Since the day she was born, it was quite clear that Erin Hughes knows what she wants. This determination helped her become the healthy little girl she is today.In January 2011, Erin and her twin brother Will decided to make an early appearance to this world. They were born three months early, each weighing just over a pound. The twins spent a combined 279 days in the neonatal center at Helen DeVos Children’s Hospital.
Erin was born with a heart valve that did not close and had surgery within a few weeks of her birth. Will had to undergo four surgeries, 14 blood transfusions, and spent three months on a ventilator. Today, the twins are meeting developmental milestones.
The family has overcome many obstacles, but in the past year their attention was focused on Erin being able to eat independently. When Erin was discharged from the hospital, she was not taking the bottle well and had to use a feeding tube to receive proper nutrition.
In the fall, Erin was referred to Mary Free Bed’s Feeding Program. Her mom, Julie, was pleased with the care from the beginning, especially with Erin’s feeding therapist, Linda Murphy.
“Linda was exactly we needed. She was kind, caring, knowledgeable, and held high expectations,” says Julie.
The first major obstacle for Erin to overcome was a willingness to put anything in her mouth. To help, Linda used biting and chewing exercise to improve her mouth muscles.
Next, Erin was introduced to baby food, cereal, and puffs. Linda used the Get Permission and Sequential Oral Sensory (SOS) approaches for feeding. The Get Permission Approach is offering appropriate food choices without forcing (caretakers offer food, children “give permission”, and eat), while SOS is a systematic approach of introducing the sensory characteristics of food before offering it orally to eat.
Julie acknowledges that she received great support during this time. Even the grandparents, who provided child care for the twins during the week, became involved in Erin’s feeding therapy sessions.
“The grandparents came along so they could learn how to feed Erin, too,” says Julie.
While Erin showed improvement with her ability to feed herself, she started to regress in April. Her parents decided to take a two month break, but stayed motivated. They knew that when Erin puts her mind to it, she can accomplish it.
The break seemed to work, because Erin’s feeding skills took off when she resumed therapy in the spring.
Beforehand, Erin was not eating solid foods, drinking from a sippy cup, or using utensils. She was strictly tube fed.
Erin is now able to do all of those things. In fact, she loves fruit and often requests which one she wants. She also enjoys hot dogs, grilled cheese, chicken nuggets, avocado, and bananas.
This success led Erin to graduate from feeding therapy in August.
“I never thought that we would get to this day,” says Julie.
Julie believes Erin did an amazing job this summer and is so proud of what they’ve accomplished.
“I never take for granted the moments when I see both of my kids drinking from sippy cups, just like normal kids. I love that I can put food on their trays and they eat it,” shares Julie.
Today, she is proud to say that Erin no longer needs the feeding tube. Julie is thankful for Erin’s success at Mary Free Bed’s Feeding Program and for Linda.
“Not only did Linda help Erin learn how to eat, but she also taught me what to do to help Erin be successful. Without her, we would not be here celebrating today!” says Julie.
Charlotte Milligan writes for the Stories That Move You blog and helps manage Mary Free Bed’s website and social media.