Baby Silas Update Blog Extravaganza (and Menagerie)
Sunday, July 3, 2011
SBA Conference 2011
This week we brought Silas to his first Spina Bifida Association annual meeting. It moves around to different parts of the country each year, but this year it was in Southern California for the first time since the 1980s. And, to top things off, it was held at the Disneyland Hotel, so we couldn't miss it.
We had a great time with Silas's uncle, Jason, and lots of new friends. Much of the conference is medical in nature, with academic presentations on various aspects of spina bifida, but a lot of it is just plain fun. The kids had a visit from the Anaheim Fire Department and some even got to spray the fire hose.
We got to meet some celebrity guests like Goofy (who Silas thought was pretty scary).
Silas got to do lots of swimming.
And he even got to drive his own car!
Silas also got to meet Dr. Warf, his neurosurgeon from Children's Hospital Boston who closed his back and gave him his ETV back in October 2009. Dr. Warf was one of the featured speakers, so it was fun to be reunited with him nearly two years later.
On Sunday, Grandma came down and joined us and we all went to Disneyland. In the evenings during the conference we also got to spend some time in Downtown Disney and watch the fireworks each night.
The best part was meeting lots of new friends.
Silas can't wait to get together with Annabelle and his new friends again soon!
Baby Silas was born on Oct. 27, 2009 (7 lbs, 9 oz, 20.5 inches) at Yale-New Haven Hospital. He is the love of our lives. Silas has a neural tube defect called "spina bifida" -- a non-lethal birth defect that involves an opening in the spine where the neural tube fails to close completely in the first month of pregnancy. Spina bifida is usually accompanied by some degree of paralysis and hydrocephalus (a swelling of cerebral-spinal fluid in the brain). His condition was discovered during a routine 18-week ultrasound back in June in San Luis Obispo. In October, he surprised us by being born 3 weeks early. He has had five surgeries (one to close his back, two for the hydrocephalus, a Chiari decompression and a tracheostomy) at Children's Hospital Boston and UCSF, and today he is doing wonderfully -- moving his hips, knees, ankles & toes and beating all the odds.