My mom spent 37 days in the hospital, and she appears to be in remission! She's continuing maintenance chemo, and she was doing really well until today. Today she has a fever, and we hope it's not an infection. She'll find out more later when she sees the doctor. I feel so blessed that my mom responded so well to treatment. When those words
G has been doing well. His loaner chair is gone, so he's been without wheels. He is supposed to be getting his own wheels, but of course, it's taking forever to be approved and processed.
G is progressing on the bearing weight and taking steps front! He gets onto and off the couch on his own, and he's taken about 2-3 steps alongside the couch. One of his clubfeet is rapidly regressing, though, so we need to address that soon.
We recently saw a neurologist regarding possible seizure activity. We thought maybe shunt in October/November, but the ventricles appeared to be stable. We saw the ophthalmologist in November, and his optic nerve swelling appears to be chronic. I was a bit discouraged about that as I hoped we could use that as an indicator. The neurologist ordered a EEG, so that is our next step. Shunt doesn't appear to be the problem, and I'm not sure if there is any seizure activity going on. Sometimes I worry I'm too paranoid and having him tested too much. Sometimes I worry I'll miss something. I need to stop worrying, don't I?!
Last year, G was doing some serious headbanging. The PT, primary, and neuro NP all thought it was probably behavioral. He was 14 months old, and headbanging isn't unusual at that age. Even I convinced myself it was probably normal. It wasn't. From November to January the poor kid banged his head, banged our heads and noses, trying to relieve some serious pressure. It became more aggressive, and I called about it several times before I was finally listened to that I didn't think it was normal anymore.
I think the fact that G has had unusual presentations of shunt malfunction that only I have picked up on due to their subtlety (and lack of "clinical signs") has put me in a "hyper-aware" mode. Maybe paranoid is a better word for it. Anyway, I feel like I've lost my touch and don't know what's going on. I don't want to subject him to anymore tests, especially CT scans in light of recent studies. I don't want to just let things go on either.
And, toddlerhood. Um yeah. Confuses "normal" a bit. He's two and knows it. :)