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Tuesday, July 5, 2011

So Sweet

Well I never did actually count his seizures, but I think they are about the same.  He does seem to have less episodes, but the number of clusters within an episode are sometimes more than before.  I talked to our regular neurologist today and she gave me her email...hurray!...so we won't keep playing phone tag all the time.  This is great because I need to be in contact with her a couple times a week.  We decided to go up to 2 mls of Keppra.    Although Keppra didn't take away the spasm seizures before, we are hoping that the increased dose, in conjunction with Topamax, will make a difference.  If not, our next step will be Sabril, a medication that has been recently approved in the US, but has been used for many years in Europe and Canada.

The OT came out today, and even though Levi had a good nap before she came, he slept through half the session.  She was able to work with him on sitting up (now that he's out of that cast! yay!), a little bit of weight bearing, body recognition, stretching, etc.  He wasn't too happy about it, and was comforted in Moga's arms where he fell asleep.  We made the follow up appointment for Levi's hip for the 15th of this month.  I'm hoping that the doctor will decide we can keep his brace off except for naps and bedtime.  He's supposed to wear the brace 23 hours a day for 6 weeks, but his hip healed so well in the cast, my hope is that he will continue to move along more quickly than expected.  It's such a joy to hold him without a cast/brace even for such a short period of time right now, I can't wait for it to be gone for good!

He's been so very sweet and good lately!  I think we've finally got all his issues under control except those darn seizures.  Most of the time he's content to be held, or hang out in his crib or beanbag, or whatever else we want to do.  Tonight we went with my mom to a quarter auction.  It was my first one and very much fun!  Levi was so wonderful!  He sat in Moga's lap and cuddled with her and smiled at her.  It's such a far cry from before when he used to scream all the time that I just find myself thanking God over and over again.  I'm so glad those days are over!  He's such a joy these days, and he seems to be making progress again.  I'm believing pretty soon he will start learning and developing at a quick rate and make up for lost time.  He's such a smart little guy!  Well, that's all I know for now.  Will keep you posted :)

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