Saturday, January 28, 2012


I know many people follow, check on, read, or stumble across this blog.  Although we know many of you, I am sure that there are many that we don't know.  Some of you know us personally, or have met Waverly at some point.  But many of you have not, or will not.  This is for all of you.  But mostly, it's for me. 

I'm sitting here holding my sweet baby.  It's naptime, which means the older two are "resting" (although I hear an awful lot of activity going on up there!).  So I just get some concentrated time with my baby.  And as I was sitting here with her, I started recounting the little tidbits about her that I just love.  So, let me recount them for you.  Because she's pretty fun.  And sweet.  And so stinkin' cute!

Her eyes follow people when they are near, and will follow you even as you walk around the room.  She loves people.

She loves to be snuggled.  Especially laying on her left side held tight against you.

When I make a noise at her, she'll make the same noise back.  It's a certain type of noise that I can't figure out how to describe, but we'll go back and forth for several minutes sometimes.  I love these little conversations with her. 

She often turns her head when she smiles over and over again.

She still sucks on her paci so loud.  I love that she loves it so much!

Her little ears are wrinkled.  They're becoming less so, but still a bit wrinkled on the edges. 

Her belly is so big it often sticks out of regular shirts.  It's silly, and cute.

Her hair is still a little longer and thicker at the base of her neck, but it's starting to even out and even grow in some on the top.

She likes to listen to music.

She sleeps better with a little light in the room as opposed to it being completely dark.

She often has an awake period in the early morning hours.  This happened when I was pregnant too.  I'd wake up in the "middle of the night", and she'd be awake too. 

She likes blankets on her.

She makes people smile. 

I love how one of the things that I've learned these past months has been to slow down a bit and really take in everything.  When you truly view life as fleeting, you stop to notice the small things even more.  Not that I totally rushed through life before, but now it's even more intentional.  Thank you, Waverly, for teaching me, for being you, for having tidbits about you that I can treasure. 

Tuesday, January 24, 2012

Hypsarrhythmia is back-follow up from today's appointment

We had a good appointment up at UVA today.  It started out with a one-hour EEG, and then a visit with the neurologist.  Basically, Waverly is not just having Infantile Spasms, but she is in hypsarrhythmia again.  That basically means that her brain waves are chaotic and disorganized.  This impedes development (as well as causes the Infantile spasm seizures).  This isn't a surprise to us, but still not great news (as opposed to just having the IS alone without that brain pattern). 

She started her new medication (vigabatrin, or Sabril) on Sunday night, and we are increasing it to two times a day now.  She was on prednisone again just for a few days until we were able to start the vigabatrin, so today was her last dose of that. So now it's just wait and see if the vigabatrin ends up working.  Most likely she'll be on it for at least 6 months.  She's been having the IS most every day, although only a few a day (yesterday only once, and so far none today!).  She has been quite the grouch, though, from the prednisone we are assuming.  She's also been a little sleepier than usual (we think due to the new medication). 

One funny thing happened at the appointment.  I had just passed Waverly off to Johnny for some reason (can't remember why).  A minute later we heard this explosive sound from her diaper.  We both grinned and then he moved her forward to expose what he already suspected.  She had exploded out of her diaper, onto her pants, up her back, onto Johnny's pants, and onto the chair!  Right in front of the doctor.  So we had our discussion with him while cleaning up the little mess that she had left behind! 

Below is a photo comparing a normal EEG with an IS/hypsarrhythmia EEG.  Since I'm an educator by nature, I enjoy being able to learn about all this and share with others.  (Although know that I'm sure I make plenty of mistakes in my explanations and interpretations!)