As I previously posted, Levi had to go back up on Phenobarbital because the seizures have been worse, and also because we have to wean Topamax since it can increase the risk of certain side effects when combined with the ketogenic diet. I was sad to increase Phenobarb. Levi had become so much more awake and alert, was kicking his legs, and smiling...I didn't want him to lose that! As it turns out, the Phenobarb increase has done nothing but help the seizures slightly. He was having up to and even over 100 a day, and now the range is around 55-80.
Surprise, surprise! The decrease in Topamax has had tremendous results in the area of alertness! Levi continues to smile and kick his legs, thank God! He enjoys laying under the gym and looking at all the toys, which he seems to be seeing more clearly. We keep the toys hanging low so that when he happens to move his arms he will feel them. Before this week he has never had any interest in touching them, but now he moves his arms more, and hits the toys, albeit accidentally. Even more exciting, he has been lifting his right hand up to feel the little elephant, over and over again, sometimes leaving his hand against it. This is HUGE! My mom has been kissing his little cheeks since the day he was born. Now when she asks for a kiss, HE OPENS HIS MOUTH! He understands what she says!! It's too cute, he looks like a little fish. He's been giving kisses to all of us, and to his therapists Shawnery and Mary. He doesn't wait to be asked, he instigates it himself now :)
I could go on and on about how exciting it is to see these new developments. We start the ketogenic diet a week from tomorrow, and we are praying that Levi continues to gain ground developmentally, by leaps and bounds! One day Levi will be seizure free, med free, and delay free. From our lips to God's ears! I just have to thank Him for giving us the precious gift that is Levi. Every day is a blessing!
Here's the video of Levi touching the elephant.
http://www.youtube.com/watch?v=Hm4yfZT_B78
Surprise, surprise! The decrease in Topamax has had tremendous results in the area of alertness! Levi continues to smile and kick his legs, thank God! He enjoys laying under the gym and looking at all the toys, which he seems to be seeing more clearly. We keep the toys hanging low so that when he happens to move his arms he will feel them. Before this week he has never had any interest in touching them, but now he moves his arms more, and hits the toys, albeit accidentally. Even more exciting, he has been lifting his right hand up to feel the little elephant, over and over again, sometimes leaving his hand against it. This is HUGE! My mom has been kissing his little cheeks since the day he was born. Now when she asks for a kiss, HE OPENS HIS MOUTH! He understands what she says!! It's too cute, he looks like a little fish. He's been giving kisses to all of us, and to his therapists Shawnery and Mary. He doesn't wait to be asked, he instigates it himself now :)
I could go on and on about how exciting it is to see these new developments. We start the ketogenic diet a week from tomorrow, and we are praying that Levi continues to gain ground developmentally, by leaps and bounds! One day Levi will be seizure free, med free, and delay free. From our lips to God's ears! I just have to thank Him for giving us the precious gift that is Levi. Every day is a blessing!
Here's the video of Levi touching the elephant.
http://www.youtube.com/watch?v=Hm4yfZT_B78
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