Not sure what caused that little cluster of seizures last week but it was only for that one day. Over the weekend she was very quiet and low key but had no more seizures.
Monday the augcom people came back. Maria was in a really good mood so they were able to work with her for a long time before she got tired. They started with the VMax and Maria figured it out very quickly. She was looking at it and hitting buttons consistently and generally performed very well. However it’s a complicated device that they obviously didn’t know how to program correctly so it occasionally did things it wasn’t supposed to which confused her.
Then they took out another device, I forget the name, and Maria was completely disinterested. Finally they took out the Tech/Talk and she liked that one too. However they changed the test which, as far as Cathy and I are concerned, invalidates the whole thing. With the VMax she was asking for a toy and with the Tech/Talk she was asking for pudding. They said she responded better to the Tech/Talk while we think she just responded better to pudding as a motivator. Plus they talked about how confused she was by some of the VMax stuff, but that’s their fault for not knowing how to operate it.
Their position was that we go for the Tech/Talk now and Maria can grow into the VMax in three years when she’s entitled to another device. We say give her the VMax now – why buy two devices when the state can buy one? Besides, with the mess the Arizona budget is in, who know if there will even be a program for disabled kids in three years?
We know Maria. The augcom people know the equipment. Wouldn’t it be nice if someone know both? Well her current speech therapist does and she feels after months of working with Maria and extensive experience with the VMax that it would be best for her so we are certainly inclined to agree with her.
Cathy called the VMax manufacturers and they put her onto the local representative who is coming out to the house later today. She is going to work with Maria and the device and see if we can address some of the concerns the augcom provider has about its suitability for Maria. To be fair, the augcom people don’t care which device she gets. They just don’t feel they can justify the cost to the state and we are trying to get more ammunition for them. We don’t expect to have as much trouble as we did with the walker and stander – apparently the state is notorious for denying walkers and standers but not for augcom devices.
Maria’s been acting like she might want to start crawling. She’s gotten up on all fours a couple of times on her own and rocked back and forth. She also is starting to sit on the floor unassisted for a few minutes at a time. She’ll be completely hunched over, but she doesn’t flop over to her side. Still no interest in walking or standing though.
Other than that, things have been pretty routine. Maria has an audiology appointment this afternoon. She hasn’t seen a Phoenix audiologist in a long time so Cathy made this appointment and that’s convenient because the school needs a recent hearing test anyhow. We’ve also been trying to get her in for her annual neurosurgeon appointment but that’s been a bit of a trial since we have to schedule an MRI before the appointment and nobody talks to anybody or listens to messages but I think we got that worked out. She has a swallow study and her kindergarten transition meeting scheduled for March. I think that’s all the appointments in the near future other than the usual crowd of weekly therapies. She has quite the complicated social schedule.
[...] 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 [...]