I've been getting emails asking how we're doing, so I thought I better update.  Sorry it's been so long, we've just been busy.  A good busy - swim lessons, gymnastics, ballet, birthday parties, and playdates.  Not the kind of busy that involves manually extracting the mucus out of Amelia's lungs 24 hours a day.  Also sometimes I have to take a break from Caringbridge Land and pretend like we're just a normal family. 

Amelia's doing fine.  She's had a cold for the last few weeks, but hasn't needed oxygen, which has given me a renewed hope - something I desperately needed.  Since she recovered from that horrible cold she had at Easter time, her seizures had gotten worse and worse.  She started having them all day long (20 - 25 a day) and having different kinds.  Now she has laughing seizures which are a treat to hear and disturbing all at the same time.  She also starting having gagging seizures, which are no fun at all.  I started her on phenobarbital about a week ago, and it is working wonderfully.  Now she's having 5-10 seizures a day.  Since she takes it at night, it also helps her sleep better at night, which means I'm sleeping better at night.

I might be getting a nurse one or two nights a week, so I can get some solid sleep.  That's the idea anyway.  We'll see if I can actually trust someone else enough to leave Amelia with them while I sleep.  Time will tell I guess.  I'm willing to give it a try.  I really just need someone when Amelia is sick.  That's when she requires 24 hour care.  I believe the way it works is I'll be given a certain number of hours per quarter, so I can use the nurse more when Amelia's sick and less when she's not. 

I'm really hoping for an uneventful, fun summer.  Thanks for checking in with us.