Healthy Progress

August is the time of year that most Italians take their vacations, and a good percentage head toward the sea or lakes where it is cooler. Many of the shops in town close for the entire month. The supermarkets are still open and there are still people about, but the change is definitely noticeable. Even the hotel near the hospital, where we go to update the blog, is closed. Unimaginable for our North American brains—but very cool.

Last week we had to move to a different apartment. We actually moved back into the same apartment that we stayed in last year. It took us a couple of days to get situated here, but we are settled in now. The two apartments are basically the same, but one good thing about this one is that there are screens on the windows, so we can get some fresh air without worrying about mosquitos. The view faces another direction and Sebastian does miss watching the construction of the building across the street, but he can still see it when we go outside for a walk.

His numbers are continuing to go up, with the exception of his lymphocytes, which we know will take a long time to increase. We are very happy with how well he is responding to the gene therapy treatment up to this point. The lesions that he had in the hospital have more or less disappeared, however, we believe that he was bit by some sort of insect (maybe a spider) and he had another reaction on his face. The doctors gave us some cream to put on, and it seems to be helping. We still don't take him to parks or into stores, but he no longer needs to wear a mask when we go out, except when we go to the hospital.

In the picture, Sebastian is holding an Italian flag that he made out of Lego's. He's standing in front of one of the windows in our apartment. All of the windows have outside window coverings that can be raised up completely, closed partially to let some light through (as shown in the picture) or closed completely to block out all light. It seems that every home has these window coverings, or some version of window coverings. We think they are for temperature control, privacy, and safety. We prefer to keep them open during the day, so that we can look outside and get some natural light, however, most of our neighbors keep them closed the majority of the time.

Sebastian is enjoying doing his school workbooks. Lately, after we wake up, he has a few lessons prepared for us. These are similar to what he has learned in the previous few days. He says, "I have a game for you to play." Then he gets out a pen for each of us and tells us what we need to do and how it should be done. He often changes the rules of the "game" mid-way and makes sure to correct us all the time. Basically, this is his opportunity to tell us what to do and to be the boss. We think it's really cute. With all the rules Sebastian has had to live by we believe this is very healthy for him. On that note, when we go out for a walk he always says, "Can we go where I want to go?" Of course.

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.