Live action

I shot this video today so Grace's neurologist could take a look at her twitchiness. I figured I'd post it on here as well. I haven't tried uploading video to her Blog before so this is a good test. The convenience of being able to instantaneously capture activity on video and share it with her doctors and researchers has been a godsend. I primarily use YouTube and send them links to particular videos. So far the videos have been very helpful at following her seizures and diagnosing what type of seizure she is having. If this works well I'll post more in the future.

Otherwise, Grace is doing good. We had Physical Therapy at Kaiser on Monday which went well. The Physical Therapist went over some different range of motion exercises and body positioning. But most importantly we worked on Gracie's oral motor skills, which is a priority for us. Because of the NG tube there's a likelihood Grace will lose the instinct to eat. So we're working with her daily on putting her hands in her mouth as well as her bottle and pacifier.

The lack of her oral drive has become an increasing concern for us. When she was born we were instructed not to use a pacifier with her and to only give her the nipple. In hindsight, we feel we were given some bad information by some of the professionals at Kaiser. And now Gracie is suffering the consequences. So we're now trying to reinitiate the whole suck/swallowing instinct and so far it's been challenging. But we'll continue with it and hopefully over time see some improvement.