First Day of School

The first day of school is officially over.  Brandon and Jeremy were both(as usual) very nervous and excited about school for the last week or so.  They did not want to go to sleep, Jeremy would really have trouble sleeping, they were both up early yesterday for the first day.   It didn’t help that Jeremy had two teeth pulled at the dentist the day before.  As usual our school’s did an amazing job working with the boys.  Special thanks to Michelle Moore and Jennifer Cavanaugh the boys’ assistants for taking their usual special care of ourboys!    This morning I visited Jeremy’s classroom to talk to the class about Jeremy’s vision and seizure potential.  We talk about how frustrating it can be sometimes for Jeremy to have difficulty seeing.  I bring in some protective goggles that I have doctored up a bit to resemble what we think Jeremy’s eyesight looks like, here is a short video that I made this morning walking around our home http://youtu.be/xIk2vYy-5LY?hd=1 with the goggles.  We also talk about sensitivity to sounds and the importance for the first few weeks of introducing yourself to Jeremy until he gets to recognize voices.   We also talked this year about the seizures that they may see from time to time, what to do if one happens and to find an adult as quickly as possible.  I am always amazed by the intuitive questions that the kids ask.  This year one girl asked if there was a cure for Batten Disease.  I had to tell her no but that we hoped that the research going on would give is hope soon.  Soon can’t come soon enough.

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About

I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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