Box Life

The first week in the box was very difficult. Thankfully, this second week has been much better. Now that Sebastian's off of the medication that gave him mood swings, and we have a bit of a routine, we are all adjusting to our temporary new way of life.

A typical day goes something like this:

It starts with my drive to the hospital. It's only about a 10 minute drive, with no stop signs or lights. Instead there are 8 round-abouts; these are common through-out Europe and possibly other parts of the world—they are not common in California. There's only one that's very busy, with 4 or 5 different intersecting roads and heavy morning traffic. I'm sometimes amazed that I make it here in one piece! Chris thinks they are very smart and wishes America would adopt this system because you never are waiting at a stop light. He loves driving in Italy and I am getting along just fine.

I arrive around 8:30 a.m. and Chris tells me how their night went. I change my shoes, put on my hair net and get my mask ready. The nurse brings in meds and takes vitals and I get Sebastian's breakfast ready. Food is a whole other matter, which I will talk about later. Everyday someone comes to clean Sebastian's room. He sits in the bed, while everything inside the box gets cleaned. When it's all done, we put his shoes on and he stands near the wall of clean air flow and waits for his bed to get cleaned and his sheets changed.

Bath-time follows, so that he doesn't go into his clean bed until he's been cleaned too. The nurse brings in warm, sterile water and I get everything prepared to enter the box (my gloves, his clothes and towel, and the wash cloths with soap in them). It's probably a good time to mention that last Sunday, I watched as a nurse shaved each beautiful lock of Sebastian's hair. We hadn't been able to wash his hair, because they didn't want him to have wet hair and he had too much for it to dry quickly. We all agreed that for hygiene reasons, it would be best to shave it. He wondered if he still looked like himself and he does. We are all used to his new look and actually like it. Chris tells him that he could use a bit of sun though.

One of the handful of pediatric doctors visits him each day to keep track of his condition and I'm pleased to announce that he's clinically doing well. Other than the nurses coming in to give meds and take vitals, we have the day to ourselves. I thought this was going to be a great bonding time for the two of us, but in reality, he wants to do his own thing - play his video game, watch a movie, color, etc. When he is out of the box school work will continue.

On Friday Dr. Aiuti came by with an update on some of Sebastian's blood work, which seems to be fine and in order for this stage of the procedure. He had a package from his daughters, a bunch of small cars, which Sebastian was very excited about — Grazie! We were able to meet his family very briefly in California when they were on holiday last summer and they are very, very nice. It would be great to see them again after things calm down a bit.

The food is pretty good, and we're getting Sebastian to eat, but it can be a struggle at times. There are limited choices for a picky eater (this would be the case at any hospital). Understandably, he cannot eat any fresh foods, everything needs to be well cooked for germ safety. He either eats rice and oil or pasta and oil and a bit of the vegetables. I've tried different things and discovered that he does like one of the cheeses he can have and will eat it on a roll. I just hope that he doesn't get bored with the same food.

Everyone here at the hospital has been very helpful and the care has been excellent. Our Italian vocabulary is growing daily and to fill in the blanks we have a dictionary to help us communicate with the nurses, although many of them speak English. They are also very helpful at teaching us words in Italian and in return we teach them words in English. This exchange is great and helpful to all.

At this point we are most grateful for the fact that Sebastian has not asked to come out of the box. As a matter of fact, he refers to this room as the hotel. We are very proud of him and tell him so all the time. He understands that this is what is keeping him healthy at this point.

I hope this paints a bit of a picture of what life has been like lately. Maybe this will explain to other families seeking gene therapy what goes on day to day at this stage, as well as letting our friends, families and the curious know what we're up to. Have a great week!