Yoshie and Maya are in Japan this week, so John and I have been having fun playing with our Christmas toys.
We even got a little snow on Christmas day, which John loved. I hope it snows again soon!
John's seizures are slowly but surely getting worse. He has at least one cluster every day, with the seizures getting a little stronger. He sometimes laughs after the seizures. I guess they feel funny. We raised his Felbatol last week, and that clearly didn't help. So, we'll begin lowering that again soon unless the seizures disappear. I'm sure that John will get his VNS replaced in the next few months.
Friday, December 28, 2007
Wednesday, December 19, 2007
seizures return
John has started having seizures pretty much every day now. They are still really small, but come in clusters again. We can only assume that this is due to the VNS battery running out. So, we'll probably have to get the battery replaced sooner than later.
In the meantime, since it is getting worse, we felt we had to do something so we have added back a little of his Felbatol that we recently removed. If this doesn't stop the seizures, then we know the Felbatol wasn't the key and we will start removing it again.
Outside of that, everything is going well. John still seems to enjoy school. He started shaking his head for "No", which is something they must have taught him in school.
We have still been having some in-home speech therapy, which has been great. And, we finally got John in to the speech therapy at the local university. He'll be going twice a week (after school) for the winter term.
We made yet another trip to the urgent care clinic last Friday, after John got his feet tangled in Christmas lights and fell head first on to the piano (we think, as we didn't actually see it). He cut his head, and it was bleeding like crazy. We had no idea how bad it was, but by the amount of blood that came out I assumed it was bad. But, after they cleaned it up, it was just a little over a centimeter long and didn't even require stitches. I guess head wounds just bleed a lot.
And we actually got accepted for a grant to install a video camera in his room so that he can sleep and we can monitor him and record any activity. We'll try to get that installed shortly.
Yoshie and Maya are off to Japan next week, and I have the whole week off work to take care of John. Should be fun!
In the meantime, since it is getting worse, we felt we had to do something so we have added back a little of his Felbatol that we recently removed. If this doesn't stop the seizures, then we know the Felbatol wasn't the key and we will start removing it again.
Outside of that, everything is going well. John still seems to enjoy school. He started shaking his head for "No", which is something they must have taught him in school.
We have still been having some in-home speech therapy, which has been great. And, we finally got John in to the speech therapy at the local university. He'll be going twice a week (after school) for the winter term.
We made yet another trip to the urgent care clinic last Friday, after John got his feet tangled in Christmas lights and fell head first on to the piano (we think, as we didn't actually see it). He cut his head, and it was bleeding like crazy. We had no idea how bad it was, but by the amount of blood that came out I assumed it was bad. But, after they cleaned it up, it was just a little over a centimeter long and didn't even require stitches. I guess head wounds just bleed a lot.
And we actually got accepted for a grant to install a video camera in his room so that he can sleep and we can monitor him and record any activity. We'll try to get that installed shortly.
Yoshie and Maya are off to Japan next week, and I have the whole week off work to take care of John. Should be fun!