Gastro & Neuro Updates

Yesterday we went to the gastroenterologist. He was very pleased that Maria's drinking her bottle again. He doesn't really believe it, though, because it's VERY unusual for a baby to start drinking from a bottle when she quits and has an NG tube. In fact, he's so shocked that we have to go get another barium swallow to make sure she's not aspirating -- he feels something has to be going wrong, she can't just be drinking again like a normal baby. In fact, he used the word "miracle" (kind of like the "miracle" of the mass in the Aqueduct of Sylvius in Maria's brain that mysteriously disappeared in December). The docs just don't quite know how to figure little Miss Maria out... He did say, however, if she stops drinking the bottle again and won't take enough liquid from a cup or if she's aspirating all thicknesses of liquid, then she still has to get the G tube in her stomach. Mom says, "yea, whatever."

Today we went to the neurologist. She's so nice and yet so not positive. She thinks Maria won't have vision. Maybe shadows or something similar, but she feels like she'll pretty much be without sight. Although she hadn't ever or recently seen the March MRI, she doesn't think the brain grew back in the back (occipital?) lobes. Of course I forgot the CDs with the scans on them, so she couldn't look at them today. Maria is getting a CT scan, MRI, and ABR (hearing) test in mid-August. The neurologist said sometime after that, we'll look at that scan, and compare it to the ones done in March, January, and December (when the mass disappeared). We'll discuss the differences, talk about anatomy, see how the brain is "fluffing up" as they say, and talk about what that means. She says vision and perhaps something to do with hearing is controlled by the brain in the back of the head.

She thought Maria's arms were a bit stiff, but thought her legs were ok (last time she said her legs were stiff). Said she's too chubby (22 lb). Said to keep doing what we're doing. You never know. It's good to have hope, but don't be too deeply in denial. Blah blah blah. As I said, she's so nice, but I left her office pretty upset. Thank goodness her therapists are so positive and encouraging.

Manolis is getting quite an education about Maria's life. He just adores her, of course. She's getting used to him, smiles when he picks her up and kisses her, but still can't understand him (because he talks to her in Greek). As he sees what my days are like, and how much time it takes to raise a baby, he's beginning to understand why I haven't learned Greek yet. And even though it's been record temperatures (115 degrees some days), he works in the yard for at least 5 hours a day trying to whip my yard into shape. Keeps asking if he can get rid of my Texas sage bush. I just say ha! Tomorrow he comes with us to speech (feeding) therapy and Friday it's occupational therapy. Never a dull moment!!