7/26: Changing of the Guard

Today Granpa Leonid came to Houston from Chicago. Anna and Nina need one of us at home and we decided it was best for Marina to go, since schlepping Leo around is very difficult now with the weight gain from decadron. Those are not Leo's normal cheeks (see my first post) in the picture -- they're more like mine :)!

Leo's blood counts came back normal, with the sodium towards the lower end of the scale, probably because the antineoplaston dose is still fairly low, while we jumped on the low sodium bandwagon immediately. So we're just being careful with the sodium without being extreme in either direction.

Leo's mood is better, but not the sleeping. He's been waking up 2-3 times a night, usually just really thirsty -- and we've been waking-up in puddles! The potty training we thought we'd started, with some success, was for naught; he's back in diapers. Although he's clearly very tired towards the evening, he absolutely refuses to nap. His appetite seems to have slowed-down a bit as well. Maybe it's because we're lowering the decadron dosage by 1mg, but he has not had his feasts starting last night. He's been eating more like good ol' Leo (i.e. very poorly). But that isn't really a concern right now since he's gained so much weight. Two other weird decadron side-effects: he craves milk now like never before and has started to grow little tiny baby hair on his legs and back! We're seriously researching non-steroidal anti-inflammatories and going to discuss some options with Dr. Weaver and the nutritionist.

Tomorrow is another blood test and in preparation, in between doses of antineoplastons, we've been heparinizing Leo's port to try and remove whatever clot or goop has collected. A few drops of blood came today so hopefully it'll work tomorrow.