. . . more seizures, but a nice evening . . .

Nenê - Giovanni's nickname
Baby - his sister, Camila Daya's nickname

Today we chose wallpaper for Nenê's room - a wild animal / safari theme. Since we're going to decorate his room, of course we chose wallpaper for Baby's room as well - she chose it herself, actually - a princess, leading a horse, next to a castle.

As we made our way home, we spontaneously decided to have an early dinner at our favorite Italian restaurant, Cantina da Massa. From there, I went directly to the hospital.

Giovanni had several seizures yesterday and today, which is heartbreaking. While I held him, he had a few episodes, but they were so slight that the doctor was unsure whether they even were seizures. His oxygen saturation dropped dramatically, his face got a bit contorted, one eye closed; however, he didn't flail his arms and legs or roll his eyes, he recovered very quickly, and was not tired out or listless afterwards.

He had blood work done, which came back mostly normal. The Depakene dose was increased, which takes time to take effect, and the doctor reintroduced phenobarbital, at least temporarily.

Despite this, it was so nice to hold him this evening. He didn't seem to be in any pain, and he looked at me intently and seemed to like being held, talked to, sung to.

Tomorrow, hopefully, he'll get to briefly see his Aunt Sofia, who's coming down from Salvador for a lightning visit. I wish we could take him to the farm with us and give him a taste of the sun-ripe jaboticaba fruit.

But as a 1p36 mother said on her blog, there's not much use thinking about what could be, what otherwise might be. Or, as a friend whose brother has cystic fibrosis said to me, this is his life, and it's life all the same.