The Ups and Downs

Well, Septmeber and October have held exciting things for Billy Boy.  He is enrolled in home schooling and started out with one teacher, but after she received a full time assignment, he ended up with another.  His old teacher (from when he had leukemia), is his teacher once again.  Mr. White is a great teacher and is trying to stimulate Billy Boy's brain in various ways.  We are really excited about having him.  Unfortunately, the district is telling us this is only temporary until he has an IEP.  We'll see about that!!

At the end of September, we had a scare with Billy Boy.  He started acting funny.. twitchy, uncomfortable, hot, sweaty, didn't want to be touched, couldn't sleep, and couldn't urinate.  He was fine one hour, the next he was acting weird.  I stayed up most of the night with him and in the morning we took him to the pain management specialist to check out his pump.  They interogated it and said all looked fine, which was weird to me because we've never seen him like this.  Again he was up all night, with the same symptoms but they were getting worse, so the next day we took him to the pediatrician.  He ran all kinds of tests on him to make sure there wasn't a bladder or ear infection, perhaps something we couldn't see.  The resident said he was displaying all the classic symptoms of withdrawal, but we hadn't taken him off anything.  We noticed a small seizure in the office, but couldn't be 100% sure if that's what it was. That evening Billy Boy had another seizure, this time I filmed it, it lasted about 15-20 minutes.  I decided to give him Neurontin which brought him some relief.  Next morning we took him back to pain management and showed her the video.  She confirmed the seizure, but didn't know why, that is until they checked to see how much Baclofen was in the pump and it was EMPTY!!!  The poor kid was having Baclofen withdrawls (which can be fatal.)  Now they are keeping their eye on the pump, but we believe it was human error.   It was scary and we don't want to go through anything like that again!!! On a good note, the Orthopedic Surgeon said Billy boy's spinal rod fusion looks great and is out of the danger zone.  We wont have to see him for another six months.

Halloween was fun for us all this year.  We went to a few parties and events so Monet got to dress up several times.  She was a scary clown. Billy Boy and his nurse were ninja turtles.  I got to go with Monet's class to her fireld trip at the San Diego Safari, we had a really good time there too.  Monet and I have been busy at church practicing for the Christmas production.  This year we both have parts as well as singing in the choir. It's hard to believe the holidays are upon us and this year is almost over... where does the time go?