Meet Lilly! My sweet, little Lilly’s story began three weeks early on June 24, 2016 at only 4lbs 7oz. Spending only a few hours in the NICU and failing her newborn hearing test was only the beginning of our new adventure. At two weeks old Lilly was diagnosed with a VSD, a hole in her heart. She was tiny, but doing well. All we knew was that we had our beautiful, rainbow baby.
At two months old, she was failing to thrive and required a feeding tube. She also had a difficult time swallowing thin liquids. The doctors described it as her body was constantly running a marathon.
At 3 months old, I witnessed her have a seizure on a changing table in Costco. We took her to OHSU and they found that she had a subdural hematoma/hygroma, a mix of fluid and blood in her head. Lilly was continually monitored for her head growth, which was always larger and also developed plagiocephaly, getting a cute, butterfly helmet! It was also around this time that she had tubes placed in her ears. When she was 7 months old she had her first brain surgery to drain the fluid and then again at 8 months old. She started Early Intervention with speech, OT, and PT. She had some delays, but was continually progressing. She was finally able to get her heart surgery on January 5, 2018! A huge turning point for Lilly.
After that things calmed down for a while, Lilly became a big sister. Which prompted us to continue with genetic testing. We had seen Genetics before, but they had told us it was going to cost a lot of money, more money than we could pay and that we probably wouldn’t get any answers. In 2018 on our second go-around, somehow, the lab covered the cost and we got the
diagnosis of Smith-Kingsmore Syndrome. At the time we were given the diagnoses there were very few cases and very little information. After feeling alone for so long, we are so grateful to have found the SKS foundation and facebook group.
Lilly is our happy, sweet little girl. She loves going to school, ballet, Elsa from Frozen, dancing, singing, drawing, and chocolate milk and so much more. She still has her hard days, but one thing she loves to say is “Today is the best day ever!” (And seriously, she says it every day!)
Written by Bobbi, Lilly’s mother
