Ups and downs

We had a pretty good week.  Jeremy was excited to work on his pinewood derby car Thursday night.  Thank you to the Minnick’s for hosting.  Last year I cut out Jeremy’s car by hand with a coping saw since I don’t have a lot of tools etc, took me a couple of weeks.  It’s amazing what the proper equipment will do.  In 1 hour we, cut out some wheel wells, glued these pieces to the main car, cut out the entire block of wood and sanded it.  It is ready for painting, what a difference!  Pictures to come.

We have been adjusting Brandon’s meds, took him off one that was making him sleep at school and added a different one.  Still having to ramp up the dosage on this med, and yesterday he had a seizure at school that was very different from the others he has had.  He got very hot and sweaty they couldn’t get him cooled down, then a short time later he got the chills and they couldn’t get him warmed up.  Then he began to shout out, saying his whole body hurt really bad……This lasted for about 45 minutes.  By the time I got to school he was OK, pale and a little glassy eyed but OK.  The first indication that I had was his hand buried into a bag of goldfish.  After he comes to he is always hungry and thirsty……

All of us are fighting colds, but that hasn’t stopped the boys from getting up to watch their favorite cartoons this morning.  First words out of Jeremy’s mouth this morning:  “It’s Saturday!!!!!!”

Mom took Jeremy to see the Justin Bieber movie this afternoon, more to come….


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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