Moebius Syndrome - Adeline
Moebius Syndrome – Adeline
Adeline, and her twin sister Eliza, were born on July 1, 2014, in Portland, Oregon. Having twins was a complete shock to her father and me! My pregnancy was very healthy, but there was some time when Adeline was not showing the amount of expected growth, and so the doctors diagnosed Intrauterine Growth Restriction. She was always smaller and less active than her sister Eliza. The girls were born at 37.5 weeks. Adeline was 5 pounds, 2 ounces, and Eliza was 7 pounds, 4 ounces.
Needless to say, the moments, days, and weeks after birth were a whirlwind of NICU doctors, specialists, monitors, and tests. It was a very confusing, challenging, and worrying time, with so many questions, not to mention having a second newborn to care for as well. We are so thankful for having family support during this time to make sure that Adeline was getting constant care. Adeline was born with a cleft palate, and after a couple days of trying various feeding methods, she needed a nasal tube placed. A week or two in, the neurologist mentioned that Adeline might have Moebius Syndrome, and after we researched that night, we felt that this was likely true.
Adeline has come such a long way since this difficult time. She is at a healthy, average weight for her age, with help of her g-tube which was placed when she was two months old. She is working on getting ready for crawling, and she is practicing standing. Adeline receives early intervention and private therapy (physical therapy, occupational therapy, and speech & feeding therapy). We recently discovered that she needs glasses. Adeline claps and we are working on sign language. We are so elated to see elements of her personality shining through. Adeline loves books, musical toys, toys with lights, looking at faces, and snuggling in her blankets. She is very ticklish! And she has a loving sister who gives her many hugs and kisses each day. Adeline is always watching and learning from her sister!
We are excited to watch her continue to grow and develop, and we appreciate all of the invaluable support and wisdom we have received from the Moebius community!