Emma is the most wonderful, stubborn, beautiful and opinionated little girl we can imagine. While we have spent too much time worrying (and crying) about her, we have also spent a lot of time laughing with her and savoring every milestone that she reaches.

She became very jaundiced shortly after her birth, and we spent a week with her in the hospital under the "bili-lights." She attracted a bit of extra attention due to her small size, full head of jet-black hair, and funky thumbs. During her extended stay the doctors checked out all her major systems, and we were fortunate that they found no significant problems.

As it turns out, her pediatrician had seen a patient with RTS during his residency and suspected Emma might have it. A geneticist confirmed his suspicion when Emma was about 1 month old.

Emma is now followed by many terrific doctors and therapists: an orthopedic surgeon, a pediatric orthopedic hand surgeon, an ophthalmologist, a geneticist, a PT, an OT, an SLT, a developmental educator and a nutritionist; not to mention her pediatrician.

She started sitting on her own (for very brief moments) at about 8 months, but it was another 4+ months before she was really good at it. By 14 months her favorite activity was pulling herself up from a chair on her toy box and then rooting through it. "Out" was a marvelous concept to her. When she was 16.5 months old her little sister Sarah was born, and her life changed dramatically. No longer able to monopolize Mommy's time she was forced to become more independent (a good thing). By 17 months she mastered "in" (also a good thing!) At 18.5 months she started to crawl and became very good at it very quickly. By around 19.5 months she was pulling up on everything and getting into all sorts of trouble! Then, when she was 20 months old she had both her thumbs and eyes straightened. The fingertip to armpit casts set back her crawling a bit, but after 2 weeks she figured it out and was off getting into trouble again.

Emma is very vocal, but entirely non-verbal. She understands an increasing number of words, and is starting to use a few rudimentary signs. We are also starting to use pictures to help her to communicate.

Emma and Sarah have a tremendously loving and supportive extended family of 4 grandparents, 2 aunts and an uncle. We are grateful for all of their help and love.
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Becky Celuzza