Right now, Avonlea's low muscle tone and neurological delays are keeping her from being able crawl, walk, feed orally and speak. She can kind of walk (assisted), but cannot crawl. She was developing speech and saying "mama" and "bah bah" (bottle) before she had her g-tube placed, but since has stopped attempting to communicate verbally. Avonlea's seizure medication has only proven to minimize her seizures, but not eliminate them. Her skipped steps in development, regression and seizures all show that her brain has developed improperly, and that her medical issues and developmental delays will continue this cycle of fueling each other unless we treat the root issue. NeuroDevelopmental therapy targets the problem at it's source. It will be a year or more of daily therapies and exercises that we do with Avonlea, in addition to her weekly physical, occupational and speech therapies.
The cost of NeuroDevelopmental therapy is significant. It's an alternative therapy, not covered by medical insurance. The group that facilitates the therapy, Hope and A Future, only visits this area of the country a couple of times a year. We will need to travel to Raleigh in October for an evaluation, and after that we will do Skype consultations every few months.
If you are able, please come eat at Burger Craft in Fort Mill on Monday, September 26th between 5pm and 9pm! A portion of their profits will be donated to be put towards the cost of Avonlea's NeuroDevelopmental Therapy, and also their food is delicious ;) We will open up a GiveForward campaign after the fundraiser for anyone who wants to contribute, but can't make it to the fundraiser.
We'll see you there!