Sam will be three years old in December of 1997!
Sam is a very fun person to know. He is a great singer and dancer, and his favorite activities include going to high school and college football games where he can dance and cheer. His favorite animals are bears, his favorite food is ice chips, and he loves choo-choo trains! (He can even say "choo-choo!") He is also a big fan of Dalmations. He has his bedroom full of them... stuffed animals, posters, comforter, pillows, postcards.. you name it!
Sam works very hard on talking with his voice, but because of his hypotonia it is very difficult. So, he is learning American Sign Language. He is a very fast learner, and already has about 30 words and signs. We do lots of oral-motor stimulation to help him develop spoken language and also to address some of his feeding issues. It is very difficult for Sam to chew and swallow things that are not soft, so lots of times he amazes us by putting lots of things in his mouth at once! Fortunately, Sam loves to eat, so he is very willing to practice any skills that involve food. Recently, Sam started using a spoon and fork to feed himself. He is quite proud of this accomplishment!
Sam is very energetic, and loves to play! He can march, walk quickly, dance, and he can almost run. He enjoys playing outdoors with the neighborhood children, and he is working on learning to pedal a tricycle. He also enjoys sliding at the playground. Head first, of course!
He sat up at nine months, crawled for the first time on his first birthday, and he began walking when he was 22 months old.
Fine motor skills are a particular challenge for Sam. However, he loves to paint, color and draw. He also likes to do gluing activities, and he enjoys helping mom and dad stir and pour in the kitchen. We are working on using scissors, rotating his wrist, and being able to manipulate things like puzzles, peg boards, and toys that require buttons or cranks.
Socially Sam excells! He is friendly, compassionate and cuddly. He enjoys looking at babies and playing with his friends. He loves reading books (both with grown-ups and all by himself), singing songs, and listening to all types of music! If he sees someone crying, he will go and offer a hug and kiss to help them feel better. He enjoys rocking his dolls and stuffed animals and pretending to feed them. He also enjoys "cooking" for us in his kitchen. Corn on the cob is his special dish!
We are so proud of Sam! He is the absolute light of our lives!
We would love to correspond with other families that have children with FG Syndrome. We're particularly interested in comparing notes with folks who have similar feeding and language issues. We're also looking for other people who have dealt with unspecified seizure-like activity and who have had metabolic disease suggested as a possible diagnosis for their son.
These are some pictures from Sam's third birthday party. We had a special visit from Santa and Mrs. Claus, which made Sam very happy!
One of Sam's favorite activities is clapping. He's quite enthusiastic!
Sam enjoys trying to make baskets in his little basketball hoop.
This is Sam, his special friend Kaia, and Sam's mom and dad.
Sam was thrilled to see Santa!
If you'd like to see Sam and two of his friends, follow this link and see him with David (diGeorge Syndrome) and Noam (mitochondrial disease) at the Ronald McDonald House at the Children's Hospital of Philadelphia!
If you'd like to get in touch with us, follow this link to send us email!
