Sebastian's Space

This blog is about our son who has a rare genetic disease called Severe Combined Immunodeficiency (SCID). His form of SCID is linked to a deficiency of the adenosine deaminase (ADA) enzyme. Basically, Sebastian doesn’t have an immune system and is very susceptible to infections that wouldn’t harm healthy children. He is currently participating in a Gene Therapy trial in Italy.

Wednesday, November 05, 2008

Happy To Be Home



It's hard to believe that we've been home for 3 weeks now. We are all happy to be home and we are all adjusting (yet again) to our new routine. Sebastian did well on our flight home. He wore his mask the entire time, only lifting it up briefly when he needed to eat and drink. The flight was full and there were people coughing, so we are thrilled that Sebastian made it home safely and continues to do clinically well.

We were welcomed home to absolutely beautiful weather and got to enjoy a nice walk along the coast and walks and bike rides in our area. Sebastian's been re-connecting with all of his toys. It's like they are all new again. He's also been enjoying visits with his grandparents. He wants all of their attention and doesn't want them to visit with us. We can understand that.

He's already had 2 appointments at UCSF. It's great to see the doctors and nurses who have taken such good care of him over the years. He feels very comfortable there. His numbers are still low and he is still in a vulnerable place, which means we will continue to wait and hope for those numbers to go up. And, of course we'll continue to be germaphobes!

He was so excited to be home for Halloween and he got to go to a few houses for trick-or-treating. At one house, someone was dressed up like a gorilla and Sebastian thought that was the greatest thing. He just laughed and laughed and asked if it was a real gorilla and if he could go back to that house. We're happy that he was able to enjoy himself.

We miss the people we got to know in Italy and hearing their beautiful language. We've found some music videos on YouTube of Italian music that we listened to while we were there, which is something special for us to share together. We also tune in over the internet to listen to Italian radio on the weekends. We will always hold a special place in our hearts for each and every one of the people who took care of Sebastian while we were there.