Prayers Answered???

I don't know how it happened, must have been some extra prayers, but Jayen slept through the night. (Hasn't happened in over 3 months) I had to wake him up for school this morning. Kept a pretty close eye on him. I was sure he was going to have a seizure. No seizure but very unsteady on his feet. Kept him home from school. Still waiting to hear from Frost's office.

HELP ME SLEEP!

Called Dr. Frost's office today. We just can't keep doing this. Last night Jayen was up from 2AM to 5AM. Then Brilyn woke up at 5 to eat. Mommy is running on empty, Jayen is running on borrowed time, and daddy is chugging through. Dalan seems to be doing ok, but I worry since they share a room. Jayen often climbs the ladder to climb in Dalan's bed at night so he is woken up multiple times. I think we might have to head up for an overnight in Minnesota again. I am just at such a loss as to what to do. I would love for the Felbatol to be gone. It is not helping seizure control and could possibly be adding to the insomnia. (It is a known side effect of the Felbatol.) We just all need some sleep and SOON!

What is this?

Well we have been doing melatonin and klonopin for 12 nights now and haven't seen a huge success. Things have changed a little. Jayen is doing great at falling asleep with the melatonin so we will keep that going, but he is still waking in the middle of the night. Things aren't as bad as they used to be but I can't really figure out what is better. I think he isn't screaming as much. We are also giving in a little more, since we are all sleep deprived, and letting Jayen sleep with us or one of us sleeping with him. I just don't know what to think these "night frights" are. Are they seizures? Is it something more we need to be concerned with?
When we left Grandma and Grandpa Kuchta's this weekend the kids fell asleep in the car on the way home. An hour into the drive Jayen was screaming and tossing in his carseat. It seemed as though something was hurting him. He was inconsolable. He wouldn't let me hold his had or touch him at all. The screaming lasted for about 4 minutes then he slowly fell back to sleep only for it to happen again 15 minutes later.
I don't know if it would be beneficial to do the EEG again to rule out if these are seizures or what we should do. I just want him to be rested and healthy.

I do it myself!

Mommy taught Jayen how to put his coat on and today he did it ALL BY HIMSELF! He was pushing me away and wanted to do it on his own. I am so proud of him and the look on his face tells he how proud he is of himself! Awesome job Jayen!

Sleepful nights

Talked to Carol, from Dr. Frost's office, today about the Klonopin addition. Last night was interesting. It took Jayen F.O.R.E.V.E.R. to fall asleep (bedtime at 8 but didn't fall asleep until midnight) but then slept through the night. I repeat, he slept through the night!!!! I would have thrown a party, but Brilyn decided it was her night to not sleep so I was still awake most of the night. Carol and I agreed that doing Melatonin to help him fall asleep and Klonopin to keep him asleep will hopefully be a great combination. We will try it this weekend and see how things go. Wish us many sleepful nights!

back on Klonopin

Well sleep has been minimal lately. After trying the melatonin and finding unsuccessful results we all agreed it would would be in Jayen's best interest to start him back on the Klonopin. We will try a whole pill of the Klonopin and no melatonin. I am so disgusted we have to do this, but know that he needs his sleep too. (WE ALL DO!) We will try it and see how it goes.

sleep deprived and frustrated

I think I have been too sleep deprived to update anything lately. Jayen continues to wake up screaming in the middle on the night. We have such a hard time getting him to stay in his bed and go back to sleep after he wakes. I think Matt might have bruises on his legs from me kicking and telling him it is HIS TURN! Said in the most sleep deprived, frustrated voice I have. We are typically awake from 2 AM to at least 4 AM then I think one of us gives in an ends up sleeping in his bed or having him sleep in ours. WE NEED TO GET THIS FIGURED OUT!!! I'm desperate for some good sleep.

Jayen continues to have weekly, if not more frequent, seizures. We started Felbamate January 17th and haven't see any improvement. He had seizures on January 30th, February 2nd, and now today the 5th. I can't remember the last time we had three in one week. I'm slowly loosing hope that we will get these under control again. We have never been this long with seizures. Why can't we stop them? Why can't I give him a normal life?