We went to the eye doctor this week. I suppose it was an ok appointment. He’s still worried about her wandering eyes and if they get worse, then he’ll have to do surgery (he’s been talking about this for a year or so). Good news is he said he could do the surgery at the same time as she has her hip surgery so she wouldn’t have to be put out twice. In addition to the patching, he’s recommending “eye push ups” as he cleverly called them, where we bring objects slowly in toward her face so her eyes have to focus on the object, strengthening the muscles. Does that make sense? She often brings an item so close that it touches her face, so she must know what’s best for herself!
Funny thing is, the second he came into the room and walked up to her, she started “talking” to him — that thing she does where she moves her mouth like she’s talking (although no words come out). It was like she was trying to explain to him what was going on. It was so damn cute!
I think he said her eyes weren’t focused about 1/3 to 1/2 of the time that he observed her, if it goes to more than 50% of the time, that’s when he recommends surgery. Considering the fact that she went to school all day, it was almost 5pm, and she’s been having seizures for the past month — I was somewhat pleased at how pleased he was with her. He, like many of her other docs, said he was amazed at how well she’s doing and he never would have predicted it. What the hell did all these docs think of her and thank goodness they either didn’t say it outloud or I had the sense to block them out.
Now for the technical crap that I didn’t understand and have been too traumatized (or lazy?) to look it up: He thinks her problem might be more oculomotor apraxia (processing?) than cortical visual impairment — although I thought CVI was a processing thing??? He said one thing we could do is hook her up to electrodes and show her visually stimulating objects and record when her brain stops registering. That would give us a number or level of CVI that she has (I think — or maybe the percentage CVI and the percentage apraxia?). He said it probably wouldn’t change what we were doing, but it might be interesting to know. Hmmmm. Uncle Andy is going to have to look into that a bit more. On his notes, he wrote “consider VER (VEP)”; as I recall, that’s what he called the electrode testing thing. Stay tuned for Andy’s update (:-). Other than that, he just suggested we keep patching daily, continue with the glasses, and do some convergence exercises. All-in-all, I guess not such a bad appt.
He had a student doctor in the room (whatever the proper terminology is), and he was the most engaged student doc I’ve met (and we often meet them). Very impressive!! The other impressive thing was that although he was running 45 minutes late and it was the end of the day, he still stayed in the room and answered all my questions and didn’t act like I was putting him out for taking time. I really appreciate that and told him so! He also said it would be a good idea to get glasses with transition lenses (change to sunglasses in the sun). I forgot with her new glasses. I’m not so crazy about her new glasses, so I’ll probably get another pair. Her disability insurance pays for 1 pair per year, but only at Nationwide Vision or something like that, so I’ll go check them out and if they have any decent ones we’ll do that, otherwise, we’ll get the cute ones at the eye doc.
So yesterday pretty much sucked — I worked on a file for work all morning and my computer locked up and the file was lost (with the help of the BLM Help Desk, thank you very much). It was a project I didn’t really have time to do but I was doing it as a favor to someone (who I’ve never met — that’s the kind of public servant I am…). Then my toilet broke. The pond pump broke. My new phone broke. No kidding — this is all on Tuesday within about a 3-hour span. While I was on the phone with T-Mobile to see what they were going to do about my phone, she said she’d send me a battery and see if that worked. I told her I needed it Fed Exed to me because I have a 5-year old daughter who has seizures and I need to be able to have the school get in touch at a moment’s notice, and no shit, the second I hung up the phone, the phone rang and it was the nurse calling to tell me Maria had about 6 seizures so she was giving her a Clonazapam and could I come get her. So, I picked her up, she had a wicked seizure in the car as I pulled into the garage, then I complained mightily about how everything sucks for 2 1/2 hours, and then worked until late to finish the paper I’d begun that morning, getting me no closer to catching up to the huge pile of work that’s growing.
But today was a better day. Maria only had a few small seizures and was in a good mood. Manolis fixed the toilet and tried to fix the pond pump (but the cord is too short so he has to go back and get the one with the other cord), and I’m using my old cell phone, so I don’t have to be irritated by the stupid touch screen of the T-Mobile Tap — which I highly DO NOT recommend because it’s a piece of crap. And tomorrow, on April Fool’s Day, I get to go see if a physical therapist can help my little pelvic pain problem. oh boy.