Maria Rose

The gang is back from vacation and had fun. Maria liked swimming in the ocean and playing in the sand. She has a fair amount of color in her cheeks. She didn’t eat or drink as much as she should have. Cathy said it was surprisingly hard to find milk or vegetables in Hawaii. Maria’s eyes are still a little swollen, but the eye doctor said that was normal even this long after the surgery. He still wants Maria in glasses and she goes back to him right before Thanksgiving so might get them then.

Monday Maria has a barium swallow and an appointment with the audiologist, possibly for new hearing aid molds. After that I believe her schedule slows down for a while.

Just a quickie update. As most of you know, Cathy, Manolis and Maria are in Hawaii at the moment. They were on their cruise and I guess they docked a few hours after the earthquake so they missed the fun. They were going to Honolulu today and had heard the power was out so they are curious how much of a mess it will be. I’m sure the geologist in Cathy wishes she’d been there.

Cathy says Maria’s new favorite food is corn on the cob, which she can eat by herself.

I got the word from Cathy that Maria’s surgery went pretty quickly. Maria was sleeping when Cathy called and I’m hoping she just slept most of the day away, since the longer Cathy can keep her eyes patched the better she’ll heal.

The doctor said that the oil in the other, non-inflamed glands was still thicker than normal so she is likely to have recurring bouts of chalazion for her whole life. We just have to be aggressive the instant a new one shows up to use the compresses so she doesn’t have to go through this again.

He also took the opportunity to give her eyes a better exam since she was under anesthesia. He said that the interior of her optic nerve just isn’t there; the nerve is hollow. It may be that it never formed right, it may be that it was damaged (probably by the hydrocephalus). He suspects it’s probably both. It’s not degenerative, so it won’t get worse. As her development continues her brain will compensate for the damage, though we don’t know how much.

He also evaluated her for glasses. He said she was definitely very nearsighted, and said her vision was 4 (we’re assuming that’s diopters). I found a website that says that’s equivalent to 20/400 vision which is quite severe for her age and it will likely get worse as she gets older. It may even get bad enough that they can’t correct it to normal vision. However he said he doesn’t want to put her in glasses yet, that we’ll wait another couple of visits before he does that. I’m not sure why, unless he just wants to re-evaluate her after she’s fully recovered from the surgery or something. After all glasses would go so nicely with her hearing aids, AFOs, and shunt. She’ll be more machine than human soon

Friday Maria got her ankle-foot orthothics (AFOs), and I hate to say this, but they’re awfully cute. Blue plastic with butterflies, and pink straps. We got her some pink sandals and cute socks and she looks stylin’. I think she likes them, she’s been playing with them and it seems like they might help her be more aware of where her feet/legs are. They want us to keep them on when she’s in her stander, no problem, and work up to keeping them on all night–that will be interesting.

Today we started our day at the eye doc for our pre-operation appointment (actually we started much earlier with a walk. I put Maria to bed late and got her up early so she’d be nice and tired for her EEG). He’s going to look at her optic nerve and her prescription to see if she needs glasses while she’s under. He gave us a nice note to take on vacation that says, “Maria’s bruised eyes are from eye surgery. Her family takes fantastic care of her!” Ha! Take that! I will say if anyone looks at us askance because of her post-op black eyes.

And then we scampered on to the EEG, where Maria performed admirably–she fell asleep about a minute after she was wired up and the lights went down. The neurologist left a message that said Maria’s EEG is abnormal and she wants more detail on the “episode” Maria had a couple weeks ago, prompting the EEG. Andy reminded me that her past EEGs were also abnormal. (I remember them saying there was potential for seizures, but abnormal, hmph!)