Lost Time and Missed Milestones
A big family gathered around a dinner table. Mom, grandma, great grandma, aunts. All eating together, laughing. The youngest of four kids, Cassidy age two, is mimicking the grown-ups and her siblings with dramatic gestures. The simple pleasures of a supportive family network, and a normal scene in a kitchen.
But what Cassidy and her family have gone through is anything but normal. And yet, her experience so clearly underlines the impact that Any Baby Can has on a family.
A Mom's Instinct
Within hours of being born, Cassidy’s mom Crystal just knew something was wrong. Cassidy would nurse but scream in pain. After feedings she would be wet with sweat. Her eyes would roll back, which looked like seizures to Crystal. But the doctors and nurses said Cassidy was fine and they didn’t see anything medically wrong. She was discharged and went home, but that first week of life was horrible. Cassidy just wasn’t eating. She tried everything the doctors recommended, but still Cassidy would cry, throw up or seize.
Crystal took her to the emergency room, and her sugar level was at almost nothing. They admitted her into the NICU immediately where she got an EEG, spinal taps, and various tests. They began feeding Cassidy with a G-tube, but she couldn’t keep her sugars up. By the time she was 4 months old, she weighed 25 pounds, nearly twice the average weight for a baby her age.
“I’m having to make decisions on things I know nothing about. I was Cassidy’s only voice. She was counting on me and I wasn’t going to stop,” recalls Crystal.
In this moment of dread and isolation—Cassidy’s family wasn’t allowed to come to the NICU because of the coronavirus pandemic—Crystal jumped into action. She began educating herself on all the tests and medical terminology she was hearing. She found an article about someone who had a pancreatectomy, which could possibly help Cassidy.
It took four months in the NICU before Crystal was connected with a specialist in Fort Worth. He was able to remove 90% of Cassidy’s pancreas. But now she faced an uphill battle to make up for the lost time and missed milestones.
The doctors at Dell Children’s Hospital suggested that Crystal reach out to Any Baby Can. At 6 months old, Cassidy couldn’t swallow formula, roll or really move at all (due both to her weight and atrophy). But Cassidy had a spark, a vigor for life that told Crystal that she’d be okay.
Cassidy received feeding therapy, physical therapy and occupational therapy from Any Baby Can. She had therapists at her house two or three times each week. Some visits were discouraging, with little progress and a lot of frustration. But each time Cassidy improved, even in the smallest way, it gave them hope.
“They did not give up on her. Any Baby Can did not give up on my child. They fought with me. I finally had someone I could call my teammate,” says Crystal.
Crystal and her team of therapists worked with Cassidy to overcome enormous obstacles. They were able to get her rolling, sitting, and even eating purees within six months. She started walking and hasn’t stopped since! She's finally meeting her milestones in so many areas. Cassidy climbs stairs and follows her mom and aunties around the office of their family business.
Kids can overcome and thrive, when they’re in an environment that fosters that growth.
A Teammate in Your Child’s Success
As a parent, it can be intimidating to go into pediatric specialists’ offices. You want the best for your child, but you can’t always understand the terminology, or questions come up only after you’ve left the visit. You assume the doctor has the full picture, but every child is unique. At Any Baby Can, our line is always open. Parents can always reach our therapists or case managers. There’s no question too small, and all ideas are worth exploring. We tell our clients: You as the parent are the expert in your child. And with that comes a sense of teamwork and collaboration in meeting goals.
“Martha helped me on the phone with another facility. Isabel helped send emails on my behalf. The teamwork was there. I was 100% backed up by Any Baby Can. If I couldn’t get a hold of someone, I knew they could!” says Crystal.
Cassidy’s feeding therapist Martha allowed everyone to be involved in whatever way they could. She taught anyone who was around how to work with Cassidy. She was understanding of the connectedness of their multicultural, multi-generational family. Out of this work comes strong relationships among client, child and therapist.
Although she doesn’t have many words, Cassidy is expressive and adamant—just like her mom. Next, Cassidy will be assessed for speech therapy. That'll be another milestone to address. But for now, the whole family is together, enjoying the simple joys of having a two-year-old, thankful every day for how far she’s come.
“If I hadn’t met Any Baby Can, I’d have a different child. I would have a baby on a G-tube. She would still be overweight. She may not be walking,” says Crystal.
Just last month, Crystal went to Ft. Worth to meet another parent who was scared to get her daughter’s pancreas removed. The mom spoke only Spanish and since Crystal is bilingual, she was able to provide reassurance and communicate information in Spanish. Crystal told her the same thing she repeated to herself when Cassidy was going through her treatments: “If you have faith, keep that faith.”
Crystal’s story shows the lasting impact that fully empowered parents can have, even after kids are discharged from our programs. Once a parent truly believes that someone is listening, understanding and advocating for their child, they’re better able to face life’s challenges.
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