have the medical advances that we do today. Upon meeting me initially, most people assume I was injured in a car accident or something. (I also have the luxury of using makeup to help cover my scar, which gives me a little more confidence in my appearance.)

I underwent 4 major surgeries from age 1 to 12 to repair my cleft lip and cleft palate. My mother did not always have insurance once my father walked out on us, so she turned to the Shriners for assistance. If it had not been for the Shriners and the work they do, I can’t imagine how I would look today.

After my first surgery was complete, the doctor told my mother not to expect for me to get teeth. There was a slim chance that teeth would come in since I had no roof in my mouth, which therefore gave me very little gums on the top. I did get teeth and terrorized my mother with the teething process just like any normal baby would. Smile.

However, my teeth did not come in normal. Many of them, actually most of them, came in crooked or at an angle. Some came in crowded behind others. This made dental care very difficult, as it was hard to get them clean. I began to get cavities very early in life. Mostly on the teeth that came in weird or in the back of others. It was easier to just pull them instead of filling them, since they weren’t where they should have been or if they were poking out at an angle rather than down.

Based on what you've learned so far, are you starting to get an image in your mind? This is the start of the picture I will paint for you. More to come.........Smile.