Saturday, July 4, 2009

Almost a year!

What a remarkable year it has been. One week from today, Hollis will be 1 year post-hemispherectomy. She has only had 8 seizures (that we have seen) since that time! That was as many as she would have in a day, with meds, a vagus nerve stimulator and other therapies. We have been so fortunate that this surgery has been such a success.

After July 11, 2009, I have decided that I will not update the blog any longer, because it was meant to follow my little girl's journey through the surgery and recovery process. At a full year, the neurologists say that the healing process is complete, and so my journey of documenting all of the anticipation, fear, relief and joy will be complete as well. Thank you for reading it, and I hope that it helps others who are going through similar challenging experiences.

Friday, July 3, 2009

A swing!

Hollis received a swing from the human services organization Fidelity House, to help with some of her sensory needs and to be used as a calming tool. She loves it! Fidelity House is an organization that helps developmentally disabled people better participate in their families and the community by providing consultation, education, and other support. This swing is just one of the many items they can provide: we've been to a behavioral crisis intervention training class, they have had an entire movie theater showing "Up" made available for DD folks and their families (movie theaters are not an easy thing for a kid like Hollis to act appropriate in), and they have other events and classes throughout the year.

We got the swing partially as a result of a sensory integration evaluation that the Department of Mental Retardation conducted a few months ago. Many kids with developmental delays and autism spectrum disorders have behavioral issues that can be related to how they process sensory information. Hollis has always had some sensory integration issues, in which she presents as sensitive to light touch, but prefers stronger "input", and she can be overwhelmed by busy environments with a lot of visual and auditory stimuli. If she gets too much of this stimulation, she can go off on a behavioral bender, sometimes becoming very aggressive, or withdrawn, or conversely, supercharged! Sometimes she seeks out a lot of stimuli, hurling herself against a couch, repetitively, banging her head, or sticking her fingers in her eyes. After the sensory integration assessment, the swing was recommended as one therapeutic method to give her appropriate sensory feedback, and to soothe her before she gets to the point of a behavioral breakdown.