My Smile – 23 Years in the Making – Part 2

IMG_2672

In case you missed it, my first blog post covered the initial planning stages of my dental implant process. Now friends, this was where the real fun began. My treatment plan included one upper jaw bone graft to build up bone density in my jaw, six upper implants that would eventually connect to a permanent upper bridge, and four lower implants to connect to a permanent lower bridge.

Overall, the procedures were surprisingly less unpleasant than I had convinced myself they would be. First up was my upper bone graft which was strategically scheduled to occur during my winter break. I learned pretty quickly that you don’t just decide to get a bone graft, show up for your surgery and call it a day.

Before surgery day there are decisions to be made and many things to consider. Luckily I had an amazing oral surgeon who helped explain everything to me. I wasn’t expecting to be asked to choose the type of material used for my graft. I’m far from a doctor so I won’t go into detail regarding the options laid out for me.

In the end I decided to go with a bone graft material that is not typically used in upper jaw bone grafts. If my memory serves me correctly, it was a material used in many other bone graft procedures but had not yet been established as a go-to material for the type of graft I was to receive. I made my choice in material. All that was left were some bone scans and x-rays to help the doctor see where I needed my bone built up.

On the day of the procedure I was freaked out. When they called me back to the pre-op room, I genuinely considered busting through the window and making a daring escape, never to be seen again. Instead, I did everything the doctors asked me to do and was quite polite.

In the O.R. being strapped into the chair, I was really freaked out. I guess I was scared of something going wrong but most of all I think I was scared of the unknown because once this surgery was done, there would be no backing out of the implants. I’d be in it to win it. The good news was that I didn’t have much time to freak out because I was administered anesthesia and fell asleep, but not before giggling uncontrollably.

I emerged from surgery jovial and puffy. I was still alive. One procedure down and two to go. The healing process after the bone graft surgery was pretty easy. I quickly learned that the prescribed pain medication did not agree with my stomach, so I decided to forgo pain medication. Fortunately I experienced almost zero pain post surgery.

This is not to say I wasn’t uncomfortable, but what I experienced was more along the lines of soreness and general discomfort. The two weeks following my bone graft surgery I lived off of Netflix and mac & cheese. I am weird and believe firmly that soup is NOT a meal so I insisted on eating somewhat solid foods.

Eating wasn’t an issue. I just had to be aware of my stitches and lay off of anything crunchy. The one negative side of my recovery was that I experienced facial swelling. For about two weeks following my surgery I looked like I had met the business end of a shovel. The swelling wasn’t fun but as I mentioned before, it was not painful; just slightly uncomfortable.

With one surgery in the can, I returned to my normal routine. At this point I was eager to keep the process moving so I could finish as soon as possible. The only catch was I needed to wait at least 6 months between surgeries to make sure my graft built up enough bone.

So with that in mind, I took a six month breather and focused on being a college student, albeit with appointments every few weeks to check on how my healing was progressing. Once I got the green light from my oral surgeon, the next procedure would be the first of two implant surgeries.

TO BE CONTINUED…

Volunteers are Love in Motion!

Alanna Bree TX NFC Hat

Dr. Bree at the 2013 Family Conference in Texas

By Alanna F. Bree, M.D.

Pediatric Dermatologist, A Children’s House for Pediatric Dermatology

It has been an honor and a privilege to volunteer as a member and a secretary of the Scientific Advisory Council for the NFED.  The organization is a true blessing to so many.

They not only do an excellent job of supporting and advocating for families affected by ectodermal dysplasia, but they are also an invaluable resource for building awareness and educating medical and dental professionals in the USA and around the world.

NFED Scientific Advisory Council

NFED Scientific Advisory Council

It is also because of their tireless efforts and vision that the research and potential treatments for the ectodermal dysplasias have moved forward so significantly.  I can’t imagine a better organization to work with professionally or personally.

Take time to think
Take time to pray
Take time to laugh
It is the source of power
It is the greatest power on Earth
It is the music to our soul
Take time to play
Take time to love and be loved
Take time to give
It is the secret of perpetual youth
It is God’s given privilege
It is too short a day to be selfish
Take time to read
Take time to be friendly
Take time to work
It is the fountain of wisdom
It is the road to happiness
It is the price of success
Take time to do charity
It is the key to heaven

Mother Teresa knew that giving of yourself is one of the greatest gifts you can give.  Fortunately the NFED has many dedicated volunteers who also know this, and I am lucky to count myself as one of them.

Dr. Bree with Dr. Robert Goltz, who was the first to identify focal dermal hypoplasia syndrome.

My favorite part of the organization is the people who have come into my life through my involvement.  This includes the staff of the NFED who are some of the most kind-hearted, genuinely caring people I know.  It also includes the colleagues who I feel fortunate enough to work with through collaboration and sharing of knowledge.

Dr. Bree with Zach Hamm

Dr. Bree with Zach Hamm

Most of all, it includes the individuals and families affected by ectodermal dysplasias.  I see the unique beauty, the resilience, and the strength in each person I have met.  While ectodermal dysplasia may affect some of us more than others, it does not define any of us. But it is luckily what brings us together through the work and efforts of the NFED.

Thanks to you, NFED, for doing what you do so well!

Finding Strength in Moments of Pain

By Acacia Hathaway

When my daughter, Ella, is older I will tell her the heart touching story of her first birthday and why I chose butterflies as her theme. She will begin to understand that she was strong from the beginning. She has taught me what strength really is.

When Ella was almost a year old, she had another appointment with the urologist. She was diagnosed with kidney reflux and needed testing. When we went in for her appointment she was happy.

But behind her eyes I saw her restlessness that others did not. I saw her covering up her nervousness. She had been around doctors and nurses for so long it was almost instinct to feel worried whenever she saw them.

First, let me warn you of what some may feel is graphic in this coming paragraph.

At this appointment her procedure required inserting a catheter. Ella had had catheters before but she was older and knew a lot more than she had before. We went to a room painted in fun colors that displayed mobiles from the ceiling. One of these figures was a butterfly.

Ella pointed to it so her grandmother pulled on the string attached to the butterfly. The wings began to move up and down, mimicking the motion of a real butterfly. Ella laughed, but her laugh was short lived when the nurses began inserting the catheter.

She screamed and cried. I wanted to comfort her but I could not hold her. She was going to have to go through this pain on her own.

Somewhere inside, strength and courage emerged above pain. In the midst of her screams, she raised her hand and pointed to the butterfly hanging above. Her plea was heard. Grandmother pulled down on the string and Ella began to smile as she cried. She knew it would be over soon. She showed strength at not even a year old.

This why I chose her theme to be butterflies. God never gives us anything we can’t handle and Ella is an example of that. This precious child has shown more strength than I’ve ever had.

I believe that in her future trials she will overcome pain with happiness, something we all should learn.

Acacia Hathaway is a guest blogger for the National Foundation for Ectodermal Dysplasias. Read her story, “My Name is Ella. I am Unique.”

Be a Genie for the NFED

All of us at some time or another have wished for a genie.  Rub the magic lamp and get three wishes.  How easy would that be!  Sadly enough, this doesn’t happen.  Why is that? Could it be because we no longer believe in magic?  What if we could borrow the magic lamp for even just a little while?

Genie in A BottleThe fact is YOU have a genie waiting to come out of YOUR magic lamp to grant wishes and do great things for your ectodermal dysplasias community and the NFED.  You can make a significant contribution.

We need your knowledge, dedication, passion, compassion, ideas, and your desire to make a difference in the lives of those affected by ectodermal dysplasias.

We are asking you to take action now:

  • Sign up to volunteer.
  • Hold fundraisers – small, medium, large to extra-large.
  • Tell your story about living with ectodermal dysplasias. Boast about your accomplishments or share your hardships as well as your children’s.
  • Create awareness in your community by hosting events and through local media.
  • Help with our advocacy efforts at the local, state and national levels.

You are the life-line of the NFED and the entire ectodermal dysplasias community.

Volunteers VIIHow can WE get to where WE want to be? It’s not only the NFED staff members’, your Board of Directors’, your Scientific Advisory, Patient Care, and Family Support Councils and your Liaisons’ responsibility but all of YOU and US and THEM together as a Team  who can safeguard the future of the NFED’s mission.  You have the fortitude to meet our challenges and accomplish our goals.

We all have a genie deep down inside, but most of us don’t realize that we can unleash its magic power.

UNLEASH YOUR POWER NOW AND BE OUR GENIE!

Contact Lea Richardson at 618-566-6871 lea@nfed.org  or Seth Ferris at sferris@nfed.org  to discuss volunteer and/or fundraising opportunities.

Come Out and Welcome In

Late one evening while browsing my email, I discovered that someone had sent me a message using the “Contact Me” form on my blog, EEC Chick.

So happy to find your blog and that you have dedicated time to help others with EEC. My wife and I just found last week she is carrying a child with likely EEC…Your blog has given us a sense of humanity, inspiration and hope. Finding your words, thoughts and accomplishments have helped us make the next step towards acceptance and positivity.

My heart swelled as I read the email. To think that all these words I’ve written had actually reached people who needed to read them. What a rewarding feeling!

Creating a blog about EEC was something I had wanted to do for years. I was hesitant though, because I didn’t necessarily want the whole world knowing that I wasn’t “normal.” Of course I knew people could look at me and see that there were things about me that were different, but the truth was mostly shrouded in secret.

In 2011, when I decided to get involved with the National Foundation for Ectodermal Dysplasias (NFED), I had been going through a period of figuring out how I could do something to give back to the world. I felt that perhaps getting involved with an organization that supported families and individuals who had similar challenges as I would be a good place to start. It was in going to that first conference that I began to feel cracks in the façade I had built up to protect myself all of my life.

Heather and Zemery Dennis

As a liaison, Heather befriended Zemery Dennis at an NFED Family Conference. Both are affected by EEC syndrome.

I became a liaison and began the first steps of “coming out” about my syndrome. Part of being a liaison meant that I would be listed on the NFED page, with a photo and a short bio. A part of me worried that people I worked with or wanted to impress would come across this and think less of me because I was a person with a condition – imperfect. But I also felt a sense of pride in stepping forward and letting my syndrome be named.

It wasn’t until a few years later that I finally decided to write a goals statement and plan out a blog. I wanted to share my stories to show that living with EEC isn’t a terrible thing. I wanted to pave the way for others, to let them see that they or their children could have a pretty normal life, despite having EEC. I also felt that blogging about myself and my experiences would be a therapeutic way for me to get over some of the things that happened in my life, and to realize my strengths.

For the first several posts I focused on things that had happened to me a very long time ago. It was easier to share things that had happened when I was very young, because it was almost like I was writing about someone else. Yet there was a very personal element to it all. It was like travelling back in time to my childhood and the thoughts and fears I had as a little girl.

I shared the blog with my friends from the NFED, and with my family and a few close friends, but I didn’t make an effort to spread the word outside of that group. After a while, my blog began to show up in Google searches. Through the WordPress stats page I could see how many visitors came in through searches, and in some cases I could even see what words they used in their search. The more I wrote, the more visitors trickled in.

When I received the email mentioned above, I had been blogging as EEC Chick for about a year and a half. I was getting to a point where I was thinking that maybe I had written enough about EEC and that perhaps I should move on to another topic.

Receiving that email from this young family (Dennis and Lindsay Claire) reminded me that while I may feel like I’ve written all I can about EEC, I will never know when someone out there will need to read about it.

I responded to Dennis and thanked him for his kind words. I recommended that he get in touch with the NFED, and conveniently, there was a regional conference coming up in a few weeks where we could actually meet in person.

Three weeks and a few emails later, I was face-to-face with Dennis, Lindsay and little Denny, who had made the trek all the way from Maine to White Plains, New York for the conference. Throughout the day, I saw many different people approach Dennis to ask his story and then become amazed at how his family had found their way to the NFED.

Writing and sharing my story has led at least one family to the NFED, and in so doing, has given them hope and a positive outlook for the future of their affected child. Writing has also helped me to become more comfortable talking about my syndrome with anyone. I find myself telling coworkers about my artificial teeth or about my ear troubles – things that my former self would have curled up and died before mentioning publicly. It has given me confidence and a sense of pride in who I am and in what I have been through.

Writing on my blog and on the NFED blog is one way of paying it forward. Being involved with the NFED and volunteering in various ways is another. I know that there is an abundance of love and support in our NFED community and being able to share that joy with others is an incredibly rewarding feeling. I hope that as you read this, you are inspired to share your story and your journey. You never know who might be helped by your efforts.

(Editor’s Note: Share your story with NFED. Or, sign up to volunteer. Heather McKelvie is a guest blogger for the National Foundation for Ectodermal Dysplasias.)