update on the boys

So with all the preparations going on for the 5k this weekend I thought I would take a moment, slow myself down and update you on how the boys are doing.   In the middle of March we believed that Brandon was having seizures at school that were very different.  They started out with him falling asleep and when they tried to wake him up or move him he became very agitated and combative.  He also would kick his legs and had twitches and limb jerks and was completely non verbal during this time.    We went to see his pediatric neurologist at Duke and he ordered a 36 hour EEG to see what brain activity was going on……While he was wearing the EEG he had one of these episodes.  We were surprised to learn that there was zero seizure activity going on during this event.  So, the good news was that he wasn’t having any seizures, but the bad news is that he wasn’t having any seizures.  We believe this is subconscious activity but can’t figure out why……. Brandon’s eyesight is almost gone, he runs into things more and more often.  His favorite activities are playing with his Beyblades, playing Pokemon on his Nintendo DS, listening to audiobooks like Percy Jackson or the Bartimeus trilogy and watching cartoons.   He tires easily but still tries to keep up as much as possible.

Jeremy is still a very active boy, he definitely is wound a little tighter than Brandon ever was, it doesn’t take much to frustrate or get him upset sometimes.  His eyes are also deteriorating quickly, he bumped into a door frame the other day and didn’t slow down a lick until it was too late and had a fat lip to show for it.  He has developed a pretty serious stutter that can frustrate him but he seems to do OK with a little help in saying the word he is trying to say, which is counter intuitive to what you are supposed to do with someone who stutters.  Jeremy’s favorite activities are playing Pokemon on his DS, listening to audiobooks and hanging out with his friend Cam.

They both enjoy school and have some great friends and classmates who have supported them.  They enjoy playing VIP soccer with other kids with disabilities on Sunday afternoons in the spring and fall.  Brandon and Jeremy also love to play with our dogs Cubby and Commanche to the point that the dogs just roll their eyes when they see the boys coming, it’s pretty funny.

Overall they are doing as well as  expected at this stage of their disease.

Thank you for all the kind words, support and prayers along this journey.  They give us strength, comfort and joy in our moments of sadness and continue to keep us going from day-to-day and allow us to enjoy our fun times to their fullest.  For this we will always be grateful…..

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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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