Another 24 Hour EEG



In the parking lot about to head into the hospital, (Emmalin's still asleep).



This past Monday Emmalin and I headed back up to the St. Louis Children's Hospital so Emmalin could have another 24 hour EEG done (an EEG allows the doctors to see what seizure activity Emmalin has going on in her brain).  Although Emmalin had a 24 hour EEG done in April of this year (right before her brain surgery), Emmalin had to get another one done before she can have the VNS (Vagus Nerve Stimulator) implanted.  So up to St. Louis we went.  They (the neuro doctors on the floor) said it was very interesting seeing Emmalin's EEG now verses back in April.  They said you could definitely tell a difference since the corpus callosotomy (May 2nd of this year) and this is a good thing (I'm pretty sure anyway).  The idea of the corpus callosotomy was to keep the seizures from "crossing over" to the other side of the brain (seizures start on one side and then will go to the other side, to where you would see seizure activity on both sides - well at least this is what was happening with Emmalin).  The goal was that by having the brain surgery, it would keep the seizures from crossing over, which would hopefully make Emmalin's seizures less intense, or not as long, or not as frequent (or all the above). 

So... although Emmalin did have some seizures just on the left side and some just on the right, Emmalin also had some seizures that "crossed over" to the other side.  I asked if that was "normal" to see at this point (seizures starting to cross over this early - 6 months since her brain surgery), or if it was just Emmalin because her seizures are SO aggressive.  The doctors didn't really answer the question...but I really don't think that it can be a good thing :(  We will see Emmalin's neurologist, Dr. Weisenberg, again in a couple of weeks and we will have the opportunity to ask her more questions about the 24 hr EEG and see what she thinks about it all. 



Our view out our window - if you look really close you can see the Arch way in the distance :)



Honestly, even though Emmalin didn't seem to have the results that we had hoped as far as seizure control goes, we have seen SO many improvements cognitively since the brain surgery (and to Jarrad and I, this is HUGE)!!  This brain surgery allowed us to "see" a little more of Emmalin.  It has allowed Emmalin the opportunity to find a way to show us that she understands more than what we thought and also allowed her the opportunity to find more of a "voice".  We are SO grateful for all of these new things!

I would be lying if I said we weren't disappointed and even a little sad about the fact that some of her seizures are already finding ways to "cross over".  But it is SUCH a big deal that Emmalin is finding ways to communicate with us and the world around her (in her own way of course).  Yes, she still has a LONG way to go in this area, but we are at the beginning of it and that's all that matters!!



This is Emmalin refusing to open her eyes because she didn't like the stuff on her head.



The perfect example of Emmalin starting to find her voice is this:

She eventually decided to open her eyes - lol

Monday after they put all of the stuff of Emmalin's head and we were back in our room in the hospital, Emmalin started making these sounds (telling me she didnt' like it on her head and that she wanted it off), she started swinging her arms up around her head to try to knock whatever it was up there off (remember she's blind, so she had no idea what was on her head), and she just kept moving around like crazy trying to get away from it.  While she was doing all of this, it was in NO WAY like she was in pain or in a panic, but she was making sure that I knew that she was annoyed by whatever it was that was on her head.  It was like she was saying, "look mom, instead of just sitting there watching me try to get this off by myself, I'd appreciate a little help here".  Of course I kept talking to her about what was on her head and why it was there, but she didn't care, she just wanted it off.  Sassy and Stubborn, that's my "new" Emmalin (and I love it).  Emmalin did eventually get the white "cap" off of her head (the "caps" were just gauze and medical tape - they put it on there to try to keep the kids hands out of the wires).  Actually they came back in and put another cap on Emmalin but she managed to get that one off in around 5 minutes and that's why in most of the pictures you will just see Emmalin with crazy hair (you will see the "caps" in the pictures on the back of Em's head).  Later that day Emmalin finally decided to accept defeat and stopped "complaining" about it and we were good for the rest of the night.  But the next morning, when Emmalin woke up, she managed to find a way to get her hands tangled in the wires and got a couple of the things ripped off her head.  I think she was pretty proud of herself!  Once she figured it out, I couldn't keep her hands out of the wires, so they just came and took it all off (which is what Emmalin was trying to get someone to do in the first place). 

And the cap is off!

Side View

As crazy as this sounds, seeing/hearing Emmalin as she was complaining to me probably doesn't seem like a big deal, but it was a HUGE deal!!  You see, in all the other EEG's that Emmalin has had done (and believe me she has had a lot of them), this is the FIRST TIME she has had an opinion about it or tried to do something about it.  It was a HUGE moment!!  I know most parents in that situation would have probably thought, great they don't like this and it's going to be a LONG 24 hours!!"  I on the other hand, kept bragging to everyone that came into the room saying, "LOOK!!  Emmalin is telling me she doesn't like that being on her head!! Isn't that exciting!!"  I actually got a couple of looks like I was crazy (until I explained our situation).  I was SO proud!!  It was another victory for us!  Something to celebrate!!  And even though everything we were told this hospital stay wasn't "great news", we did have that victory and that's what I choose to focus on and (as I said earlier) to CELEBRATE!!

                                                                  God is SO Good!!

Going HOME!



Me and Emmalin