Hello everybody, just wanted to let everybody know that there hasn't been much change over the last few days. He is doing really well, but still having a few clusters of seizures from time to time. We did get news yesterday that there is a way for us to get the vigabatrin without having to wait three weeks for it to get here. Its costing us more to get it this way, but its worth it if it will stop his seizures.
Sleep is still kinda off and on, and hes sleeping a couple of hours at a time each night. We think that going up in doses on his Keppra, and going down in doses on his ACTH injections are playing a role with his sleep. I think that once we get to a certain level on the amount of drugs in his system, and stay there, then he will be able to sleep better. Even though he is not getting a lot of sleep, he is always in a great mood. He wakes with a smile on his face and then plays with his toys until time for another nap.
Developmentally.... He is doing everything that he should be doing with the exception of rolling from his stomach to his back. We are putting him on his stomach more to develop that muscle group and hopefully he will be able to start rolling over soon. I think his size ( 21 lbs now !!!) hinders him a little with rolling as well.
Thank you for checking in, and praying for him. We love you
Jeff and Allison
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