Relying on a collection of angels

August 7th, 2018
Lorelai Rodriguez, 11, warms up before playing a match with her volleyball team, The Speeding Turtles. Photos by Mark Reis.

Lorelai Rodriguez is a typical 11-year-old girl. She loves to talk. Her favorite singer is Taylor Swift and she has a talent for Hip Hop dancing and volleyball. Her favorite foods include French fries and potato chips.

What’s not so typical about Lorelai is everything else. She has an inner strength, resiliency and positivity that belie her youth. She manages a long list of health challenges with a grace that few learn in a lifetime, let alone one short decade.

Lorelai was diagnosed with epilepsy at age 4; juvenile arthritis at age 6; POTS – Postural Orthostatic Tachycardia Syndrome – at age 7; psoriasis at age 10 and psoriatic arthritis before her 11th birthday.

She has seen the inside of hospitals from New Mexico to Seattle and now, UCHealth Memorial Hospital in Colorado. A few months ago, she had a Brain MRI (routine for her seizures since it had been a while since her last scan), and an MRI to look at her TMJ (temporomandibular joint), as there was concern her arthritis was having an impact on this joint (locking, clicking, etc.). The MRI revealed more than anticipated. She had arthritis in her TMJ, a mal rotated L hippocampus, and severe sinus disease affecting all of her sinus cavities. In an immunosuppressed child this can be dangerous when the “dirty dish water” so to speak is just sitting there with no place to drain.

“I don’t know how, despite everything, she’s always OK,’’ Jennifer Rodriguez said of her daughter. “She’ll always be the most positive, no matter what it is. If you say something negative, she’ll always pick out the best quality of any situation.

Lorelai Rodriguez, 11, gets a hug and a kiss from her dad, Dustin Rodriguez, between sets during a match with her volleyball team.

“We can be at a restaurant, and we haven’t seen the waitress in forever, and she’ll say mom, ‘You don’t know what they’re going through,’’ Jennifer said.

That kind of wisdom comes when you’ve been through a lot. Lorelai, born in New Mexico, began experiencing health problems while she sat at her desk in pre-school. She was using red and blue crayons to color a hot air balloon when, inexplicably,  she fell out of her desk and struck her head on the floor.

Lorelai started writhing and spitting a foam-like substance. Her teacher ran to her, picked her up and carried her to the bathroom.

“I didn’t remember any of it,’’ she said. “But my parents told me that I didn’t remember who anyone was. I went to the doctor and my dad was very sad because I couldn’t remember him. ’’

The diagnosis: Epilepsy, a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.

Jen Rodriguez caresses the face of her daughter, Lorelai.
Jen Rodriguez wipes a tear from  the face of her daughter, Lorelai Rodriguez, 11, following her volleyball team’s loss in a volleyball match. Photo by Mark Reis

Epilepsy, Lorelai said, causes what she calls “auras.’’

“Everything in your vision goes foggy and you can’t see around. Everything is just dizzy and it feels like the entire room is just spinning and spinning,’’ she said.

The epilepsy diagnosis was the first of many diagnoses. She began exhibiting signs of rheumatoid arthritis to her pediatrician at the age of 5, but due to a lack of pediatric rheumatology resources in New Mexico the family moved had moved to Seattle by the time she was 6. This way they could be closer to specialists at the Children’s Hospital there. She was diagnosed with juvenile arthritis and received treatment within months of living there. Not long afterward, at age 7, she was diagnosed with POTs, a condition in which a change from lying to standing causes an abnormally large increase in her heart rate.

At her school in Woodland Park, the gym teacher modified exercises so Lorelai would not have to bend over, since this would cause her to lose consciousness frequently. About the age of 10, doctors began to notice red patches on Lorelai’s skin, and they diagnosed her with psoriasis, and a few months later, when her nails began to deform, dent and thin, she received a diagnosis of psoriatic arthritis.

When Lorelai tries to tell her schoolmates about all of the challenges that she faces, her friends are incredulous.

“My friends don’t believe me,’’ she said. “I’m like, seriously, I have this and it is a big thing and a friend, she says, ‘You don’t have it.’ Epilepsy and arthritis, they don’t believe me – not even the teachers.’’

She once asked a teacher for permission to leave class and go to the school nurse to get her arthritis medication, and the teacher replied, “You don’t have arthritis,’ ’’ she said.

Every Saturday, without fail, Lorelai gets a shot for her arthritis.

“I grind my teeth if I’m scared, nervous, anything like that,’’ she said. “So I always grab a wash cloth or something to bite on so I don’t ruin my teeth. I do that every Saturday so I bite on something or I squeeze my dad’s hand. Every time I take my shot, I lay on my dad.’’

She also relies on a collection of angels and a Jesus doll.

“It’s a statue figure, and he is big … and I’ll hang on to him and he makes me feel better,’’ she said.

A few months back, doctors told Lorelai that she would need surgery to clear obstruction in her sinuses.

“Coming into the hospital that day, she was a ball of nerves. Her anxiety level was through the roof, and we were having a hard time calming her down,’’ Jennifer said.

An 11-year-old girl anticipates a volleyball serve from opposing team
Lorelai Rodriguez, 11, during a match with her volleyball team, The Speeding Turtles.

While preparing for surgery, a pre-op nurse took Lorelai’s vital signs and talked with her. Lorelai began to calm down. The anesthesiologist and her surgeon assured her everything would be alright and the OR nurse assured Lorelai that all would be OK. The OR nurse called Jennifer every hour with an update.

Once in the OR, Lorelai became frightened and said she didn’t want to go through with surgery. Her mother stayed with her until anesthesia was administered.

When Lorelai woke up from surgery, the feeling of being able to breathe was dramatic.

“I could breathe out of both sides of my nose; I never knew breathing was supposed to feel that way,’’ she said.

She recently returned to Memorial Hospital to meet with caregivers and tell them: “Thank you for the surgery. I can breathe.’’

About the author

Erin Emery is a writer for UCHealth and is based in Colorado Springs.