Liam’s Journey

Liam’s journey has not been an easy one. After he was born, he spent 4 months in the Neonatal Intensive Care Unit in Cleveland after being diagnosed with Neonatal Abstinence Syndrome and Feeding Intolerance. After being discharged, we brought him home to Columbus to begin our journey to adoption and Liam’s journey here with multiple providers at Nationwide Children’s Hospital.

Over the next few months, we were able to learn more about Liam’s health- he was diagnosed with Pierre Robin Sequence, Neuro Fibromatosis Type 1, Klinefelter Syndrome, Developmental Delay, G-tube dependence, & Congenital Exotropia to name a few.

Fast forward to today Liam is a happy, healthy 2 ½ year old. He continues to see multiple providers at Nationwide Children’s for clinic visits and weekly OT/PT & speech therapies. He took his first steps a few days ago, which I believe would not have happened if it were not for his phenomenal therapist Catie Christensen. Her passion for the work is clear. She understands the delicate balance between challenging Liam and giving him rests. It is evident that she loves Liam like her own, she believes in his ability despite his delay, and his success is just as important to her as it is to us.

Now let me rewind two months- Liam’s greatest challenge is and has always been feeding. 10 weeks ago, Liam was completely G-tube dependent. We had been on the waitlist for the NCH Intensive feeding program for over 2 years! We were thrilled when he was next in line. The program consists of a multi-disciplinary team of people that worked with Liam and our family 3 times a day, 5 days a week, for 8 weeks working together to strengthen oral/motor skills, create a feeding routine, provide high calorie foods in a safe manner for Liam to swallow, weight monitoring and a focus on resetting behaviors seen during feeding that negatively impacted feeding overall. There were weekly team meetings, psychology meetings, and hands on nutrition demonstrations. Liam graduated the feeding program, taking all of his food orally! This program exceeded our expectations, and the team became part of our family. Every day we could feel their passion to help patients and families. They made the hard days, a little less hard by providing guidance, a listening ear and lots of encouragement.

Dr. Silva, the psychologist, spent time not only helping us with Liam but talking with us about our other kids and how the program impacted life at home. Maureen, the feeding therapist, became Liam’s person. Her knowledge and the way she communicated boosted our confidence throughout the program. She was his Champion and just as excited as we were when he hit his goals! His shy nature blossomed, shining a light on social/emotional skills Liam developed while in the program. We still have much work to do in the months ahead, from chewing solids foods & creating less structure (more natural) around mealtime but eventually his tube will be removed!

Many resources and efforts surround the success of this program, but it is worth the great rewards for the patients, families, and team. With the hope for more resources in the future, no family will have to wait an extensive period of time to address such an immediate need.

Liam will reach his greatest feeding potential with the clinic in his corner. Our family will be forever indebted to them for all they have done for Liam. Because of Nationwide Children’s commitment to best outcomes, Liam is in the best hands.

With immense gratitude,

Liam’s Family

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Liam’s journey has not been an easy one. After he was born, he spent 4 months in the Neonatal Intensive Care Unit in Cleveland after being diagnosed with Neonatal Abstinence Syndrome and Feeding Intolerance. After being discharged, we brought him home to Columbus to begin our journey to adoption and Liam’s journey here with multiple providers at Nationwide Children’s Hospital.

Over the next few months, we were able to learn more about Liam’s health- he was diagnosed with Pierre Robin Sequence, Neuro Fibromatosis Type 1, Klinefelter Syndrome, Developmental Delay, G-tube dependence, & Congenital Exotropia to name a few.

Fast forward to today Liam is a happy, healthy 2 ½ year old. He continues to see multiple providers at Nationwide Children’s for clinic visits and weekly OT/PT & speech therapies. He took his first steps a few days ago, which I believe would not have happened if it were not for his phenomenal therapist Catie Christensen. Her passion for the work is clear. She understands the delicate balance between challenging Liam and giving him rests. It is evident that she loves Liam like her own, she believes in his ability despite his delay, and his success is just as important to her as it is to us.

Now let me rewind two months- Liam’s greatest challenge is and has always been feeding. 10 weeks ago, Liam was completely G-tube dependent. We had been on the waitlist for the NCH Intensive feeding program for over 2 years! We were thrilled when he was next in line. The program consists of a multi-disciplinary team of people that worked with Liam and our family 3 times a day, 5 days a week, for 8 weeks working together to strengthen oral/motor skills, create a feeding routine, provide high calorie foods in a safe manner for Liam to swallow, weight monitoring and a focus on resetting behaviors seen during feeding that negatively impacted feeding overall. There were weekly team meetings, psychology meetings, and hands on nutrition demonstrations. Liam graduated the feeding program, taking all of his food orally! This program exceeded our expectations, and the team became part of our family. Every day we could feel their passion to help patients and families. They made the hard days, a little less hard by providing guidance, a listening ear and lots of encouragement.

Dr. Silva, the psychologist, spent time not only helping us with Liam but talking with us about our other kids and how the program impacted life at home. Maureen, the feeding therapist, became Liam’s person. Her knowledge and the way she communicated boosted our confidence throughout the program. She was his Champion and just as excited as we were when he hit his goals! His shy nature blossomed, shining a light on social/emotional skills Liam developed while in the program. We still have much work to do in the months ahead, from chewing solids foods & creating less structure (more natural) around mealtime but eventually his tube will be removed!

Many resources and efforts surround the success of this program, but it is worth the great rewards for the patients, families, and team. With the hope for more resources in the future, no family will have to wait an extensive period of time to address such an immediate need.

Liam will reach his greatest feeding potential with the clinic in his corner. Our family will be forever indebted to them for all they have done for Liam. Because of Nationwide Children’s commitment to best outcomes, Liam is in the best hands.

With immense gratitude,

Liam’s Family

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