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Bella


Out beyond ideas of wrong-doing and right-doing there is a field. I’ll meet you there.”
– Rumi

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This is what I call SUCCESS!

I was inspired to compose my thoughts soon after receiving this photo and comment from a mom who had recently left my care and relocated in another state.

“Look at that running gait!! Pretty awesome. And who would have thought she’d be chasing Olivia?” She wrote.

The hours, days, and years that went into this spontaneous, natural moment of big sister chasing little sister through the grass on a warm summer day, were not lost on me.

I first met Bella at age 2 1/2, and Julie, her Mom, when they relocated from there home in the Sierras because Bella needed to be at sea level in order to manage her pulmonary hypertension. Bella was oxygen dependent, underweight and experiencing global delays.

Bella had already had reconstructive craniofacial surgery to correct her synostosis, as well as corrective eye surgery. He diagnosis also included reflux, tracheal leukomalacia, torticollis and an enlarged heart.

Bella had been seen for physical therapy though a local Early Intervention program in Nevada. When I asked mom what type of activities they were doing she mentioned things like throwing a ball and sitting on a bench. I imagine this treatment program was developed based on a standardized test that was given to Bella. But Bella required a program that truly addressed all the underlying issues that prevented her from catching a ball or sitting on a bench.

We began an intensive program that included PT twice a week. Her sessions of hands-on PT focused on addressing her need for improved biomechanical alignment as well as improving her proprioceptive awareness and modulation of her tone. Like many children with low muscle tone, Bella had difficulty with gradation of muscle action and poor postural control.

We created a visual schedule for our sessions showing a list of what would occur during the session and when. This gave Bella a bit of control over the session. She needed to engage with me and learn to trust in the process. We must have used every piece of equipment I have in the clinic including the Cage (link here), the Pilates Reformer and anything that would serve my purpose and inspire Bella.

As you may imagine, I was not the only one on Bella’s team. Over the 3-year period, she also had oral motor therapy, speech and language therapy, OT, pediatric acupuncture, play therapy and a social learning group.

In the final weeks of working with Bella, Julie and I were able to review the progress her daughter made. I said to Julie, “this was a real head-down situation and you rocked it!” Julie knew exactly what I meant because she is a trained/licensed pediatric psychologist and is well acquainted with the time and consistency required for that kind of transformation and realize the potential that is seen, but not yet manifested.

In the photo, Bella is running with her sister, just like any other 6-year old would. I alone can’t take credit for Bella’s progress, as it required the grit and determination of her team, especially on the part of Julie/Mom, who was the captain of our ship.

Smooth sailing Bella!

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Take it to the Max!

max2We wanted to share some exciting news regarding one of our patients, Max. We first sawMax for PT when he was 5-years-old and he was experiencing some upper body and core weakness. He was diagnosed the following year with a rare form of LGMD (Limb Girdle Muscular Dystrophy).

Max’s parents discovered Dr. Jerry Mendell, a pediatric neurologist at Nationwide Children’s Hospital in Columbus, Ohio, who has been working to cure Max’s exact form of LGMD for over a decade. Max was invited to be the first child to be part of Dr. Mendell’s gene therapy clinical trial. On August 4th, Max received the gene therapy injections into his legs. All went well and Max will be travelling back to Ohio for the next few months for more injections and follow up. Read more about this exciting new clinical trial for LGMD2D Patients.

Back at home, Max has a long road of recovery ahead, including lots of physical therapy and strength training for his legs. We are hopeful that Max will have a good outcome innovative procedure.

A Teachable Moment…Be Ready for the Cure

What set Max apart and allowed him to receive this innovative therapy is that Dr. Mendell felt he was “an ideal candidate”. This is due to his family’s persistent efforts to maintain Max’s strength, ROM and mobility by doing exercises and stretches at home on a daily basis.

Many families are looking for something that will improve their child’s condition, but it is the daily maintenance and diligence of some very simple activities, that allowed Max to be “ready for the cure”. Ongoing support by his family and community will continue to helpMax in his brave and courageous adventure.

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A Visit to Disabled Sports USA Far West

On Thursday, December 29 I visited Alpine Meadows Adapted Ski Program near Truckee, California. I got a grand tour of the facility with my friend, Dave Littman, who is one of the lead instuctors here at Alpine Meadows. Using state of the art equipment that is adapted to fit each skiers needs, everyone that comes here has an amazing experience on the slopes. Over the years, I’ve had a nunber of clients particiapte in this fantastic program and today I got to experience it first hand. Here are some pics:

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Every skier goes out with 2 instructors. The care and expertise that the instructors offer each student is amazing. Skiers get real instruction about how to shift weight, turn and maneuver in the snow. There is such value in terms of learning a new skill, feeling confident and the thrill of skiing down a mountain. Their motto is “If I can do this, I can do anything!”

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Here I am with Amberlynn and her Mom. She was kind enough to let me shadow her down the mountian.

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This is the whole gang. Dave and I are on the left. What a thrill…especially for me! Thanks everyone at Alpine Meadows for a great morning of Adapted Skiing. You rock!

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My Lecture for the Myotonic Dystrophy Foundation

I’ll be spending the next two days at the 2012 MDF Annual Conference in Burlingame, CA. My connection to the disorder is through one family that I have followed for about 10 years. I was honored to be asked to present a segment on the Pediatric Physical Therapy Management. I look forward to meeting parents, patients and professionals at this event.

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My Lecture on Autism

On April 17, 2012, I gave a lecture with Margaret Bourne MS CCC-SLP and Miki Romo OTR/L Pediatric Occupational Therapist called Working Together to Create a Therapeutic Foundation: An Interdisciplinary Approach to Early Intervention and Follow-up for Children with Autism at the Marin County Office of Education. See more info on this PDF.