I just spoke with the people from Sabril and they are shipping the med out today for delivery tomorrow! I am so very excited to begin this! I've been tracking Levi's seizures since yesterday so I can have a good baseline of before and during Sabril. He had a lot of seizures yesterday, but thankfully not quite as many today. Please pray and believe with us that Sabril will stop the seizures quickly and for good, and also that there will be no negative side effects, specifically blindness or loss of peripheral vision. Thank you all for your prayers!!!
Levi had physical therapy today and we spoke a lot about weight bearing so that he can stop wearing the brace except for bedtime. We've asked the ortho doctor to write a prescription for a stander and AFO's. The AFO's are ankle braces that keep the feet flat and support the ankles while standing, and the stander is a device that supports him so he can practice standing and get some healthy weight bearing in his hips. We also went over a couple positions that promote weight bearing for his hips that I can do now. To be honest, I've been a bit hesitant about doing those exercises this week because I didn't know if I had his legs in the right position. So I showed the PT what I was doing and she confirmed that I was doing it correctly. What a relief! The sooner he bears weight on his hips consistently the sooner he can be out of that brace for the majority of the time!
It feels so good to be moving forward in more areas. I feel like the worst is behind us, and we don't have much farther to go to get rid of the seizures and brace. Life is good! Levi has been happy except for the occasional teething pain. The poor baby was drooling nonstop this morning. Hopefully those teeth will begin popping through soon. There's not a spot on his little gums that isn't either a bump or very swollen. All in good time, I guess.
Seizure Diary - Spasms - 64 Individual spasms in 21 Episodes; Ticks - 8