March 2016
Sebastian is now 6 1/2 years old. He is happy, funny little guy that is usually always smiling. It’s hard to believe it has been three years since we became a part of the Shannon Daley Family. We are so thankful for this organization. With the help from Shannon Daley Memorial Fund we were able to get the handicap accessibility conversion to our van for Sebastian’s wheelchair. We are a very active family and this has proven to be life changing for us.
I can happily say now that Sebby is in a good place medically. February 2014 he had to have major orthopedic surgery on his hips. Because he never walked, his hip joints did not form properly and developed dysplasia. He was in a lot of pain and could not even sit or get his diaper changed without crying. After the 10 hour surgery and 5 days in the hospital, he came home in a full body cast. The cast was on for 3 grueling weeks. It was quite a long recovery and he missed almost 3 months of school. We both had to take family leave from our jobs to care for him during this time. So again, we have to thank Shannon Daley for allowing us to have the financial peace of mind during this difficult time. 
Sebby healed as expected and even a little ahead of schedule! He had the plates and screws removed Feb 2015 almost 6 months before the Doctor originally told us it would take to heal. This surgery was far less difficult and had a much better recovery time. This past New Year’s Eve, he had his first break through seizure in 4 years. It was very scary at the time and we celebrated the new year in the hospital but thankfully everything was fine. He is growing fast, getting tall and his medication needed to be adjusted to compensate. We have been extremely lucky that Sebastian has been in good health.
He goes to school at Lakeview School in Edison. He has been going there since he was three years old. He graduated from Pre-school in May and is now in the “big boy” class. He loves school and actually really enjoys his 45 minute commute to and from school. He has friends and absolutely adores his teachers, room staff, therapists and nurses. When he is not in school he loves playing with his sister, watching movies (Frozen and Hotel Transylvania are his favorites) and listening to music. He loves going outside and swinging in his swing on our playground and going in the pool. Sebastian has cortical blindness which means he cannot process what he sees all the time so sometimes being in loud areas unsets him. We are learning to deal with it and how to make him more comfortable. Most times if he has his music and headphones on he is good!