Jake is almost 25.  He was diagnosed when he was 4.  He had an initial surgery to remove the HH.  But at the time it was just a "tumor" and didn't have the HH diagnosis until after the surgery and pathology was done.  Dr. removed a good portion of it, but couldn't get to the rest of it.  It was a completely different world 21 years ago as far as HH was concerned.  Anyway, he continued to have seizures..and as the years went by they evolved from gelastic to generalized and complex partial, and episodes of status.  These were almost daily and it made it hard for me to work.  When he graduated from high school I quit work to be available to take care of him (Idaho has a great program where they pay parents to keep their adult kids home instead of putting them in group homes, etc.) They have never been controlled and have actually gotten more frequent and more intense over the years.  He has a learning disability and had PP when he was 8.  Lupron was just in the study stages, but he was on it.  It helped and he stopped growing when he got to 5'2".  He has never had the rages that seem to be so common.  However, he does have his moments when his temper shows through...but nothing really to be concerned about.  He struggled through the school system with special ed., etc.  Now he attends a facility each day for adults with developmental disabilities.  He enjoys it and the people.  He is a very kind and giving person.  He enjoys participating in Special Olympics (volleyball tomorrow).  We heard about BNI when we saw CJ's Story on TV.  I couldn't believe there were other kids with HH around the country.  That started the ball rolling for us and we pursued the BNI option.  We had to push doctors, but they did refer us and the rest is history.  Dr. Rekate removed the remainder of the HH.  We were so excited...Jake went 9 days after surgery with no seizures...but then they started again.  We have tried to be patient the past 2 years and we can finally say that he is better than before surgery.  Seizures used to be every day...now they are 1-2 times a week.  They are still as intense, just not as often.  We hope his brain is un-learning them.  He is more alert than he ever has been.  He does have short term memory loss, but we don't make a big deal about it.  I just tease him, cause I don't know whose is worse, his or mine.  I was in a group of people a while ago and they were holding a baby...someone said, "I can't tell if that's a laugh or a cry".  I just cringed.  It brought back lots of memories.  Anyway, he is doing better and we continue to pray for more healing in his brain. 

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Here's a picture of Jake at Christmas with his new volleyball and soccer ball.