Seizure Update, St Louis appt

Here's the St Louis appt update, ya know the one I should have posted last week. The news just sucks, so I'm avoiding it. How you can avoid it is beyond me, but I'm working on it anyway.

* Neuro is still NOT convinved Logen has CP. {Yea, me neither. How many other almost 5 y/o kids with CP walk, but can'talk. Not a single word, just ahh noises. Not for lack of trying though}
* His seizures pose a FATAL risk. Yes, I said FATAL. They occur on both sides of his brain. If left untreated and he were to have a lengthy seizure (we are talking 5 minutes= lengthy) If he has a lengthy seizure- this can cause chemical toxins to be emitted into the blood and pose a fatal risk. We are to call 911 immediately following a long seizure. We were instructed not to attempt making it to the hospital. It can take up to 15 minutes for us to the nearst one, and apparently that is to long of a wait for him.
* We left with 4 new prescriptions. FOUR. Not one, but 4.
* He *might* have reflux, so we are trying prevacid. I think this will get us no where. I am almost sure it won't. And his SLP pretty much agrees. He drools b/c he can't work his lips. He just can't do 'lip closure'. He doesn't control the drool. It just spills on it in buckets. He aspirates. How can you talk when you can't even swallow without keeping liquids out of your lungs.
* His med's (and those of you with kids on seizure meds, please comment or email about them!) are:
1) Zonegran- 2x a day. We mix it in applesauce since he can't swallow it
2) Klonopin- As needed for any seizure that is less than 5 minutes, we are to call the Neuro and ask about giving it 1st.
3) Diastat- (liquid valium, given rectally) to be given if he has ANY seizure lasting 5 minutes or greater. Call 911 immediately.
4) Prevacid- before breakfast
* Logen's seizures aren't that easy to spot. Thats an issue. His are typically ones where his head falls slightly backwards (but he does this LOTS, not just during a seizure. You can see it in some photos on the blog), his eyes just 'stare', and he's non-responsive to his name, etc. Problem is- we aren't sure if he's got behaviorial issues or just seizes alot. B/c he's non-reponsive frequently. He has seizures while he sleeps. He wakes up crying b/c of it. They scare him. Sometimes he will walk to our room in tears, and sometimes he stays put until (usually Adam) goes to get him.
* EVERYBODY that keeps Logen needs to know this by heart. We can't take the chance.

~ I'm not trying to be negative. I have high hopes that we get this med in his system and things will start to change. Please pray about this. Please. Thanks for the prayers already. You don't know how much we appreciate them.

* This morning was dose 2 of the daily med. His SLP said he laughed like a hyena for 30 minutes of the session and was fairly lethargic the remaining 30. I figure it is the zonegran. She said it could take a bit for it to get into his system.
* Neuro wants to see him in 1-2 months. They are working on getting him in. She said it's nearly impossible to fit kids in, but they'll do it.