First post-op visit

Corbin was a hit at the doctor's office this evening. So much that his sweet little story-telling even brought a smile to a very weary Dr. Reinisch.  Corbin was babbling on about having wires and bandages and other funny stuff. Dr. R pulled a nurse over and said, "we should put him on the video talking about the surgery." Corbin was so well behaved; he didn't care at all when the physician's assistant took his bandages off. In fact he asked her very pointedly- "Hey Doctor! Where is your laundry room here? Mine is close to my bedroom, but my bathroom is even closer." She looked at his distended belly and said, "Woah! He really needs to go to the bathroom." And that has been one of our big concerns too- he is very constipated. Poor thing tells us five times a day that he needs to pooh. Anyway, he was there standing up on the chair, cup over his ear with a velcro strap sutured to his head, a black and swollen eye, and a huge belly just smiling and chatting away. I REALLY can learn some lessons from my boy. He is so patient, so tolerant, such a trooper...
He chatted with the receptionist about vacuums. He mentioned a Oreck to her and she looked at us very puzzled. If only she knew him, this would be a huge relief. Hearing Corbin talk about his old,familiar subjects brought joy to my heart. It's a reminder that he really is going to be okay. The road to recovery is long and he will endure discomfort for a while. It will be swollen for the better part of a year, but he is going to be so happy to have two ears.  One of his first questions today when the hat came off was: "what happened to my hair?" So freaking cute. He wasn't really all that upset. Just wanted to know what happened. My mother pointed out that we are so vain as adults. She said that we would have been looking in the mirror feeling bad about ourselves for being bald or feeling ugly because our eyes were swollen and our head was bandaged up. It's the truest thing I've heard lately. Corbin hasn't asked once to see himself. He is innocent, sweet, and very precious! When we got back from the visit, we all hovered around the box of gourmet cupcakes and said, "he really deserves this." Again, we're such ruined adults. We view things so differently. He ate half a cupcake and said, "I'll save the rest for later. That was good." He didn't view it as a treat for enduring this traumatic surgery. He jus likes cupcakes and when he'd had enough, he stopped. I have been eating so much to cope with being sad for him. I realized today that he's not sad for himself at all. He is uncomfortable, and he has a lot of questions, but he's not sulking. I need to suck it up! Oh, one more thing- we were invited back to Dr. Reinisch's office to give a pep talk to a family that will endure the surgery sometime next week. The mother was so tearful and I told her I totally understood. Her son was middle school age, and she had so much apprehension, but I brought Corbin over and said, "it's truly a blessing to be able to give him this gift."  Her other two sons had been telling her to toughen up. It's almost impossible for a mama to do that. You feel like your heart is being ripped out when you see your child in pain. Everything checked out fine with Corbo today and he is on the road to recovery.

Watching a video of Splat the Cat after our doctor visit. 

Let the healing begin!!

On July 13th, 2011 Corbin underwent the stage 1 ear reconstruction with a medpor implant.  It was one of the longest days of my life. We woke our sweet boy up at 5:30 and dragged him to the car. He was in his usual cheerful spirit and remembered that it was his big day. He said several times that he was ready to get his new ear.  Corbin's bravery throughout the morning in the pre-op/ admissions prep room was impressive.   He was cooperative and very curious about the monitors. For the first time his blood pressure was taken and the sweet nurse told Corbin it was an arm-hugging machine. I felt anxiety rising when the anesthesiologist came over.  She reassured us that anesthesia was perfectly safe and that children did well with it. Sweet Corbin drank the sedative and we parted ways. After hugging and kissing our lovely boy, we embarked on an almost ten hour day in the waiting room of the outpatient surgical center. Every task was painstaking as my thoughts were on Corbin in that operating room all day long. Sudoku never felt challenging, hours never passed so slowly, and phone calls never excited me so much... The nurses would call us about every two hours with updates. When we got the call that all the skin grafts were done, I had a wave of panic.  I pictured my son's flesh being cut in my mind's eye and it was almost too much to bear. Sporadic tears and tight hugs from Matt peppered my afternoon. My mom, mother-in-law, and I walked to Melrose Avenue to grab some lunch. For a moment, I put negative thoughts out of my mind and imagined Corbin as a ten year old boy with two healthy ears and I could spend thirty minutes in hopeful peace.  The night before the surgery we ate dinner at P.F. Chang's as a family. Corbin's fortune cookie said, "Be thankful for the experience you will have tomorrow." Very fitting. Back to the surgery day. We were anxiously waiting. Alone. The staff had closed the reception desk and nurses were trickling out for the evening. Then the door opened and we saw Dr. Reinisch. He looked tired. As I'm sure we did too. He gave us the great news that the surgery went well and that he was able to make a tragus.  This was especially good news because patients with grade 3 microtia do not have the cartilage readily available/ in position. Dr. Reinisch is a wonderfully talented doctor and artist if you think of what he is doing from the perspective of designing body parts! He created a fabulous tragus and he feels confident that Corbin won't have to come back for a second procedure. Fingers crossed that his healing goes great and the swelling decreases in about six to nine months leaving a beautiful new ear.After speaking briefly with Dr. R we were allowed to sit with Corbin in recovery. Seeing Corbin in pain and confused was easily the hardest moment of parenting I have had. Tears were streaming down my face as he writhed around with a swollen face and unable to speak understandably.  He cried and whined from pain around his navel. I cuddled with him and sang to him as he drifted in and out of sleep. Eventually he calmed down. After his nurse had flushed out his i.v. and had given him tylenol, he scarfed down four graham crackers and two juice boxes.  The poor buddy was starving.  He seemed so delicate and broken, but I was immensely relieved to have him in my arms. As soon as we took him out to the lobby, I broke into tears again (probably because I caught eyes with my mother's empathetic look). Sweet Corbin mustered out the words, "Hi Nana. Look. I have wings. Did you know I can fly?" It sounded muffled and his words were thick, but I just kissed all over him as he spoke. SUCH A SWEET BOY! He requested goldfish in the car. He chowed down and for the rest of the evening he was pretty groggy. He had one crying fit from pain and he was really upset about the "boo boo" on his tummy (the site where fat was taken). At 1 a.m. we gave him his codeine and put him in the bed with us. Matt, Corbin, and I toughed it out through the night drifting in and out of light sleep. We rubbed his back, reassured him, and I prayed. A lot. He woke up and wanted to take a bath. His tummy was really hurting. And the incision on his skull had leaked a bit of fluid through the night. He looked pretty rough. He ate a little breakfast and immediately took a nap on the couch. When he woke, he watched a movie and colored a bit. He followed that activity with more napping. Then we noticed he was feverish. He sweated a lot through the second nap, and seemed really invigorated upon waking up. He ate, drank, played hide-and-seek with us, and wanted to go on a "walk" to the top floor of the condo building. We took the elevator up and stared at the hot tub. All the exertion left him pretty tired. On his own he asked for medicine. Poor thing was in pain again. I gave him tylenol and a bath. He is now sleeping with his cup,bandage, and skull cap covering his new ear. Tomorrow will be the unveiling and the first cleaning. We are so excited!!! Our son officially has two ears. It's truly a miracle!

Surgery Day- July 13

We are a little more than two months away from Corbin's big day. I have been preparing myself mentally over the past three years for what it will feel like to hop on the plane bound for Los Angeles knowing that my sweet boy will undergo a skull-based plastic surgery. I can say that I still am confronted with twinges of my own denial. Is the day really so close?! We will all breathe a big sigh of relief when he takes of his bandages to reveal a "big" ear just like the other one. Until then, I'm going to need prayers,prayers,and more prayers. I want to be a strong, nurturing mama with utmost trust in our surgeon. I want to be the rock for Corbin. My prayer is that Matt and I can remain calm. No tears. Just positive energy. When I look back on this journey (researching Microtia, visits to the Cranio Facial clinic at UNC, meeting Dr. Reinisch, researching the options, battling insurance, fund raising, and now finally arranging for our trip) I know that we have done the best we can as Corbin's parents to choose a treatment plan that will give him a better childhood and ultimately, a more fulfilling life. When my own selfish desire to keep him out of an operating room rears its head, I remind myself just how difficult adolescence is. It would break my heart for  him to be teased about his missing ear. We have the support and generosity of so many people, and we're going to take full advantage of it. May 5th is the last fund raising event (in California) and I'm just eternally grateful to every single person who has prayed, donated, sent letters, and now for those musicians who will jam in the name of Corbo! :)

Sweet Corbin enjoyed a visit to the beach. We're trying to squeeze as many in as we can before his summer is consumed with surgery. I love this little guy so much. As Matt always says, "I'd fight nations for this kid." It's so true. We're just eternally grateful for all of the kindness and generosity to his ear fund. And guess what? We have reached our goal! There is one more fundraiser event on May 5th. It's a Cinco de Mayo concert in Davis, California. My mom has several colleagues from the hospital who are talented musicians. I can't wait to hear about it and hopefully the proceeds can benefit http://www.smallwondersfoundation.org/

Corbin's surgeon, Dr. Reinisch, and his wife have started this awesome organization. Since its inception so many boys and girls have received beautiful ears :)

We can't wait to show you all Corbin's big,new ear! Stay tuned...

I'm taking more pictures of the Microtia ear to share with Corbin when he's older and this surgery is history. I want him to know how many people were involved in making his new, big, beautiful ear a reality. I am just eternally grateful for all of the support we've received. Isn't this a cute little guy with a cute  "special" ear?  This picture was taken right after his bath. It's easier to see the little ear when his hair is wet. All that shaggy sweet blond hair hides his peanut ear most of the time.

Talk about heartbreaker...

So, after a deflating phone call from Dr. Reinisch's office, I read the "approval" for coverage only to see the fine print in disclosure. They are agreeing to 10% coverage because they believe there are competent plastic surgeons in network who could perform the surgery. Bullocks. So, we have these donations. Thank God! And we'll just bite our thumbs at Tricare and pay for Corbin's surgery with the love of contributors.
I'm a little too optimistic at times; really thought we had won the battle for coverage. Alas, I was naive.
We'll certainly keep everybody posted.

Inspiration!

We consider ourselves to be at our goal! We're at $18, 437.01 as of 7pm March 1st.

A huge thank you to everybody who contributed. We're not staring down a big number now, and a tremendous burden has been lifted. I also have hope and am inclined to believe that this third appeal will be successful. When I spoke to a representative today, Corbin's referral had been at the med board for processing and it had been flagged in the system as "approved" for some coverage. We aren't sure exactly what percentage, but know this: if there are any funds left in this ear account, we are giving it to other pediatric patients who are specifically undergoing Microtia or Hemifacial Microsomia reconstructive surgeries. I have NEVER been as impressed with people in my life as I have in seeing how quickly complete strangers will give to a child in need. Paying it forward will be no problem in our book. In fact, I'm hoping we are able to give a significant gift to one of the following foundations: http://www.letthemhear.org/     or   http://www.littlebabyface.org/

Hallelujah!!!!!! Now just say some prayers for strength in my heart/mind as Corbin faces a major surgery this July. Updates to follow....

Just a little gratitude

We have mailed out over 100 thank you cards. My hand aches a bit :) It's a great problem to have.
I insisted that the least I could do was to hand write messages to all our contributors.
In Corbin news, he passed his hearing test on the "good" ear about two weeks ago at the audiology visit to UNC. For the first time ever, the audiologist was able to test the microtic side using a little device connected to a head band that rested on his skull. Corbin did amazingly well for such a complicated hearing test. The audiologist put static in his good ear and isolated the side affected by Microtia. It was fascinating to see that there were certain sounds that Corbin could actually hear (albeit on a loud scale). He was instructed to push a big red button when he heard the bird chirping. I was sitting on the other side of the sound booth watching, and let's just say I was weepy. We know from previous cat scans that he doesn't have fully grown ear bones nor does he have an ear canal, and he never will. But to know that with a bone-anchored hearing aid in his future and his new cosmetic ear he will actually hear a range of sounds makes me so happy. When we fly out to L.A. for the big day in July I will make every effort to update this blog so that all of Corbin's supporters can follow along. Thanks to everybody who has contributed, prayed, or just simply visited this site!!!! It means the world to us.

This is my special "peanut" ear. I was born with Microtia-Anotia on the left side and mild Hemifacial Microsomia (asymmetry). Microtia occurs in about 1 of every 8,000 births. Because of its rarity, there are few doctors who are familiar with the congenital ear deformity.  Even my own pediatrician has never had a Microtia patient in all of his practicing years. I truly am one-of-a-kind! My family is working very hard to make a reconstructive surgery possible this summer. My date is July 13th, 2011. The surgeon we have chosen is world-renowned Dr. Reinisch, the pioneer of MEDPOR reconstruction for the outer ear.  It offers a synthetic framework (like an implant) but is covered with the body's own tissue and is fed by my blood supply. It will be hard for the average eye to notice that it isn't a "real" ear when it's all finished and healed. I'm excited, but my family needs help financially making the dream come true. Our insurance company has already sent us one denial and we're now in the appeal process, but historically plastic surgeries outside of the network have not been approved. Any donations you are willing to make toward my ear savings fund will be GREATLY appreciated. 

Please know that you will be giving me a gift, and it won't be tax deductible.  I deserve the right to two ears and my parents love me enough to humbly ask for support from family,friends, and strangers. Thanks for stopping by and have a wonderful day!

To make a contribution to Corbin's fund, make checks payable to:  

Matt and Heather Weeks

                       6 Minikahada Trail  Pinehurst, NC 28374

Or you can click on the donate button on either side of the page.