Maria Rose

So miuch going on, I don’t seem to update the blog as much. We got Maria’s Dynavox Maestro last week. It’s pretty cool. A little heavy, so we’re going to have to mount it. We ordered a mount, but I haven’t heard anything. I thought it would come before the device did. The device is a computer-like thing with a touch screen. We just have to learn how to program it. I need to call the company to schedule training and figure out how to train us and the home speech therapist and the school therapists and special ed teacher and her aids…..hmmmmm.

Maria’s done with 1st grade now! I went to her party for a few minutes on Thursday (I had a conference call I had to get to, which turned out to be a waste of time, dang it). The kids in her class were all signing each other’s shirts — it was so cute! They also did a Clap Out or Clap Off, where all the kids go out in the hall and clap and the 6th graders walk through the halls and high-five every one. It was so cute and sweet and sad. If I thought moving from preschool to elementary was hard…elementary to junior high will be traumatic!! (for me more than Maria!)

We missed Maria’s party in the Special Ed room because Maria was having more tests for her optic nerve. She had a Electroretinography (tests how the retina works with light) and a visual evoked response (aka visual evoked potential), which is like the BAER sedated hearing tests she used to get. Both record responses to stimuli from the central nervous system (e.g. brain stem, cerebral cortex), so it’s to see how what she sees is being transmitted (translated?) to the brain. That was Monday, haven’t heard the results yet.

Friday I made my weekly call to the neurosurgeon’s office. Last week I talked to his admin assistant who said she’d never gotten any messages about Maria, to which I said, “That’s not true! I’ve left you messages before.” I’ve talked to her, I talked to some other lady there, at least twice. This one tried to tell me I called the wrong number. Ha – then how was I talking to her?! It’s been about 4 or 5 months since this optic nerve issue began (the worsening of it), and I haven’t spoken to him once…I take that back, she got a 1-bang MRI way back then and he said it was fine.

Someone enrolled Maria in CRS (Children Rehabilitative Service), which is another insurance, I think. And we got a card with an appt with her neurosurgeon through that, sometime in June. I guess that’s what we’ll have to wait for, while her optic nerve gets paler and paler…

Anyway, I can’t believe Maria’s done with 1st grade. Her teacher was AWESOME! She’s going to be in there again because it’s a 1st/2nd classroom and the teacher has ordered tables because it will give Maria more room to maneuver and they can store some of her stuff–maybe her walker? in the classroom. The teacher has used desks for 20-some years and next year she’s getting tables. To help Maria. I know there will be benefits to the other kids too, but to do it initially for Maria just makes me want to cry or jump and shout–or maybe all 3?

2 weeks until summer school. Maria was accepted to Extended School Year. Gulp! Different school. Different teachers. Different aide. Starts earlier and is farther away. It’s 3 hrs/day M-Th for 4 wks. She’ll miss the last day or 2 because that’s when she’s having hip surgery. Big Gulp.

Maria’s sedated brain MRI was scheduled for June 6, but they had a cancellation this week so we took it. Fortunately, they called me one more time the evening before the procedure and mentioned which hospital it was scheduled in–which is a good thing, because we would have been at the other hospital at 7am!!

Neurologist called with the results. He said there were no unexpected patterns, signals, or findings. Maria has less white matter than others, but we knew that. The white matter present has no disease, irritation, or infection. That means she doesn’t have MS (whew! glad I didn’t know that was a possibility!) The ventricles look ok. I wrote down “with high pressure, you can see edema, but that’s the neurosurgeon’s area”. I don’t know if he saw edema or if he meant if there was high pressure in the brain (which is what would cause the optic atrophy getting worse), then there would be edema and there was no edema, so he thinks there’s no high pressure?? I’m not sure what he meant.

He did see some fluid in the left mastoid, which is near the sinus-like cavity below the left ear. It doesn’t mean it’s an active infection, but it doesn’t mean it’s not. He wants me to call Maria’s pediatrician. I told him Maria had a hearing test at the school several weeks ago and one of her ears showed high pressure, like infection, but I couldn’t remember which ear. When I went back to check her report, it was the left ear back then too…..that worries me a bit (esp since I’m leaving town soon). I’m going to try and get her in before I leave.

Neurologist said he’d email the neurosurgeon to tell him his findings and let him decide if it’s worth the risk to stick a needle in Maria’s head. I think he sees nothing to indicate high pressure in the brain. Then he called me back and asked if the eye doc had ever done a visual evoked response (VER) or an electroretinogram (ERG). I said I wasn’t sure. He said, you’d know it if he did, you have to stick electrodes on the head to do it. He said kids with CVI (cortical visual impairment) may or may not have the visual evoked response present, but the ERG should be there regardless of CVI. So that will give us 2 more pieces of info. Then it goes back to the eye doc’s court because it is an eye problem. Hmmmmm.

Even though I’ve called the neurosurgeon several times, I haven’t gotten a call-back. I’m hoping an email from the neurologist will get a rise out of him (of course I thought the “Maria’s shunt may need to be re-set since she had a sedated MRI” would get him, but that was Thursday and this is Sunday, so I guess not.)

On the bright side, Maria has been so smiley and sweet lately. She’s back to eating well almost every meal, and her drinking has improved, although not where I’d like it to be, but it’s better than it was!