Hello friends and family,

It’s been a long time since we updated this page and we wanted you all to know that Leo is doing just great. He loves trucks, dogs, dancing, and bike riding. Halloween trick or treating was a big hit - Leo dressed up as a strawberry. Leo has grown into a uniquely good natured, happy toddler. His infectious jolliness makes us laugh more than we ever have before. He is very outgoing and has befriended many people in our apartment building. In fact he has a standing offer from the management for employment as a greeter.

Leo has made a huge amount of progress in his feeding and language. His cleft palate was successfully repaired in April 2021 and he takes almost all of his food by mouth, as formula or textured purees. Leo now knows about 50 words in American Sign Language and baby sign language. His first – and favorite – word was “birdie.” It’s thrilling to watch him discover language, and he has quickly learned more signs than us. While Leo wears his speaking valve and vocalizes all the time, he does not yet articulate words. We expect him to articulate spoken words in the next few years and until then he is signing and using an assistive communication device or “talker” similar to a computer tablet.

Leo continues to see Dr. Taylor, a pediatric craniofacial surgeon at Children’s Hospital of Philadelphia. At this time we have no plans for jaw surgery and will likely wait for at least a couple more years. At this point, he’s dislodged his trach tube numerous times but we have become confident at replacing it safely. We know that he can breathe through the hole in his neck (tracheostomy) for a few seconds without the tube, so we have mercifully been able to relax our second-to-second vigilance. However because of his trach, Covid would have serious consequences for Leo so we are eagerly awaiting a vaccine for 2-5 year olds in 2022.

And in the most exciting news, our family has grown! Leo became a big brother when his sister Hazel Marie was born on November 6, 2021. He is adjusting really well and is already helping out with the baby. It’s exciting to imagine their lives together.

Thank you all so much for your support. We’re past the scariest period, making it easier for us to relax and simply enjoy our little boy.