Ophthamologist Appt

Here are a few things from this week... We saw the ophthalmologist on Monday and I think we have some answers on why his eye is dropping so much on the right (which we now know is not a result of fluid pressure, but looks very similar). She thinks he is using vision in both eyes, but not together. He is actually shifting his vision from one to the other… and when he is using the left eye, the right eye floats downward. When he is using the right eye, the left eye is parked at the side (which is why you see so many pictures of him looking to the left). She said he has “gaze palsy” in the left eye and the left is actually the one considered more damaged. This is the one that had the 3rd nerve damage last year after surgery causing his pupil to be hugely dilated all the time and the drooping eyelid. Although his pupil and eyelid are MUCH better than a year ago due to the nerve repairing itself, it is still not back to normal. She sentenced us to patching one eye for four ours a day. Ugh, I was so hoping we could avoid that one. She said if we don’t do it, the brain will give up on the left eye. Basically, as one eye functions, the other one gets lost.

Its interesting though, she only wants us to work on the left eye, and the one to us that appears most normal. Its the right eye floating downward that we see more often, which would indicate to me that it is the weaker eye. Seems opposite to me, but I have to trust the advice of the specialist (we are also considering getting a second opinion). I’m just happy to confirm that he appears to have some level of sight in both eyes, as this has been in question.

So we tried the patch last night with a sample she gave us…it has adhesive all the way around to supposedly keep young kids from pulling it off. Well, it took him exactly two seconds to get it off, little stinker. I was able to get him to wear it for about 10 minutes, only due to working very hard to distract him with songs and games… but every second he had a chance, he’d reach up there and pull it right off... and then hand it to me like a little gentleman, of course! Four hours, huh? I ordered a different box today, hopefully we’ll have better luck with the new ones! We will also have muscle surgery this summer to correct the misalignment on the left, which will correct him parking his eye to the left corner all the time. I don’t like the thought of it, but she assured me its pretty non-invasive and a quick recovery. At least we have a remedy, I’m very grateful for that! I hate not knowing the cause of something -- I don't like ambiguity -- I like answers and to take care of things. I’m glad to know she may be able to help his vision in the long run. We go back in a month for a checkup and will set the date for the surgery.

One VERY cool thing happened at that appointment for me... when I checked in, they asked me the standard questions and handed me the prescription form. Every single Children's visit start with a prescription drug form where we have to fill out the drug, dosage, frequency, and reason. Even if we have three appointments in a day, we have to fill this out three times. Kind of annoying. I've never figured out why they didn't just keep it on file and ask you if there were any changes, like they do with the rest of the information, but whatever. Its just a pain sometimes to fill out with one hand and a squirming baby in the other... and it has been quite lengthy at times. Well.... I got to sign it and check the NO PRESCRIPTIONS box!!! Wahoo! I never thought we'd see the day that he was med-free, but we finally hit it. Last week I ran out of Prevacid (his remaining med) and didn't get it refilled right away, so I thought this may be a good time try to see how he does without it again (4th try). He seems to be fine without it, he's not averting eating like the other times we've tried. What a milestone!!! (*We're still on Periactin to increase appetite two weeks on, two weeks off... but it is an off week now... that still counts as med-free, right? Since that one is voluntary and not mandatory for a medical condition, I don't count it!)

We also removed the "night feeding" two weeks ago, so Bran and I are no longer tiredly waking him up at 11 or 12 at night to get the last few ounces in. Its been so nice. We thought we'd see how he does, its really time to stop having to do that. The true test will be when I get him weighed next week.