Tag: Facial Paralysis

Why You Should Smile

Why You Should Smile

There are people who love to star-gaze; I love to smile-gaze.  I miss my smile, it’s difficult to look back on pictures and see how vibrant my smile was, and how beautiful my teeth were when I smiled. Yesterday I was looking for the picture…

The Truth About Scars

The Truth About Scars

What the hell is beauty anyway? It seems the world in general is quick to measure something none of us can really define.  I mean let’s be real here, I adore the classic look of Jackie Kennedy, while some of my best friends think she…

Memory Of Cleveland Clinic

Memory Of Cleveland Clinic

Every 3rd of July I am reminded of fighting for my life in The Cleveland Clinic. Four years ago today I was in surgery, literally hoping for a miracle. Little did I know the miracle was sitting right here in Arizona, with Doctor Lettieri.

On July 3rd 2014 I was rolled into surgery, Eric gave me a kiss on the forehead as they wheeled me into the operating room. Tears rolled down my cheeks onto the pillow, nurses kindly asked what they could do to help; shaking my head, watching them walk away I knew there was nothing anyone could do. Not even with the best surgeons on the face of the earth, no one could be able to bring my smile back.

The worst was still ahead of me, waking up in the recovery room after an eleven hour surgery I felt my head. It was full of staples, like a train track from one side to the other and down the back of my skull. My ear was pounding and swollen. I just wanted to see Eric and go home; after seven weeks in Cleveland I was depressed, sad and disoriented.

The next day, the fourth of July 2014 is a day I will never forget. No attending’s were in the ICU, the residents were in charge for the Holiday. Pain beyond my belief was surging through my body; a senior resident forgot to put orders in for pain medicine; I thought I would die on that day. I was prepared with letters to my children and dear husband. When the resident did not answer page after page to come to the ICU-I went further and further into a deep dark place, actually wanting my life to end because the pain was so bad. Nurses rubbed my legs and listened to me sing “Be Still My Soul” and “I am a Child of God” over and over again. It was an hour and fifteen minutes the senior resident finally make it to my room, followed behind him were other junior residents. He questioned my pain like I was faking; wondered why I was crying, and asked me too many questions; which I believe now was a senior resident showing off for the junior residents. I was gasping for air I couldn’t speak without trembling, he finally gave me the pain medicine. Even after the pain medicine was in my system my body shook like a baby, composing myself was difficult.

This is one of the junior residents Brendan Alleyne-he came to visit me after that incident and held my hand. The compassion he showed was nothing I will ever forget, I wish I could tell him what his acts of kindness did for my faith in the future of medicine. I’m thinking about him today, Dr. Lettieri is constantly telling me about the ego’s of residents, just like the senior resident I encountered at Cleveland Clinic. They forget who they are serving, I often wonder if he would have treated me different if I had been his mother, wife or child. Thank you Dr. Alleyne wherever you are today, I believe you are caring and sharing for your own patients now and hopefully learned something from this experience that will help you always remember patients are real people, with real families and a story to tell.

XOXO Monya

His Grace

His Grace

  I remember taking this picture in 2015, just a year after being diagnosed with facial paralysis. Frenchie took me on a trip between surgeries; funny I can’t remember where we were. We’ve been on so many trips together trying hard to mark everything off…

Grands

Grands

There is simply nothing better than being a grandparent; and one who is needed. Kaitlyn and Brian flew to Utah a couple of weeks ago to say their final words of love to a beloved husband, father and grandfather; we will truly miss Shane Wright’s…

Dr. Lettieri Post Op

Dr. Lettieri Post Op

This is the REAL Dr. Lettieri–my Flip Phone Doctor is back-with his Converse, humor and beautiful blue eyes. After assessing my bruising and clotting, we have decided to wait a couple of weeks to see how it looks-we are not afraid of the blood clots traveling. My face feels like it did when I had Capsular Contracture in my breasts–extremely hard to the touch–but the bruising is almost gone. Dr. Lettieri said because of how much work he needed to do my face will take longer to heal. I will be undergoing a few more surgeries this year. My sinus reconstruction will be toward the end of the year, and Dr. Lettieri referred me to someone he said he would “allow to operate on his family’ If knew Dr. Lettieri like I do that is quite a compliment. He picked up  his handy dandy flip phone and contacted Dr. Howard’s office to send me asap. It’s nice to have a surgeon who is humble enough to understand there maybe another doctor (who was trained by Lettieri) he trusts and admires. I told him how nervous I was to see a different surgeon, he explained to me on the next surgery Dr. Lettieri will be in attendance, but not for the nasal reconstruction, to perform the rest of the facial reconstruction. (and possibly to check in on me) So three surgeries in one if if works out.–Can’t wait for that recovery;  if it wasn’t for my perfectionist surgeon he would have kicked my out and given up on my by now.

Dr. Lettieri is Italian and loves Canolis–so this is what I brought him today. The plate says “Be Happy Always”

As I waited for Dr. Lettieri, I realized they brought me into a surgical procedure room. This is the bright light he uses to see EVERYTHING–it’s pretty bright.

One time on my way to MIHS to visit with Dr. Lettieri, I watched 2 teens having full on sex under this tree. I honked; many times yelling at them to stop. I seriously would have given anything to have a hose and spray them down likes dogs in heat. I told Dr.Lettieri since it was happening just outside his window but off campus; his answer “Nothing surprises me here, I’ve seen it all” I shouldn’t have been surprised either; it did shock me. Today as I was leaving the Clinic I watched a van open and police officers escort a prisoner in an orange jump suit and shackled by his feet, secured with handcuffs on his arms.

I didn’t judge him, he was typical looking nothing to scare or offend me, in fact it made me want to show compassion for him, especially not knowing is story or the journey he has been on.

Yes I am definitely in a surgical room–what are they going to do to me today?

Bored……? Yes, soon Dr. Lettieri entered the room, stuck his large hands into my mouth to feel for the blood clot, and I’m pretty sure created another bruise. However, we are getting close to perfection he was very happy with the surgery outcome; still he has some follow up-but we need the swelling and bruising to go down, he thinks he can work on it at the same time Dr. Howard performs my nasal reconstruction; not crossing my fingers on that one. Dr. Lettieri hugged me and said “I will see you soon, we have been through a lot together but remember I’d let Dr. Howard work on me, you need to listen to me she’s good” I now have an appointment with her in the end of June–but l’m not having another surgery until I decide.

Monya Bonbon

 

Continue reading Dr. Lettieri Post Op

My Tribe

My Tribe

Ellis is our youngest grandchild almost 7 months old. Haleigh brought me soup and Ellis–he took one look at me and started to cry-remember he is only 7 months old I think he is teething, usually he is joyous and happy with everyone. I couldn’t hold him but seeing his face was enough.
These brothers are Kaitlyn and Brian’s boys, Phoenix and Archer. I didn’t really want them to see me all bandaged up, or worse with the bandage off.  One day I was in the hospital and our little Phoenix who is 3 years old decided to Face Time me I only answered because I thought it was my daughter calling. This was our dialogue ” Phoenix: “Hey Bonbon where are you? Me: “Where is your mom and dad? Phoenix: “Sleeping…Bonbon what is that blood?” (it was my drain) Me: “Uhh, yeah it’s a little blood, Bonbon has a boo boo” Phoenix: “Oh did you get a owie?”  Me: “Yeah just a little one, but the doctor is taking care of it so I can play with you again do you want to play?” Phoenix: “Oh Bonbon thank you, yes we can play…..today can I come to your house?” Me: “I’m not home, I’m staying at the hospital” Phoenix: “Is Papa with you.? Did you get a shot?” Me: “I did get a shot, but I am good now and yes Papa is here. What are you doing today?” We talked for over 30 minutes before it was time to hang up, I dreaded hitting END on my phone.  Yesterday he came to see me, not startled by the bruises or stitches that make their way like a train track from one side of my face to the other. He sat next to me on the bed, told me about leaving on an airplane today, going to see all his cousins and for his grandads birthday.  His animation and excitement are really contagious, he reminds me of Kaitlyn when she was a little girl curious, silly faces and totally in awe of his dad (his hero) as it should be. Archer was not phased at all with how my face looked. When it was time to leave I asked Phoenix to send me a Face Time while he is in Utah if he thinks about it his response “umm…We will have to see” from the mouth of babes
Our only grand daughter Weslie comes from my only son Blake and his darling wife Chloe. Blake brought me an acai bowl, it was a nice break from eating everything from a straw. Weslie is not feeling well so really stayed close to daddy. She did give me a huge roll of the eyes for a good laugh and waved “bye-bye bonbon, I love you” and off they went.
This is Ezra, he is Kayla and Jeremy’s middle son. I was Face Timed with Ezra and Theo.  Ezra was playing with Phoenix at his house and really just wanted to know if I would buy him ‘buzz lightyear’ and ‘woody’ apparently Kayla said everytime he leaves playwing at Phoenix’s house he asks her for them….and her standard answer is “No not today, you need to earn it” then he says “Well Bon bon will get them for me” So basically he was calling to know if I’d get him Woody and Buzz next time I’m in Toys are Us.
Recker is our oldest grandson also from Kayla and Jeremy. The only one I haven’t had immediate contact with is Recker….I have a feeling he would be picking out all the stitches on my face one by one, like he did when I had the nerve removed from my calf to my face.  I couldn’t feel it, but he was protecting me ….. he hates stitches and has picked them off of himself so in his mind if he doesn’t like them then of course Bonbon won’t either.
Theodore is Kayla and Jeremy’s youngest son. Theo did a Face Time with Bonbon and didn’t seem weary or worried about my facial appearance. He just kept saying “I wuv you Bonbon” and smiling the entire time.

It’s been one week today since my surgery with Dr. Lettieri. He has text me several times–people may think that is weird getting text messages from your surgeon, and maybe it is a little. I don’t believe he has the time or capacity to do this with every patient he see’s but I’m blessed he checks in on me on a regular basis. Not only to tell me he needs to do more work on my face (really?) but he is also checking in on my spirits–I adore him. I even tell him “I love you” he’s been with me through half of the surgeries I’ve endured always hopeful always happy to see me. I’m not sure what it is like to have a genius mind working overtime 24/7 but boy am I glad he does–although I think he needs some rest, relaxation and a break. Funny thing is I don’t think that is physically possible for someone who does what he does.

Now that I am home, resting has been really hard for me. I got bored with television and could not concentrate …. or the shows were absolutely lame. I miss my grandchildren, they each bring a different type of joy to my soul.

Seriously? I’m a 55 year old grandmother with 7 beautiful grandchildren each bringing a different level of joy, laughter and respect from me….I don’t want them to grow up, I would like time to stand still, well maybe not this week–it needs to go fast but the faster I heal the sooner I get to play. I promised to teach them how to make my famous sugar cookies. I need to be healed and out of this bed looking normal–well really what is normal? Normal is boring too? I’ve learned so much about having facial paralysis through the eyes of my grandchildren–they never knew me looking any other way so they don’t stare, they don’t judge they just love their Bonbon. People can learn from children, I have unconditional love.

XOXO Monya Bonbon

Surgery 41

Surgery 41

Eric and I drove early Thursday morning to Maricopa Hospital.  My anxiety level was pretty high until Dr. Lettieri showed up. He’s always so reassuring, comforting and confident.  Dr. Lettieri is a genius in his field, he travels around the world teaching new cutting edge…