Finally had time to jot a note - Cody's asleep.  Luckily my mom was here overnight and could lend a helping hand with the boys this a.m.  It is so crazy, I just told Cody's school team yesterday that I was so thrilled he'd been seizure free for 1 whole week!  I felt like I was in Disneyland the whole week!  And I got home from that meeting, put Cody in his high chair, and noticed a "cringe" - I said, "oh no........." and within about 20 minutes 3 more.  They were small, but they were seizures.  I got that sick feeling in my stomach - knowing what lay ahead.  Sure enough this morning at 6:40 am they started - not "huge" seizures - but for 20 minutes straight he kept having medium sized ones.  And I could swear he wasnt coming all the way out of one before another would hit.  I think I counted 5 or 6 in 20 minutes.  So I broke out the diastat. 

As always, I dared to hope this week of seizure freedom.  And the crash after hoping is so intense.  I thought the Topamax was our wonder drug.  The day he started it the seizures were over.  At least for 1 week's time.  Dr. Saneto's having us increase the dose to 75 mg a day (3 sprinkle caps) which will take him time to adjust to yet again.  Zombie-boy will come back to haunt us.  But if it rids us of seizures, who cares! 

Still......I am grateful for what I got.  A blessed 7 days without seeing my baby crumple into a seizure.  7 days where I didn't cry over him and pray for the seizure to stop.  7 days where he slept 12 hours a night because he didn't wake up having seizures.  And we slept too!  7 days of hope.  I'm grateful for it all. 

It's funny - when you've seen your child have seizrues every day for 3 years -- then he doesn't for a week -- it's amazing how quickly you get over it and just assume he won't have anymore.  I had seen him for a week without a seizure and my mind just couldn't imagine or almost remember what one looked like.  Funny how you can shift that way.  Course now I remember vividly because it happened just hours ago.  But since the diastat at 7am he's been fine.  Actually, quite happy.  He did some good PECS work in fact. 

One more thing I'm grateful for is our neurologist who continues to bless us by emailing me back the same day on emergency days like this one.  I never had that in Oregon.  It's so nice not to have to jump through the hoops of nurses, messages, Dr's on call.  Instead I just run to my computer right after a big seizures and email him.  And he always responds.  Course I am careful not to abuse that privilege and choose my emailing carefully.  But God has truly given us a gift with our Dr. 

Cody's IEP meeting went well yesterday - we came up with some really solid goals for him.  Things I know he's capable of.  Goals for jumping, rolling a ball, eating with a fork and spoon, putting his coat off and on, learning to wave hello or goodbye. 

I'm so excited because he's turning pages in a book!  It was one of his ABA programs "page turning" and he has it down!  Now he'll sit on my lap and turn pages!  It's not particularly "meaningful" for him - because he doesn't listen to a story and pay attention to what's on the pages - but he sure knows how to turn them and that's the first step! 

He's such a hard worker - even in the midst of all this. 

Please keep him in your prayers or thoughts - I hope that this past week of seizure freedom was a signal that we're doing something right and that this drug may help.  Hopefully today was just a fluke.  Please, Lord, let it be so.  And if not, scrape me up off the floor and give me endurance for this road.

with love, Shawna