Wednesday, September 6, 2017

The Girl with the Sunburst Tattoo

The occupational therapist was taking Kyra’s medical history.  Again.  It’s a story I’ve told hundreds of times, to hundreds of medical professionals over the past 21 years.  In fact, I’ve told this same story more than a dozen times to professionals from this same agency.  Still, they think they need to hear it again.

As if it would change.

If only it would change.

Of course, it doesn’t change. It only gets longer.

But sometimes there's a new twist, like today, that changes even my perspective.

Today, the occupational therapist that is helping us obtain splints to prevent further joint damage to Kyra’s wrists went through the same evaluation routine: Pregnancy-Birth-Baby-Now-Blah-Blah-Blah.  I squinched my eyes into memory mode, and rattled off more statistics than the most accomplished sports pros can possibly keep in their heads.

Then, the OT surprised me.  (Which is very hard to do.)  “I’ve never seen anything like it,” she said as she gently took Kyra’s hand. “Is this a tattoo?”

Kyra grinned, and pulled her hand away from the therapist.

“That’s where her hand was burned,” I explained.  “When her wrist got stuck on the touch lamp that was beside her bed.  We were just trying to make her a little more independent, and she ended up with a skin graft, and a lot of rehab.  It happened about 10 years ago.”

About ten years ago, touch-sensitive technology was the new "wow": We were excited that Kyra would be able to use this technology to gain a bit of independence.  We put a touch lamp beside her bed, so she would be able to take control of at least part of her world: Turning her bedroom light on and off.  Unfortunately, even that tiny bit of independence was denied her when our "great idea" turned into a nightmare.

Ten years later, technological advances have exploded, and we have jumped on the bandwagon with both feet.  Finally, with her eye gaze communication device, Kyra is gaining some of the independence we've hoped for.  By just looking at her computer screen, she can command her environment in all sorts of ways: Telling us her thoughts, turning the channel on the TV, watching YouTube videos, staying in touch with her sisters.  Turning her light on and off safely.

“That burn must have been so painful: But now it’s so beautiful,” the therapist said.  “Like, somebody would get that tattoo on purpose.  It’s a perfect sunburst.”

That’s my Kyra.  Making a sunburst out of a burn.   

Peace and hope, 


Thursday, July 27, 2017

Hello from Plano!

We had a great visit with Dr. Jan Brunstrom-Hernandez and the team at 1 CP Place during our visit to Plano, Texas.  Even after 21 years of cerebral palsy “experience”, we found out there’s still more we can do to help Kyra live her best life.

We first saw Dr. Jan at the cerebral palsy clinic she started at Children’s Hospital in St. Louis, but we hadn’t seen her since she made the move to Texas.  With Kyra’s transition out of high school, and her recent bouts with pneumonia and other health issues, we thought it was time to seek out her help again.  1 CP Place, Dr. Jan’s clinic in Plano, Texas, is a unique medical clinic that specializes in treating children and young adults with cerebral palsy.

At the beginning of her visit, Kyra used her Tobii eye gaze communication device to talk with Dr. Jan about the people we were visiting.  She also showed off her ball-throwing technique and gave high-fives to the 1 CP Place team.  This initial phase of the appointment was captured on video so Kyra’s current movement patterns can be reviewed, and compared with future visits.  Then, Dr. Jan performed a thorough neurological exam, and we discussed Kyra’s nutritional intake, medical and therapeutic interventions, daily activities, recent health issues, and future goals.  Finally, we received specific recommendations for adjusting Kyra’s medications and supplements to help her maintain emotional balance and offset the negative effects of her seizure medication, and suggestions for equipment and positioning to protect Kyra’s extremely thin bones and skin.  We also received plenty of understanding and encouragement.

Dr. Jan is passionate about defending and supporting the health, dignity, and dreams of her patients because she lives with cerebral palsy herself, and faces many of the same health challenges and stigmas that her patients face.  This summer, the intern at 1 CP Place is a bright, passionate pre-med student, who also happens to be a former patient with cerebral palsy, and is learning first-hand what it will take to prove herself as a talented medical professional.  I’m excited to see another young woman with “coolabilities” pursue her passion, and I’m looking forward to hearing about the people she impacts and inspires as she lives out her dream.

If you’re looking for someone that will listen, observe, evaluate, collaborate, and help you put all the CP pieces together for your family, we highly recommend making the trip to 1 CP Place.  You might even find yourself on Dr. Jan’s “wall of fame”!

-- -- --

As we discussed Kyra’s need for additional iron and fiber, Dr. Jan suggested blackstrap molasses (iron) and sweet potatoes (fiber), as well as blueberries (vitamin C helps iron absorption).  So, I’ve concocted a new “triple-sweet breakfast smoothie” that includes these three powerful foods, and blends well for sipping or g-tube feeding.  The recipe below has about 350 calories, and is rich in iron, fiber, protein, and taste!

Triple-Sweet Breakfast Smoothie

  • 2 Tablespoons blackstrap molasses.
  • ½ baked or steamed sweet potato, cooled. (I leave the skin on for more nutrition and flavor).
  • 2 hard boiled eggs, cooled and chopped.
  • ½ cup fresh or frozen blueberries.
Add enough brewed and cooled green tea (1/2 cup – 1 cup) to blend your smoothie. Avoid adding milk or other liquids that are high in calcium, which inhibits iron absorption.



Sunday, March 26, 2017

I Feel Awesome

Last Friday, Kyra and I had the opportunity to converse with a group of designers and researchers from California State University working on the concept that people with special conditions (i.e. “disabilities”) more often than not possess abilities that “normal” people don’t have.

For example, it is well-documented that blind people often develop superior hearing and tactile sensitivity, and people on the autism spectrum are often able to hyper-focus and solve problems with enhanced speed, creativity, and accuracy.

These researchers and designers postulate that when we understand, expect, and encourage these special abilities, people that have previously been denied meaningful education or work because of a glaring “disability” suddenly become economically valuable in the eyes of a school or business.

It’s a win-win situation long overdue.

Kyra and I had so much fun answering questions about Kyra’s talents, gifts, and interests, and learning about the projects and research the group was working on. (Once I figured out how the “zoom” video-conferencing thingy worked… )  The discussion gave me the encouragement and hope I needed: That people with special conditions such as Kyra’s can dream their biggest dreams for their future, and make those dreams come true.

As Kyra ages out of child-related agencies, services, and opportunities, we are finding that adults with complex conditions such as hers are expected to be shuffled off to a nursing facility, and left to endure days filled with television and the occasional visit from a high school group looking for community service points.

That is not acceptable.

So, I’ve been worrying and asking and calling and digging, trying to find out, “What do people do all day, and how can Kyra be part of it?”

And like a gift from above, I was invited to talk with some wonderful people at California State University that are asking this same question, and working toward a solution.

After our zoom-conference conversation, while Kyra was snacking on applesauce and peanut butter, I asked her to tell me what she thought about we had talked about that afternoon. Using her Tobii-Dynavox eye-gaze device, Kyra said, “I feel proud. I feel awesome.”

Sara & Kyra