Snap-Shots of Samuel..He's 10! and What is Stickler's Syndrome?

It's amazing how time flies. Samuel has grown so quickly into his double-digits. I never notice how quickly my children grow, until looking at photos. The kids and I sat snuggled on the floor, flipping through pictures and remembering Samuel as he's grown into a handsome 10 year old.

He certainly has a story to tell. Samuel was born a big 9 pounds, with a head full of brown hair. He had a very small chin and was fussy. We soon learned,  he had a hole in the roof of his mouth....a cleft palate. With a bit of learning how to care for him, we got to bring him home and begin a journey of learning and loving.

Samuel was born with Pierre Robin Sequence and later diagnosed with Stickler's Syndrome. Pierre Robin is named for children with a small chin and nose. Many of these children are born with a cleft palate, like Samuel. Pierre Robin can be a characteristic of Sticklers. Sticklers is a connective tissue disorder that effects the soft tissues within the body. Samuel's eyes, palate, joints, and ears are effected.

At six months, Samuel got his first pair of glasses. His world opened up and his big beautiful eyes shone bright. He began to explore the world around him.

At 14 months, Samuel had his first surgery to close his palate. He no longer had food and drink coming out of his little nose while he ate. He's had several surgeries since, to revise his palate and tube his ears. His surgeries have not slowed him down one bit.

He's always loved reading and gardening.....

 Nature and playing.

 

 

He's good at improvising. When he was a baby, Samuel would hold his pacifier in his mouth with the palm of his hand, since he didn't have suction. When he would blow, he held his nose to help more air flow from his mouth, instead of nose and mouth at once.

A couple of palate revisions helped him to push more air out of his mouth and close the space between his mouth and nose.  

This inquisitive young man is such a joy to be around. I'm excited to see what he chooses to be in life. He loves God, his family, music, math, gardening, rocks, and minerals. The world is his canvas.

How can we forget......this was the year Samuel accidently sliced his pinky while cutting a home-made garden fountain. Did I mention....he's fearless....except for heights. 

 

He loves life. And, we love him. Happy Birthday Samuel. I hope you enjoy your 10th year exploring this beautiful world God has shared with you.