Fast Finder:
Critical Difference Stories: Birth
Never Give Up: Claire and Julia Gambassi Story
WATCH
VIDEO
Expectations
It’s a parent’s joy to see their children grow and learn; learning
to sit-up, speaking their first words and taking those first steps. It’s
no different for Sara and Ron Gambassi with their twin girls Julia and Claire.
But while learning to crawl is a pleasing accomplishment for most children,
when it came to the Gambassi twins it was like a Harvard graduation.
With two boys, Alec (15) and Jack (9), Ron and Sara were already experienced parents when their twin girls were born. They knew what to expect from newborns, infants and toddlers, and when to expect it. But sometimes you need to adjust your expectations.
Born at 31 weeks, the twins were characteristically small for twins, 3lbs-6oz and 3lbs-10oz. Ron and Sara were prepared for their newborns’ stay in the neonatal intensive care unit (NICU). Both sisters had an irregular heartbeat and apnea, which kept them in the NICU for nine weeks. Such problems are not uncommon for preemies. When the girls were breathing on their own, they were sent home, within a day of their original due date.
Concerns
Before leaving the hospital, a nurse spoke to the parents about developmental
risks with preemies, and recommended a physical therapy evaluation, which lead
to in-home physical therapy. And for the first eighteen months, a therapist
visited their home once a week, and worked with the girls on basic developmental
skills.
Both babies remained on a heart monitor until the apnea and heart rate issues were totally resolved in the tenth month. It was an issue, but not a huge concern.
Another challenge was the twins’ apparent discomfort. They seemed constantly irritable and cried at the slightest stimulation. Even sounds seemed to bother them more than normal; a closing door would upset them. Their parents picked them up to calm them, which only made matters worse - the girls didn’t want to be held.
Of greater concern was the girls’ reluctance to feed. By not eating as they should, the girls were not gaining weight as they should. Ron and Sara knew that slow weight gain was a common problem for preemies, so while they were concerned, the belief was that this would resolve itself.
Realization
After five months, their irascible demeanor and eating
problems remained. Ron and Sara were becoming more anxious about their daughters’ issues
with each passing week. To help the girls gain weight, NG tubes were used.
At feeding time, the thin tube was inserted through the nose down into the
stomach, delivering liquid food directly to the stomach. Their ongoing irritability
was believed to be associated with an ongoing reflux condition. While most
newborns outgrow that problem within the first three months, their reflux persisted
until surgically corrected at eight months.
At the time of the reflux surgery, a gastrostomy tube (g-tube) was surgically implanted in the stomach of both girls, one end protruding through the tummy. Feeding by mouth was still the first approach, but the g-tube allowed sufficient nourishment to be fed into the stomach.
Believing the medical issues were behind them, Ron and Sara could now focus on the girls’ development. Progress with therapy had been painfully slow. They kept waiting for the girls to catch-up with their peers developmentally. At two-years-old, Claire and Julia were still “infantile,” spending most of their day lying down. They still hadn’t achieved the basic skills of rolling over, sitting up, talking, or eating on their own. It was now a consideration that a more deep rooted problem existed, beyond the common preemie challenges.
“For the first couple of years you think you’re going to pull out of this…you think everything is going to turn out fine, so you're motivated,” Ron reflected. “But then you realize everything is not going to turn out fine so you have to go to a much deeper place to find your motivation.”
Insight
The children suffered from a genetic sensory motor
disorder. Sensory
receptors in their central nervous system were sending faulty information to
their brain regarding sound, touch, taste and movement. This sensory disability
prevents the normal course of motor skills development. Simple skills
that come naturally to other children must be taught to the twins. There is
no learning to roll-over or crawl on their own; they must be taught every step
of every action. It could take months or years to learn even the most
basic skills.
With limited treatment options Sara and Ron opted to ramp-up the therapy. A friend had referred them to Saint Alphonsus Rehabilitation Services (STARS) for speech therapy, so when it was time for a change, they turned to STARS for the twins’ physical and occupational therapy.
“They really took a chance on us,” Ron recalled. “The girls were uncooperative; they cried and screamed all the time. Not the kind of kids you would want in a therapy program. It would have been easy to dismiss them, but these folks were so insightful at Saint Al’s.”
Jumpstart
When the girls turned three, they were enrolled in
the STARS Jumpstart Program. “Jumpstart
was more intense. We call it preschool,” Sara stated. “They have
one therapist for each child and it’s a preschool program. Each
child is working on different things, but they’re together with other
kids- that helps them with the social part.”
Jumpstart provides a comprehensive program of neuro-developmental treatment, sensory processing, language-based curriculum, and early childhood development philosophies for children between the ages of 3-6 years. They provide occupational, physical, and speech/language services in an interdisciplinary approach. They meet 4 days a week for 3 hours a day. “When we got started with Jumpstart and STARS, they really started showing improvement on a regular basis,” said Ron.
The first year at Jumpstart yielded significant improvement. The therapists worked to overcome the sensitivity issues and then worked on developing a line of communication with the two-year-olds. “At the end of the year they had learned nearly 20 signs so we could communicate to them,” Sara recalled. “They weren’t able to talk, but they could communicate with us.”
“Once you open the path of communication you break down the frustration level of the kids and they’re more motivated to learn,” Ron remarked. When the girls were 3-1/2, they learned to roll over.
Dog Days
The twins were four-years-old when they met Ovelle,
a therapy dog with Dustin’s
Paw. The volunteer therapy program, Dustin’s Paw, uses specially trained
service dog to help motivate disabled patients to learn. The program’s
founder, Diane Rampelberg, brings Ovelle to the class twice each week. The
good natured Labrador-mix interacts with the twins and other children during
therapy, adding an element of fun and distraction to tedious and painful therapy
sessions.
“The kids were willing to take another bite of food so they could feed the dog,” Ron said. “Or they would be willing to walk and find the dog playing hide-and-seek. It was a distraction and their enthusiasm would go up.”
Sara and Ron were so pleased with the impact Ovelle made on the girls, they acquired their own service dog, Zane, a three-year-old Lab-Retriever mix.
Rejoice
Claire and Julia are now seven. They can sign nearly
40 words and can verbalize 2-dozen words. They can feed themselves and can
walk short distances with a supporting hand to steady them. To get around
on their own, the girls “scoot
on their bottom” - crawling has proved difficult.
Looking back, Ron and Sara reflected on those who have helped them the most on their journey. Their Medicaid Service Coordinator opened up “a whole new world” of programs and medical options. And while in doctor’s office waiting rooms the conversations with other parents yielded some of the most valuable information. “When we started at Saint Al’s, the therapists were more educated on the resources available to us,” Sara remembered. “And I don’t know how we could have done this without our two boys. They helped keep us sane.”
Ron then commented, “I’m convinced that without the Jumpstart Program we wouldn’t be anywhere near the level of progress we are at today. They are happy little girls, who love to laugh and who love to socialize with people.”
Ron summed up their experience, “Everyday is like climbing a mountain. It was five years before we could sleep though the night - but you keep pushing. Every little baby-step of improvement gives you motivation to keep pushing…and never give up.” Offering insight for other parents, Ron said, “Pull the joy out of it…there is joy. And rejoice at the little bits of progress, because they are huge.”
Recently the Gambassi family had another reason to rejoice; at seven-years-old, Julia and Claire have learned to crawl.
