Archive for August, 2014

That Damn Optic Nerve

Monday, August 25th, 2014

Or should I say “those damn optic nerves”? We went to Maria’s regular eye doc today and although her cornea looks fine and her vision hasn’t gotten any worse (the prescription for her glasses), her atrophied optic nerve is still / again a little worse. It’s not supposed to get worse or better. If (since) it’s getting worse, there has to be some reason. A couple years ago when it started getting worse and they did a bunch of inconclusive tests, he said it must have just been a fluke. But now, he’s not saying that. He wants her to get an ERG (?). He said it’s like an EEG, except the waves they read are from the eye, not the brain. I’m too _____ to look it up (lazy? tired? afraid? busy?). Maria with shades on

If that test yields some sort of info, then he’ll request that we get some specific blood test. I thought we did the blood test already, but maybe it’s different now that 2 years have passed? Who knows? Anyway, she coughed the entire time we were in the waiting room–which was a long time because they were behind (at 8:30am, really?). So when we left, I called the school nurse and then decided just to keep her home. Where she slept the entire rest of the day. I feel like I’m catching something, so she must have it too. (Sue, too; which is just ab-fab. Everytime I’m not feeling well, she’s not feeling well either, so I don’t get much of a break.) I really should buy stock in kleenex….

Manolis is coming home tomorrow, thank goodness. It’s been a little rough.

Corneal Abrasion

Thursday, August 21st, 2014

School has been going so good. Maria made it all day every day last week, and then this morning, after sleeping on her face all night, she woke up with her left eye a little swollen. She was being a little squinty, so I rinsed her eye in the shower, in case it was an eyelash or something. She seemed to be in a good mood, so I sent her off to school. Within a half hour or so, the school nurse called and said she was crying. She’s never heard her cry, so she was freaked out. I skidaddled to the school, we talked, gave her Tylenol, and it seemed to get worse as we sat there. I took her to the pediatrician’s and saw a nurse practitioner, who put dye in her eye and seemed worried when she saw a spot on her eye. Maria’s usual eye doc’s office was closed, so the pediatrician’s office got us in to see another eye doc a couple hours later. She did NOT seem too concerned. She prescribed ointment and said it should heal in a couple days. So I missed another day of work, but I think Maria’s ok.

Now her wheelchair is another matter. I’m trying to figure out what to do with it. We got it in January this year. We’ve gone down to Tempe at least 4 times for 2 hours each time (plus travel time down there and much longer travel time home) to work with the PT that ordered the chair; a guy who works for the company who provided the chair has come to our house 3 or 4 times; and it’s still nowhere near right for Maria. Now we’re thinking of going with another company to get different cushions, and the arm rests still aren’t right (we’re on the 3rd pair of armrests), and the footrests are too small, and we were recently told she only has a year or two of growth in this new chair, and the laterals aren’t in the right place. I just wish I knew what to do. I think I might write a letter to both companies and maybe the insurance company? Thoughts anyone?

First week of 5th grade

Saturday, August 16th, 2014

Maria’s first week of school went great. She’s more active and animated, so we were right: she was just tired of being around the boring old folks. Cathy figured Maria would be too tired to make it through the whole day, but she hasn’t come home early at all. The tube feeding at school has been fine. We finally realized she doesn’t need to be in the nurse’s office through the whole feed, just to start and stop it, so she can still be with her friends.

She’s scheduled for another swallow study next month. We are hoping she can tolerate at least pudding thickness so we can go back to feeding her purees, at least now and then. She’d still get tube feeding, since it’s unlikely she’ll be cleared for milk even if it’s thickened, but we don’t want her to lose her connection with food completely.

Her wheelchair is STILL being tweaked. I’ve kind of lost track but I guess another guy is coming out Monday. Her stander is fixed though so she can go back into that. That guy said she still has a few inches before she’ll outgrow it but Cathy is going to get started on ordering a new one now since it will take months to get it.

Tube feeding only

Monday, August 4th, 2014

Although Maria was getting most of her nutrition through the g-tube we had been trying to feed her or give her milk now and then. Then Cathy went to the pulmonologist who told her, “Sure you can continue to feed her…if you want her to end up in palliative care.” Um, OK. So she now gets nothing at all by mouth. I honestly don’t know if that means forever (the pulmonologist thinks it should be) or just until she gets over this post-op period.

She’s doing a little better but is still recovering from the surgery. She’s getting only about one does of painkiller and Valium per day but she still sleeps all the time. She’s cranky and doesn’t smile much. She’s not very interested in moving around at all so she mostly just lies there and occasionally plays with toys halfheartedly. It looks like her wheelchair is FINALLY adjusted halfway decently after months and multiple visits to the “expert”, however the PT has said she can’t go in the stander until that gets adjusted. Meanwhile she’s close to outgrowing everything.

School starts soon…next week maybe? I’m hoping part of her funk is just being away from her friends and she’ll perk up once sees them again. We don’t like the idea of tube feeding her in school, since they do that in the nurse’s office and it means she’s away from the other kids during lunch. Obviously her health comes first, but we hate to separate her from her peers any more than necessary.