2017 NFED Family Conference Recap

The 2017 NFED Family Conference has already come and gone – in a flash, it seems. This year it was held in Falls Church, VA, which is right outside of our nation’s capital – Washington DC. The day before conference was Advocacy Day, and many NFED families went to Capitol Hill to speak with their state representatives about mandating that dental treatment be covered under health insurance.

I won’t recap every second of the conference – just point out some of the highlights.

Highlight 1: Reuniting with old friends!

Now that I’ve been going to conferences for 6 years straight (except for last year, which I skipped), it’s crazy cool how many people I actually know! Of course there’s my adult EEC crew, Norma’s Canadian entourage, my mini-me – Ally, and her family, and all the other adult parents of EEC kids (most of whom are not much older than me).

There’s also a lot of youngsters who I met when they were just little tykes, and who are now getting so big! Julie, who once cried when I tried to hold her, now sought me out to say hello! I reunited with my two Sams, although I only have a picture of one of them. The boys I met at my first conference are all teens now and towering over me.

Of course the are plenty of other adults I enjoy reuniting with – I don’t want to try and list everyone here for fear of missing anyone. But you know who you are!

Highlight 2: Meeting new friends!

I was excited to discover a mother/daughter team from Connecticut at the conference. Not only that, but the daughter has EEC! Doubly exciting, since we hardly ever get New Englanders, much less Nutmeggers at the conferences. I will definitely be getting in touch with them so we can get together locally.

Another new EEC person was 9-month old EJ, who was there with his mom Iris. Iris introduced herself to us by announcing that she had Facebook stalked all of us. If she hadn’t been a mom of a young affected boy, this might have been super creepy, but we all laughed and then fought over who would get to hold EJ next.

I’ll let the photos do the rest of the talking – and let me say a quick shout-out to Iris, Caitlin, Terri and Suzanne for sending me most of these pics. I think only about 4 of them were mine to begin with. And thank you Bridget for the picture of Sam and I. 🙂

After the conference was the Rally for Ally. I had hoped to get to chat with a lot of people there who I hadn’t gotten the chance to talk to at the conference. However, about halfway through, it started torrentially downpouring, and I ended up heading back to the hotel with the MacDonald clan. We got dinner in the hotel restaurant and then it was time for me to catch my plane!

Next year the conference is going to be in Oregon! I’m already trying to figure out how much time I can get off from work so that I can make an extended trip out of it.

Temporary Discomfort

I got my temporary lower bridge last week. It is a strange feeling to have something foreign in my mouth. Despite having had all kinds of weird apparatuses (I really feel like the plural of apparatus should be apparati, but apparently it’s not) in my younger days, I can’t say I welcomed the introduction of this piece.

These past few days have been filled with anxiety. First, I wondered why I thought it was a good idea to even get a temporary, when I could have just kept wearing my slightly broken lower bridge until we decided what to do. Because we still haven’t decided whether to fix the existing one or make a whole new one.

If you’ve ever had braces, or any kind of dental device, you know it takes some getting used to. This one is pretty snug, but there are a few points that seem to be pressing against my gums unpleasantly. One edge is rubbing at the crease where my lip meets my gum, causing a sore. Of course it’s the weekend so I can’t just go in and have him sand down that piece. When I try to eat with it, there’s this unpleasant squishing feeling as it mushes against my gums with every bite.

It’s bringing back memories of my younger days when I had to wear these kinds of things all the time. The mild taste of acrylic, the dull ache of pressure when I first put it in. The nagging sores where the edges rub. I must have much less patience now, because it’s all I can do to keep it in my mouth the whole day.

I know that if I can just bear through these first few days I will get used to it, as I have gotten used to all the other dental situations in my life. And I try to remember poor George Washington with his uncomfortable dentures, and realize that I am lucky to live in this day and age where my dentist isn’t cobbling together some mix of animal and human teeth for me to wear.

Another point of anxiety is wondering if I can get my insurance to cover any of this. My dental insurance maxes out at $1500. Which is nice if all you need is one crown, right?

In other news, I started listening to this audiobook:



Ever since I was a very wee lass, I have been terrified of internal organs. It’s a running joke in my family that I can’t even look at an animal heart, much less a human heart, or any other part for that matter. I have had nightmares about being in an operating room and needing to perform surgery on someone or being forced to participate in an autopsy (as the person wielding the knife, not the person on the table).

My fear has lessened as I’ve gotten older, probably thanks to gratuitous violence and gore on TV and in movies. But I am still pretty creeped out at the thought of body parts or of dead bodies. I suppose a great deal of this fear has to do with simply confronting my own mortality. I also suspect there’s a part of it that hearkens back to my earliest days in the hospital and in surgery and that feeling of a loss of control and surrender to the doctors and hospital staff.

So anyway, I’d had my eye on this book for a while and finally got to it. I’m only about three chapters in but so far it is morbidly fascinating and I have not yet had to stop in horror. Perhaps this will help me overcome my fears a little more.


A Life in the Dentist’s Chair

On a regular day, the history of my mouth isn’t something I even think about, but the moment I walk into a dental office, that familiar smell nearly knocks me to my knees with dread. Memories of countless times before, sitting anxiously in the waiting room, flipping through magazines, wishing I was a model with naturally perfect teeth, wishing I was anywhere but there.

To say I’ve had a lot of dental work is a bit of an understatement. I’ve already written about some of it, and the anxiety I developed over the years in my post Oral Fixations. You would think that having been in the dental chair literally hundreds of times in my life would mean that I would approach the chair like an old friend. Not so. Not so at all.

Tomorrow I am having a consultation with my new dentist to talk about updating my bridgework and fixing my bite alignment. I really do want to do this. My jaw clicks when I chew and it’s uncomfortable. My bridgework is nearing 20 years old, and could use some refreshing. I want to be able to chew my food comfortably again, and, if possible, do it more gracefully.

In preparation for tomorrow’s visit, I was looking through some of my old dental records. I came across some x-rays and other weird things so I thought it would be fun to share. It reminds me of how far I’ve come, though looking at some of my earlier x-rays makes me kind of sad. I wonder if I was going through all this now, if they could have done more to save my natural teeth, and perhaps eliminated the need for 10 implants. I’m told that they would never do so many implants so close together now. But I’m also told that my doctors did a great job on my mouth, so that is good to hear, and I suppose it means it was all worth it.

Walk with me now, through some of my mouth’s greatest adventures.


My first dental appliance – at least the first that I still have in my possession. This was the obturator that Mom and Gram had to wrestle and hold me down every morning to put in. It fit across the roof of my mouth and closed the hole in my palate so that I could drink my baby formula. (I have no conscious memory of this happening.)



A snippet of the new patient form my mom filled out when I started with Dr. Prusak. Thank goodness for him. He was so kind and gentle and he really knew how to handle a scared little girl like me.


Pano of my 5-year old mouth. Look at that beautiful bilateral cleft! My eye sockets look misaligned because I moved my head during the x-ray. I actually had a lot of teeth for someone with ectodermal dysplasia. Notice the creepy orbs with adult teeth buds in them in my lower jaw. I was probably scared out of my mind getting this x-ray, but I have no memory of it now.


Dr. Bond created this to push my front teeth forward and my canines outward. It worked. It was attached to my upper arch with brackets on my back molars. I couldn’t take it out. I spent a lot of time working food out of it with my tongue after meals.


Heres that contraption at work. My two front teeth started out twisted and pointing inward. Dr. Bond devised the metal sculpture to push those teeth forward. Every time I saw him he would adjust the wires just a tad until my teeth were finally in position, which it looks like they are here. This was before the bone graft to close my clefts, obviously.


Another pano at age 12. Post bone graft. I was already sporting a mouthful of metal. You can see that some of my molars were still baby teeth with no adult teeth behind them.

Fast forward about 20 years – post LeForte Osteotomy and post implants…


This is about how my mouth looks now, give or take a root canal and a crown or two. Talk about a metal mouth. I still have 9 real teeth, though they have been enhanced by crowns and root canals…


This is a plaster model of my recent mouth situation. (They look like horse teeth.) The bottom ten teeth are part of a bridge that is screwed in to my jaw on 6 implants, and the top six teeth are a bridge that is cemented onto the top 4 implants. Only my molars in the very back are what remain of my natural teeth.

I expect I will be getting another pano x-ray tomorrow. If I can get a copy of it, I will definitely post it. Of course I will post about whatever ends up happening with my future dental work too.

You may be wondering, after seeing my current model, what I could possible still need to have done. Well, the top bridge has a terrible habit of coming lose and falling off. And you can’t tell from the model but there is a slight gap between the top of my bridge and my gums, which means whenever I eat, food squeezes through and nestles in the cracks between my teeth. Since they are fake, I can’t feel it, though I have learned to constantly be checking my teeth for bits of food, it’s really not ideal, and makes for some awkward social moments.

Also, as I mentioned – my jaw alignment has somehow fallen out of whack. And I’ve broken two teeth off the bottom bridge… because it takes three licks to get to the center of a tootsie roll pop… I can’t resist biting things I shouldn’t! 🙂

Stay tuned for whatever’s next in my dental adventure… xx

Where it all began – The story of my birth.

It was a dark and stormy night…

No, just kidding.  It was a sweltering midsummer afternoon when my mother’s contractions began.  My father’s cousins had come over to swim in the pool that day and through the window my mother could hear them laughing and splashing as she lay on the bed.  She would have been out there with them, cooling off from the heat, but she hadn’t felt so good and needed to lie down.  When my father came home from work a couple of hours later, he would take her to the hospital where I would make my debut.

My birth was a greatly anticipated event.  Not only was I the first child for my parents, but I was the first grandchild and first great-grandchild for all parties involved.  Everyone was waiting with bated breath.  Because my mother was young and healthy and there were no known health issues in our family, she had not had any ultrasounds or prenatal testing that would have indicated anything was amiss.  They didn’t even know if I’d be a boy or a girl.

Labor and delivery went as expected and I came into the world at 11:44 pm that summer night.  It was immediately obvious that all was not “right” with baby me.  They allowed my mother to hold me for a few minutes before taking me away.  While a cleft lip and palate was not an unheard of birth defect, my “clawed” hands and feet, sparse hair and eyelashes were cause for concern.  The doctors wanted to examine me further to determine if I had missing or deformed internal organs or mental deficiency.

My mother was taken up to her room without me.  My father went home to share the news with Gram and his cousins who were waiting to hear.  My mother called her mother to let her know that I had arrived but that there were some unexpected complications.  No one would tell her anything, so she didn’t know what else could be wrong with me besides the obvious.

It would be a long, lonely night.  At some point not long after she had settled into her room, they brought in another woman who had just given birth.  She had her baby with her, and all night my mother could hear the mother and baby on the other side of the curtain, cooing and bonding with each other.  Meanwhile, she had no idea where I was or what was going on. It wasn’t until early the next morning that I was brought in and she could finally hold me again.

Later that morning a plastic surgeon came in to talk to them about cleft lip and palate. The doctor was old and what he said was blunt.  “Your daughter will never look normal.  The sooner you accept that, the better.”   Despite this harsh diagnosis, he was the one who referred my parents to the cleft team at St. Christopher’s, and the skilled hands of Dr. Hulnick.  It was also sometime that morning that someone came in with pamphlets from the local AboutFace organization, which was a support group for people with various facial deformities.

Within the first week of my life, my parents took me to see the cleft team at St. Christopher’s, which was associated with Temple University.  This would be the first of many times I’d endure a full day of examinations.  The team made my first palatal obturator – which was an acrylic plate that fit across the roof of my mouth and allowed me to drink without aspirating.   (More on all this in a future post!)

Of course I don’t remember any of this.  I had to call my mom and asked her for the details.  Growing up, I’d always known basic facts about my birth, like how I’d been born at 11:44 pm, and that I surprised everybody with my birth defects, but I never really asked my mom how she felt.  How anyone felt.  I mean, was there some level of disappointment that a perfect child was not produced?

She said she remembers feeling fearful and overwhelmed.  She wondered how she would be able to provide everything I needed.  There was a lot of uncertainty about what my diagnosis meant, but there was such joy at my arrival that it outweighed any negativity.  Nana, (my maternal grandmother) was really supportive.  She was a nurse, so she was battle-hardened when it came to medical stuff.  She came up from Maryland and stayed with us for a week after I was born.  My other grandmother, (Gram), lived with us (technically, we lived with HER, but I didn’t realize that until I was much older), so  she was there every day and helped to hold me down while my mom applied my obturator and cleaned the junk out of my nose.

I asked my mom if she ever felt uncomfortable taking me out in public before my lip repair.  She said that she wanted people to see me and that there was nothing to hide.  She told Gram, “let people look if they want to look!”  They took me to the mall, to the grocery store, the bank – everywhere.  People would sometimes ask if I had been in an accident or if I’d gotten hurt.  She thinks it was good for her to talk about it.  Only once does she remember losing her cool.  While waiting in line for a teller at the bank, she noticed a man who would not stop staring at me.  He never said anything, he just stared.  Finally she snapped at him “Would you like to take a picture?”

It was interesting talking to my mom about this.  She began to recall things she had forgotten.  As we talked, I realized that she might not be remembering everything with exact accuracy.  For example, she recalls being told about the NFED soon after I was born.  However, the NFED wasn’t started until 1981.  She probably found out about it through a doctor or counselor at a hospital when I was still quite young.

I have some of the records from my birth.  No pictures, but here is my Discharge report.  I think the use of the term “clawed hands” makes it sound like I was a gryphon or something.  Which is actually kind of cool.

Souvenirs You Never Lose

Every once in a while I think of that Goo Goo Dolls song, ‘Name’, which has the line “Scars are souvenirs you never lose The past is never far.” It brings to mind superficial scars, like the crescent shaped scar on my forearm, where our dog Tasha bit me when I tried to take a chicken bone from her. It usually takes a moment or two of deeper thinking before I remember how many scars I have.

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