A blog by Lori Lyons

Friday, May 23, 2014

Bent Wings -- A Scoliosis Journey: Postponed

I swear this is true.

I was sitting at the computer, trying to concentrate on ... something ... But my mind began to wander, as it frequently does, to her surgery.  June 24th. The date on all our calendars. I just happened to glance at the lower corner of my screen to check the date. May 19th. More than a month to go. How will I make it?

Then the phone rang.

It was the surgeon's office, his assistant, wanting to know if it was OK if we postpone the surgery to July 3rd.

And I felt the punch in the gut.

To him, it's probably like postponing his dentist appointment, his haircut, his pedicure. To me? It's another nine days to fret, to worry, to agonize, to imagine the worst, to rationalize, the justify to those who don't understand, to figure out our life, to hope for the best, to try not to think about it (yeah, right). And I do all those things, all the time.

"Is that OK," the young woman on the phone asked.

"Do we have a choice?" I replied.

She chuckled.

"I guess so," I said -- even though it means she probably won't be healed enough for the first day of school, which is August 11th. Even though every day I look at her, I see more and more of a dramatic lean. Even though she complained just the other day about her back hurting while she was sitting at her sister's graduation; then again while standing at her weekly singing lesson. Even though I am worried to death about all of it, and can burst into tears at the mere idea of that man cutting my daughter open.

 I wasn't sure how she would react. While I am a nervous-wreck over the whole thing, my Snarky Teenager seems completely unaffected by the whole thing. She's not scared, not nervous, not afraid.  She doesn't talk about it, doesn't ask questions. She did watch a few YouTube videos I've found that were posted by other kids. That's enough for her. When anyone asks her about it, she just replies, "It's going to make me better."

I've tried to get her to join the online support groups, become pro-active.  She wants no part. I was actually surprised to see that she had drawn kind of a funny picture of her spine on her art portfolio from school.

This is the cover of Lora's art portfolio from school.

"I don't need a support group, Mom," she says. "You do."

She's right. And I have one on Facebook.

Still, I sat her down. Held her hand. And told her that her surgery had been postponed.

"Good!" she said. "I was going to miss the start of Teen Wolf."

Well, there ya go.

Wednesday, May 14, 2014

Bent Wings -- A Scoliosis Journey

In January of 2012, just after she turned 11, Lora Leigh's pediatrician noticed that her posture was "off."  She did some routine tests and ordered an X-ray. A few weeks later, the doctor called to tell us that her suspicions had been confirmed. Lora Leigh had "pretty significant" scoliosis.

We were sent off to a pediatric orthopedist, Dr. Sean Waldron at Ochsner Hospital, who did more confirmation. Scoliosis. 31 degrees.

She's an artist. She added her own touch. 

A few weeks later, Lora was fitted for a hard plastic brace -- a Thoraco-LumboScral-Orthosis (TLSO) Brace, also known as a "Boston Brace."

She wore this contraption for roughly 12 hours a day, every day. After trying to wear it to school once or twice, she elected to wear it mostly at night while she slept. It was an adjustment, but she did pretty good.

Subsequent check-ups with Dr. Waldron showed a slight increase, but not enough to worry about, he said. At one point he even said, "I don't think she'll need surgery."

But that changed in 2014. She outgrew the brace. Before getting another one, we went back to Dr. Waldron. Another  X-ray showed a significant increase in her curve -- to about 43 degrees.

X-ray, August of 2013

Now we're talking surgery.

We met with the surgeon-to-be, Dr. Joseph Zavatsky, at the former Mercy Baptist/Ochsner in October of 2013. He agreed that surgery was necessary, but -- much to our relief -- said we could wait until the summer of 2014. It was a huge relief to us because, at the time, my husband and I were the caretakers of his elderly mother, who had moved in with us in October of 2012. She needed full-time care and went to dialysis three times a week. We would have to tag-team between her and Lora. And we could not imagine how. As it was, I had to go to that first appointment with the surgeon without Marty.

So, we waited. In the meantime, I -- ever being the inquisitor -- hit the Internet. I read everything I could find on Scoliosis, its causes, its treatments, exercises that were considered good, exercises that were considered bad. I talked to people who had the surgery and to those who did not. I searched and read until I confused even myself.

Why, I wondered, did doctors automatically say surgery  once the curvature reaches the 40s? What are the worst case scenarios? What are the best case scenarios? What quality of life will she have if she doesn't have surgery? If she does? How will she feel about having an ugly scar down the length of her back? I mean, let's face it. Someday she will want to take her clothes off for someone. Will she be self-conscious? Ashamed? Proud as hell?

I worried myself into a frenzy. With the mother-in-law, my unemployment, troubles within my family and Lora's impending surgery, I found myself a counselor -- and a Facebook support group with other moms. And I tried not to think about it.

Dr. Zavatsky did want an MRI done on Lora to check on the curve and make sure there was no "pathological cause." Yeah. We set it up for Dec. 26. On Dec. 24th, the hospital called to do our pre-registration and to tell us our co-pay would be $1,600. I had to cancel it.

In February of 2014, my mother-in-law Jane passed away at the age of 83.  A few days before the funeral, I took my daughter shopping for a suitable outfit. She decided she wanted to wear a black dress. We found a cute one at Cato, and she went into the dressing room -- without me, of course. At 13, she's too cool to have mom see her undressed anymore

When she came out to show me, I was stunned. I wanted to tell her to go right back in there and turn back into a little girl. She had heels on, as well, and looked so gorgeous and tall and regal.

Then she turned around to go back into the dressing room, and I was stunned again.

The hem of her dress was crooked. The waistline of the dress was crooked. One hip was obviously much higher than the other and one shoulder blade protrudes much more than the other. Here I am worrying about a scar? I felt so horrible.

With our sole focus now on our family and our daughter, I set up another appointment with Dr. Zavatsky in April -- sort of a lets-get-reacquainted meeting. With my husband, this time. And the Snarky Teenager, who seems completely non-plussed by the whole thing.

And I went armed with questions (thanks to my fellow Scoliosis moms). And he sort of answered them. He explained that there is no chiropractic, no physical therapy treatment to correct Lora's curvature. She can live without surgery, but likely will have all kinds of other complications -- breathing troubles, pain, possible paralysis, not to mention the physical deformity. He tried to explain the surgery as best he could and what it would mean for her.

Yeah, he was arrogant. Yes, he seemed perturbed that I asked the questions. But he didn't put me off. I even asked him, "Do you make pretty scars?" (And the med students with him were very nice.) Lora says he was "Confident."

We left with a new attitude. Let's Do This. And a date: June 24th. And she had her MRI last week (with a nice new payment plan set up).

Not everyone agrees this is the best thing for Lora. Are there other things we could try? Certainly. But the ones I know of are not covered by medical insurance and I don't have thousands of dollars hanging around. (Have I mentioned that I am unemployed?) Is there a possibility that things can go wrong? Certainly, as in anything. (Just read my post about Parker.) But I have read enough success stories and enough should-have-had surgery stories to believe that we have made the right decision.

And Lora agrees. She wants to have the surgery. She doesn't talk about it, but I'm sure she is self-conscious about her body. A few weeks ago we had weather warm enough to get in the pool for a while. She came outside wearing a two-piece suit -- and I was stunned again by her body. She is straight on one side, curved on the other. She can't stand with both feet flat on the ground; she has to bend one leg. There is a very large hump in her back.
Lora on a recent trip to the beach.

We are fortunate that she is in no pain.

We all came home that day and, of course, I hit the computer again. I found this video, which is an excellent animation of the surgery that will be performed on Lora Leigh. Marty and I both watched it and nodded. Now we have a picture in our brains.

I found another video a short time later, of a young girl, about the same age as Lora, with the same curve. She and her mother did a video blog of their journey. This one gave all of us great comfort.  It also inspired Lora and me to blog about our own journey. She is a budding photographer, I am a Storyteller. We will tell our story here. Our hope is to help other moms and dads and Scoliosis Warriors as they travel this path. It's terrifying. It's overwhelming. It's nothing fun. But together, we can get through it.

                                                   scoliosis... aww I love this <3 thanks to all the people who helped me through my surgery!! @Philip Allen @Grace Nenneman


Not a one of them was born to me. But all three of them are my kids. 

Wednesday, May 7, 2014

Game over

The final out had been called. The final post game speech had been given. The balls and bats had been stored away.

The opposing team had retrieved the gloves and hats they had thrown into the air in celebration, but were still hooting and hollering into the air.

But on the other side, the tears were still falling.

Inside the fence, the Destrehan Wildcats were taking their sweet time putting away their gear before they had to walk off the baseball field -- some for the last time. Some had a harder time than others, wishing for one more chance, one more at bat, one more inning, one more game.

Outside the fence, their parents and grandparents and aunts and uncles and cousins were waiting to hug, to kiss and to share their tears. Flashbacks to that first hectic t-ball game and the hundreds backyard pitch-and-catches overwhelmed some as they waited for their sons to come through the gate.

And off to the side, a small family hugged and consoled and shared tears with The Coach.

It was a tough loss, yes. But for him, this was it.  There will be no more next time. No more next year.

After 25 years of coaching high school baseball, my husband Marty Luquet, decided that this was to be his last season on the Destrehan baseball field. He had his reasons, some he has shared, some he has not. I know that he's not having as much fun as he was the day he started back in 1981 at a now-closed New Orleans high school. I know that he's not as happy as he was the day he got his first team after a 10-year hiatus to work in recreation. That day, he bounded into my house and shouted, "I got my first name back!"


And he can't move the way he used to.

So I guess it was time.

And what a 25 years it has been.

  • 447 wins, 251 losses
  • Two state runner-up finishes
  • Class 5A All-State Coach of the Year in 2002, 2003 and 2005
  • All-Metro New Orleans Coach of the Year in 2002 and 2010
  • All-River Parishes Coach of the Year in 2002, 2004 and 2010
  • 14 consecutive playoff appearances
  • A 33-1 finish in 2004, with a 30-game win streak and a No. 2 national ranking
And that's all fine and dandy.

But to him, his proudest moments have been off the field.  

The guy in the grocery store who shouts "Coach!" and leaves his basket unattended for 20 minutes after he runs across the store for a reunion.

The guys at the local minor league and college ballparks who come shake his hand.

The 30-plus former players who showed up at the first Saturday home game of the season to honor him and stand with him for the National Anthem one more time.

The hundreds of texts, Facebook messages, tweets and emails he has received since announcing his decision, and the flood since losing his final game on Saturday.

The many compliments from the opposing teams on the way his team plays and acts and conducts itself at all times.

And this ...

As our family hugged and cried and did our best to console one another in that final moment, as the parents waited outside the fence, a young man dressed in the opposing team's yellow waited at third base. And he waited.

He waited a long time. 

Finally, the Luquets broke free from one another and The Coach. Still fighting tears, he spotted the boy and made his way over.

"Coach," he said. "I didn't know this was your last game. My coach just told us you were an icon in baseball. I just wanted to shake your hand."

And he did. And made The Coach cry some more.

Oh, who are we kidding? There will be more baseball games, both as a spectator and as a coach. He's not done with the third base box just yet. He's already signed up to coach an American Legion team that will combine his now-former team with his former arch-rival Hahnville. There's talk of an All-American League team to coach too. And he can't wait. 

I guess that Honey-Do list will have to, though.

Click here to read an outstanding tribute to The Coach

Tuesday, May 6, 2014

The crooked little tree

The tree we planted on the day Lora's adoption became final (it's a Japanese Magnolia) grew just as crooked as she did. It leans over to the side. 
So, yesterday, The Coach and I performed a little "surgery" on it.
We hope that now it will grow tall and straight.
Lora's surgery to correct her scoliosis is on June 24th.
She and I have talked about it, and we will be blogging about the experience.
We hope to help other moms and kids out there who are going into this as terrified as I am.