EEG, MRI, Tube and Speech

Macayla has been turning to the right in a rigid fashion lately where her head is turned as far as it can go and one of her legs will extend and become rigid. Sometimes it would last as long as a minute and we have been concerned that it was a seizure of some sort. We did an hour long EEG in the office and she didn’t perform. Macayla has done this before. We see a strange activity and go in for an EEG to see if it is seizure related, and Macayla will stop doing the very actions that got us there. And then it seems the EEG cures her for a few days after and the frequency of the strange episodes decreases. But now, she’s back at it and we still don’t know what it is. It could just be what her brain is going through at this moment. We will have a MRI in a few days and that may show us where atrophy may have advanced in her brain. We also just had her valve replaced on her feeding tube. It was a very simple procedure. I get the “willies” with the feeding tube thing for some reason. Cleaning around it (especially when a hair gets wrapped around it) just is not my cup of tea. But changing out the valve wasn’t that bad. We also started therapy in Anderson and met a new speech therapist who has opened up a whole new world for us. She has a vast amount of information about augmentative communication devices and ideas. These are devices and techniques that utilize the skills Macayla does have to try and communicate and interact with her environment. We wished we had learned this a year ago. There are devices that can allow Macayla to turn the TV on and off with a button she can manipulate. We are beginning to learn about ways to utilize the motions that Macayla does on her own now to make her world become more interactive. For example, she likes to dangle her feet when she sits in her wheelchair. We can put a switch near her feet that will turn something on (TV, toy, light, fan, etc.) when she dangles her feet. The hope is that she will begin to associate the movement with the result and make the movement more intentional when she wants to communicate. This is important for kids like Macayla who cannot learn new motions as well as before. It’s an amazing area of the speech therapy field to me.