EL SEGUNDO, Calif. -- Gracie Claire Sauer participated in her first graduation ceremony Sept. 12, not from a Boulder City kindergarten or preschool, but from the Napa Center, where she received a three-week barrage of therapies intended to help her cope with neuromuscular disabilities.
The accomplishment was no easy chore, though, for the 21/2-year-old girl who suffers from an undiagnosed illness that has stumped doctors for the past 20 months and has affected her neurological and motor skills.
Gracie's Napa Center professional team put her through an agonizing and exhaustive pace of four hours of intensive therapy and 90 minutes of auditory stimulation every Monday through Friday for three weeks, as well as twice-a-week biofeedback sessions.
It was no wonder that with but a few days left in her grueling, 15-day therapy program, the little girl who usually wears a happy smile would pout and cry, seemingly wanting, but unable, to ask when all of this would come to an end.
Even with the long, sad faces, a slight grin would emerge now and then as a therapist worked away on her fragile and sometimes rigid body, making it do things Gracie had never done before -- things her doctors and therapists believe she is capable of doing routinely with a little daily training.
"She's made a lot of progress, but she can make more progress if she wasn't so petite," said her physical therapist Rafael Munoz. "This week, you're going to look at her and she's tired, she's going to fuss and she's going to complain. She's not in any pain at all. She's probably saying, 'What's this guy doing to me?' 'Why am I here?' 'What do my parents want me to do?' 'I don't know why I have to do this.' So it's all resonating."
Accustomed to a moderate therapy regimen back in Boulder City, Gracie had little time during her six-hour daily sessions at Napa to recuperate from the strenuous routine Munoz and his aide, Kelly McGee, put her through that left her tired and sore at the end of each session.
From 8 to 9 a.m. each day, Gracie started with inhibition techniques -- forcing newly used muscles to work while restraining muscles she normally uses -- and soft-tissue techniques employed to loosen her up.
For another hour, until 10 a.m., Gracie would go through a pattern of therapy that would stretch, reach, twist, pull and push her tiny muscles, followed by a 15-minute break.
At 10:15, she'd be back in the therapy room, this time donning a special suit -- a NeuroSuit developed by the Russian space program and adapted for therapeutic use by Napa Center co-owner Trisha Gonzalez -- that had numerous ties and adjustments used to isolate the work needed to be done by a muscle or group of muscles.
Then at 11, Gracie would go to the "spider cage," so called for the four or eight bungee-like cords that attached to the NeuroSuit and held her in an upright position, giving her legs support like she never had before.
Then, at 11:30, it was standing in a special walker designed without a seat, which required Gracie to stand tall and move forward using her legs while McGee sat nearby.
A lunch break came at noon, then at 12:30 it was time to report to Geni King, 51, an auditory trainer, who used the Tomatis Method of listening improvement that played Mozart, Gregorian chant music and children's stories to Gracie to improve the use of the vestibule of her ears, which control various bodily functions.
King calls the vestibule, or the central part of the ear, "the battery to the brain" because it affects much of a person's everyday activities.
The Tomatis Method was named after Dr. Alfred Tomatis, a French-born ear, nose and throat specialist who studied occupational noise problems after World War II and made the discovery that poor learning is associated with poor listening.
As if putting on a set of oversized earphones weren't enough, Gracie also laid on a special electronic mat Tuesdays and Thursdays so Michael Galvan, a 31-year-old biofeedback technician, could register stress points in her body.
While the daily routine was fast-paced and strenuous, the intensity of it all seemed to pay off, Gracie's therapists said.
"The biggest change, I would say, is her trunk control in any position," said Munoz, 26, a University of Southern California graduate with a clinical doctorate degree in physical therapy. "Her mom reported the second or third day that she could sit at the dinner table without her chest harness on, which was a big deal for her because she couldn't do that before, and now she can sit through a whole meal without a chest harness on without being afraid of her falling over and hitting her head. That's a huge, huge difference we've seen.
"Another change is her initiating movements. When she came in, she's never been pushed so hard to do a lot of these tasks, so initiating certain movements with a lot of different activities, developmental activities, that's greatly improved. (What's) also (improved is) her ability to reach with her hands across her body. She would not reach across her body at all when she came, and she does that now with her right hand.
"She's demonstrating protective reactions also with her arms; as she falls toward the mat, she'll fuss and throw herself back. Now she'll throw herself to one side and have an arm to catch her. She's not catching herself yet, but at least it's out there. She's starting that step. There's a lot of subtleties, like the way her hands open, the way her feet are placed," Munoz said.
Gracie's mom, Jennifer Sauer, said she, too, noticed similar improvements in her daughter, giving credit to the use of the NeuroSuit while noting the difference in the therapy routine Gracie gets at home from physical therapist Jason Derryberry.
"I think it's just the intensity," she said. "The big thing here is the suit, and just having the suit on her automatically makes her sit up bigger. I can't really explain what the suit does, but when you put it on her body, suddenly her tone kicks in, she's sitting up bigger, that's the main difference. Jason is great, but I think as most therapists do, they get into a routine and tend to do the same things. Not just with Gracie, but all kids. Here, because what they're doing is geared to Gracie specifically, it just catapults the results forward. You saw her supporting her body weight on her hands and knees; that's huge because she wasn't able to do that before."
When it came to staying the full three weeks in California, Gracie's dad, Scott Sauer, wasn't as fortunate as his wife in that he had home inspection appointments to meet in Southern Nevada. That resulted in him having to commute by air when he could.
As a parent, Scott spoke about what it's like to sit there and watch Gracie go through the rigorous therapy, given the fact that a noted geneticist at the University of California, Los Angeles last year told the Sauers he believed it was unlikely Gracie would live to see the age of 4.
"You know what, when you're at UCLA and they tell you to take your child home and you have no hope, this is a happy time. It's a positive step," he said. "Obviously, when we came here, we knew this was the start of a long journey. We didn't expect anybody to fix her on this trip. Her progress is clearly going to be determined by the amount of therapy she has and the quality of that therapy ..."
Jennifer had similar thoughts.
"A year-and-a-half ago, to have a geneticist at UCLA tell us there's no hope, basically what he was saying to us was take your child home and watch her die, which gave us no hope," Gracie's mom said. "So, a year-and-a-half to now is like night and day. She literally couldn't move anything on her own at that point and now that she's taking steps, close to sitting up on her own, she's supporting herself standing, and weight-bearing on her hands and knees, all of those things are things we never thought were possible. So, it just goes to show you can't always listen or believe what doctors tell you because they're human; they don't always have the answers. And in this case, it's a good thing that he was wrong."
Thanks to the generosity of Boulder City residents who supported the Sauers with more than $16,000 in donations and silent auction purchases, this trip won't be their only visit to the Napa Center. Jennifer has already talked to center director Lynette LaScala about coming back at the end of the year.
"Lynette told me before we got here we'll be planning our next trip and we're already looking to bring Gracie back probably the end of November, early December, and luckily, because of the fundraising efforts, it will be possible to do that," Jennifer said. "What we'll plan on doing is just the four sessions, because I think that's the most beneficial, and possibly, the Tomatis again, but we'll see after this time."
For Gracie and her parents, the last of three consecutive Fridays spent in El Segundo, Sept. 12, was a memorable day.
Not only was it the end of a tiring learning experience, but it also marked the completion of Gracie's therapy at the Napa Center.
Gracie and five other children -- Gracie was the youngest and 13-year-old Jonathan was the eldest -- graduated that day with each one receiving a personalized trophy to commemorate their visits.
For Jennifer Sauer, it truly was a happy occasion.
"I think it was a great trip and we made kind of what we made over the last year-and-a-half -- slow, steady progress -- but I think that what she's done in the last three weeks would have taken her months and months to accomplish at home," she said. "I'm just looking forward to bringing her back and seeing what she's going to do next time around."