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.

Sunday, September 21, 2008

No New News


We wish we had some exciting news to report, but not much has changed since our last update. Sebastian had his 90-day post transplant bone marrow aspiration on Sept. 10. He was put to sleep for about 20 minutes, and as usual he was upset when he woke up. Luckily, he didn't get sick and he recovered quickly. Within an hour after he awoke, we were able to leave the hospital. We were glad that he didn't experience any pain, which was evident by his running and jumping all the way to the car. We should learn the results of that test in another week.

His numbers went up a little, but then they went back down again. They'll take blood again next week—we hope that his numbers will be back up. With his numbers so low, we are staying in the apartment a lot more. We take walks now and then, but not as often as before. Plus the weather is changing, and it's getting quite a bit cooler. After being in the "box", it's not so bad having to stay in the apartment. At least Sebastian moves around (a lot). His new thing is skipping, so he skips around between the 2 rooms—our poor downstairs neighbor!

Parents always think their kids say funny things, and we're no different. As this relates to the picture we're posting, I thought I'd share something we found comical. When I asked Sebastian to get dressed so we could take a picture for the blog, he insisted on wearing his Italian soccer jersey, because he said, "I want to look like a perfect Italian man."

We will update the blog again once we have all the results of the marrow test and a clue as to what the next steps will be and when we might be able to go back home.