Sebastian's Typical Day

Sebastian's doing well and enjoying his time outside of the hospital. He usually wakes early and entertains himself by drawing or coloring. He'll even work on the "fun" pages of his workbooks, like dot-to-dots or mazes. After breakfast he gets to play or watch a movie until lunch. We usually spend about 2 hours on school workbooks and then he can play until dinner. He didn't get to play much with Lego's while he was in the hospital, because it was difficult to keep them clean, but he is making up for lost time and using his imagination to build a lot of different things. He's very creative and visual (like his Dad). Except when we go to the hospital, he rarely plays his video game.

It's hot and humid during the day, so we usually wait until after dinner to take a walk. Sebastian wears a mask whenever he goes outside. He seems to be comfortable wearing his mask and never complains or questions having to wear it. This past week, during one of our walks, we ran into a family from Brazil whose son is also in the study. We met them once last year and it was nice to see them again. Their son is a real cutie. He underwent gene therapy already and they will be heading back home at the end of next week. We wish them the best. After our walk, Sebastian has his shower and then we watch a funny Italian show. It's called La Botola (The Trapdoor) and people do some kind of performance (sing, dance, juggle, etc.) and the audience votes on the best performer. The losers fall through a trapdoor that lands them in a pool. We all get a good laugh from it.

He's still thin, but he'll gain his weight back now that he's eating much better. When we're out for our walks, he runs ahead and isn't having any pain in his legs. I'm surprised that he's bounced back so quickly, especially since we could barely get him to eat or get out of the bed while he was in the hospital. Another nice surprise, after being waited on hand and foot for 53 days, is his enthusiasm in learning to be more independent. Without being asked, he's putting his dirty clothes in his laundry bag, clearing his dishes, and even trying to make his bed. We are proud of him, and even more importantly, he's proud of himself.

Sebastian has to go to the hospital once a week for blood work and a clinical visit. His lesions are practically gone - his ears are taking the longest to heal. We were told that his immune system numbers will go up and down for a period of time, which has been the case. His neutraphil counts were down to 800 two weeks ago and were back up to 1,000 last week. For protection, he takes daily prophylactic medications and has IVIG every 3 weeks (the antibody infusion that he's had to have all of his life). He will continue with these precautions for some time, however, I am thrilled (as is Sebastian) that he no longer needs his Adagen shots. Those were the shots that gave him the ADA gene that he was missing. For 6 years I've given him shots twice a week and it's hard to believe that his body is now producing this on its own!

We will plan to update the blog every two weeks, since there's not much to report on a weekly basis. Our hope is that things will continue to go in the positive direction that they are going now and that we won't have any unexpected surprises ahead. Thanks for keeping Sebastian in your thoughts and prayers and please check back in a couple of weeks.