Maria Rose

Maria had another augcom (augmentative communication device) evaluation Friday. This one went much better then the augcomm evalutation she had two years ago. This was a different organization and they actually *gasp* listened to what we had to say! Rather than trying to shove some bad device on us, they tried to figure out what would be best for Maria.

They agreed the Tech/Talk is a bad device, especially for someone like her. We ended up deciding on the Dynavox Maestro, a device similar to the one we think she should have gotten two years ago, but much smaller and lighter. Not only is it a communication device, but has a web browser so we can use it to read online books they assign her in school, and is a standalone Windows 7 computer which can run any touchscreen-capable software. We are much more excited about this than we ever were about the Tech/Talk.

In less happy news, Maria is in one of her not eating and drinking stages. Plus she resists taking her medicine most days. She’s been badly constipated for a couple of months now, and not drinking just makes that worse. Just this morning I tried water, two kinds of juice, and chocolate milk and after two hours of that she has taken about an ounce of fluid.

She and Cathy went to Special Day for Special Kids, which is put on every year by Raising Special Kids. Maria rode the train and the carousel and had a lot of fun. They couldn’t stay longer because Maria had two therapy appointments, but it’s good to get her out to do a few things.

It’s been a while since we’ve written an update…. Last week there were 2 days in a row that Maria walked in her Miniwalk walker across our yard and to the end of the neighbor’s yard (on the sidewalk)–which is super far compared to what she usually does. Nanny Sue was so excited that when she called me, she was hoarse from yelling so much. At school, Maria’s been in General Ed all morning, which allows her to be outside with her class more often. They’ve told me that since she’s been outside in her walker, she’s been doing a lot more walking.

She’s also been using her communication switches (like the Big Mac switch) appropriately a lot more often; for example, one day at lunch the aide was talking with the nurse and ignoring Maria, so Maria kept hitting the button that said “I want soup” because it was clam chowder with salmon — one of her favorites. She also hits the button a lot when she’s eating ice cream. It just seems that in the past couple of weeks, things have been coming together for her and she’s been more successful at more things.

We got our house modified (thanks to the State). They gave us a portable ramp, which we have in the garage, revised the threshold from the laundry room to the garage, widened Maria’s bedroom door, modified the hinge on the master bedroom door, and the big one–ripped out the tub/shower in the master bath and put in a roll-in shower. We’ve ordered a new shower chair on wheels, so we can put Maria onto it, then roll her into the shower. Between that and the new wheelchair van, we don’t have to lift Maria as much, which is better for our backs, but I think I’ve already hurt mine, since it appears I have a slipped disk….

We’re still trying to figure out why Maria’s optic nerve is sustaining more damage. Our last visit with the eye doc was a little discouraging. I’m having a bit of a communication issue with her docs trying to figure out what’s causing it. She got a one-bang MRI, and now I understand that should’ve been a full brain MRI to be able to get the info needed–so that’s several hundreds of $$ wasted because the type of MRI wasn’t specified….. Argh. Also, the eye doc is recommending a blood test to determine if there’s a metabolic disorder, but the neurologist (who’s supposed to order the test) said it’s probably not that blah blah blah, but I don’t know where that leaves us. I’m glad Maria’s been doing so well because it’d be darn difficult if she was going through medical crap while I am too.