2003-Present

Sam continued into 2003 with no major health issues and excelled in school. He was selected twice as a “SUPER STAR” by his teachers for showing advanced improvement.

In School, Sam has shown that he is very aware of the real world by demonstrating that he knows the day, date and even year. He has shown a real sense of humor by pretending to be Cory for a day. He has been workiong on a computer using a simplified input device consisting on 3 buttons which allow him to make choices. All in all he has exceeded most of the goals set by his teachers. All this without yet aquiring speech.

Sam remains a happy child most of the time. He still has his moments of frustration, but don’t we all?

Ginny with Sam and Cory

In September of 2003, Dr. Carney his new neurologist at Shands was so pleased with his progress and 18 months seizure free, that it was decided to remove him from one of his medications. Depakote is a rough chemical on the system and has been known to cause Liver problems. We started to wean him off the Depakote starting in the middle of Spetember. On November 3rd, one day before he would have been off the med completely he went into seizure. I took over six hours to bring him out of it completely. Ginny thought he felt warm and has the ER nurse take his temp. It was 102.8f. Over the next three days in a hospital stay the doctors tried to get what was obviously a viral infection under control. He also showed signs of mild dehydration. All of this contrubuted to the seizure episode. It was decided to keep him on a lower dose of the Depakote along with his Topamax main medication. He has stayed seizure free, as of March 2004.
BuiltWithNOF

Sam with Grandpa in October 2003

Although Sam still requires a walker or wheelchair to get around, he has been working on his mobility. He can stand well if supported and is trying hard to become vertical. In this photo he stands by himself, leaning on mom.

Sam’s progress continued so well through 2006 that the Neurologist decided to ween him off of one of his medications, Depakote. We took an exceedingly long time to do this, as he has had bad reactions in the past when we’ve switched meds. At the end of April of 2006 he was off the Depakote completely. Ten days later he had a seizure which required a stay of four days in the hospital. He was placed back on the Depakote and has done well since that time.

He continues to do well in school. This year with a new teacher, Robin Garland, who brings out the best in him. We are thrilled with her abilities with the kids in Sam’s class all of whom are around his age and give the impression that dealing with them all day is like herding cats!

Sam’s favorite pastimes are playing in water and music. Here he’s seen at the sink and with his “Blue Man Group” keyboard.

Sam and Corwyn both had a great time at EPCOT in October of 2006

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