We are so thankful to the team of people working with Peyton to make her the best that she can possibly be.
Pediatrician – Peyton’s pediatrician is amazing. She has been with us from the beginning of this journey and she was actually the doctor that informed us of Peyton’s diagnosis.
Geneticist – We met Peyton’s geneticist when we were at Cedars. He has helped us to understand PWS from a clinical perspective.
Pediatric Surgeon – Peyton’s pediatric surgeon put her G-Tube in on Monday, May 14th, 2012. He did a beautiful job. The G-tube is a tube inserted through the abdomen that delivers nutrition directly to the stomach. With the G-tube, we are able to make sure that Peyton gets the fluid and calories that she needs to grow. We are happy to report that we are using it less and less and we look forward to the day that it is removed.
Endocrinologist – Peyton started growth hormone on September 14th, 2012. Growth hormone is a tiny shot given every night. Kids with PWS do not produce enough growth hormone and therefore a growth hormone injection is beneficial to aid in development.
PWS Endocrinologist – We have been consulting with a Doctor in Florida who specializes in PWS. We plan to fly to Florida to meet with her when Peyton is 1 year old. We cannot wait.
Pulmonologist – Peyton had a sleep study done prior to starting growth hormone and had severe sleep apnea. She was admitted to Children’s Hospital Los Angeles for a couple of days. We went home with Oxygen for her to use while she is sleeping to help keep her oxygen saturation high, and started her on reflux medication. We had a repeat study done in August 2012 and Peyton showed great improvement. Peyton is still on Oxygen at night and sometimes for naps. We also have a pulse oximeter to monitor her oxygen saturation at night and sometimes for naps, as well. She is still on reflux medication. We will have a repeat sleep study in the Spring of 2013 to reassess Peyton’s Oxygen needs.
Occupational Therapy – Peyton receives occupational therapy two times a week to help with her with the development of her fine motor skills. The OT works with Peyton on her suck/swallow reflex and the strength of her suck so that Peyton can soon take all of her bottles by mouth and say good-bye to the G-Tube.
Physical Therapy – Peyton receives physical therapy once a week to help her with the development of her gross motor skills.
Infant Stimulation Therapy -Peyton receives infant stimulation therapy twice a week to help with her socialization, interaction, and play skills.
Dietician – Peyton is monitored by a dietitian to help make sure she is getting enough calories to grow and develop. She is also working on transitioning Peyton from needing her G-Tube.