Sarah Pearl

March 2, 2009 cl/cp, Craniofacial, Family Stories 0 Comments

by Julia, mom to Sarah Pearl from China with cleft lip and palate

Once upon a time, there was a baby girl with a cleft lip and palate, named Guan Yan Nan. Living in an orphanage in a Southern Province of China, she did not know there was a woman living in another land, who had been busy raising 4 other children, who was longing to come and wrap this baby in her arms and bring her little one home to stay. There was never a doubt in my mind, not to adopt a child with special needs. God had provided me with much experience and a variety of special needs children through parenting as well as teaching. Life being what it is, had shown me that it was the relationship with the child, not any particular label, that indeed made the difference. Guan Yan Nan, who came to be known as SarahPearl, was almost 2 when her Mama arrived at the Office of Civil Affairs with her 2 older daughters. She had the most exquisite eyes that solemnly stared at us. We looked so different from her! SarahPearl had her lip repaired in China when she was 11 months old. She was a tiny girl and surgery had to wait until she reached 10 lbs. The lip repair was successful and she has had many compliments on it from professionals as well as people who meet her passing by.

In China, I began to wonder about a hearing loss. She did not respond to our voices, which could be attributed to the language barrier. Upon visiting the Social Welfare Institute, around familiar Chinese speaking adults, she did not respond either. When we returned to The U.S, her hearing was evaluated and showed moderate to severe loss. We began to intently teach her sign language through videos and daily use. Fortunately ear vents were placed and slowly we could see an improvement in her hearing! Answered prayer! She had her palate repaired, 2 months after our return. Unfortunately, the rare complication of her airway closing arose and she had to be in ICU for a couple of days. She will have lots of dental work in her future and a couple of more surgeries on her palate and nose. She has had the benefit of a wonderful Early Intervention team. She has had some feeding issues, but has now gained weight steadily. She has speech therapy and will continue for years because of articulation and resonance. She learned hundreds of words in sign language and signs in her sleep! I will watch her as she sleeps and her little hands busily sign library, Mama, and boots! She must be dreaming about her favorite things! SarahPearl continues to add new words to her spoken vocabulary daily. Her first 4 word sentence was “I love my Mama!” She wasn’t walking when we were in China, and quickly, with experience has made great gains in her motor skills. She will continue to receive Physical Therapy, for some hip problems. Her progress is remarkable! She was very delayed in all areas of development and I had thought many of the sensory difficulties would be resolved in 6 months. They continue to hinder participation in some activities, but with the addition of a brushing program, we have seen changes! SarahPearl is sweet and eager to please. She is an observer, quiet, sensitive, and cautious until she is comfortable in a situation. Then she is a girl who can really have fun and run and play with the rest of them!

The hand of God was always there for both of us. It was His plan for her to be in our family and He gives me Faith that He will meet our needs. I am forever grateful. She is one of the best things I have done with my life!

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