An update

So....in my last post I didn't really update about Zeta....

Trust me.....I got some feedback about that:)

We're grappling with another big question with Miss Zeta.

Since the hospitalization in December we've noticed something.....different.  I haven't been quite able to put my finger on it, but something has been.....different. As you know, she was hospitalized again at the beginning of this month.  I've really just been thinking that perhaps because she was so sick in December and then in the hospital again a couple of weeks ago she was just having a really hard time getting over everything.....but in the back of my mind something keeps telling me that something isn't right. 

After some discussion with her home nurse I finally called her neurologist.  We think that maybe Zeta has developed a new seizure pattern.....initially I was thinking maybe just some absence seizures....now it sounds like they may be complex partial seizures which sounds a little more scary to me....I still hope that they are not seizures at all...but she has really been a totally different child.....

She has these blank staring moments while grinding her teeth.  Her heart rate sometimes does funny things again.  She's been having some difficulty with her feeds....and she is sleeping anywhere from 18-20 hours a day.....Now, if either of my other two were acting like this we would have been at the hospital door weeks ago......

but remember this is Zeta....and Zeta doesn't play by the book....

I guess I've put off talking to neurology for this long because this seems minuscule compared to the seizures she experienced prior to the brain surgery..... I mean she's breathing and she's not blue.......but she is not the glowing little girl we saw after brain surgery.....perhaps I've put it off because I don't want to go on another journey of finding out what is wrong or worry about trying to make people see what is happening....mostly I believe I've put it off because I'm not willing to accept if it really is new seizures that we're dealing with........

The neurologist gave us the option to go in for a 6 hour EEG (a test in which they put electrodes on her head and read the brain waves) since it's been a while since her last one.  This way we could try to catch an event happening to see whether or not it is seizure related and where it may be stemming from......He also gave us the option to work on some of her seizure meds first to see if that makes a difference.  It scares me any time we discuss changing up her meds simply because sometimes the meds can be just as bad as the seizures themselves.  However, we've opted to try the med route first.  With the EEG we aren't guaranteed she will have an event during the recording and if she doesn't we would still go ahead with the med changes to see if it makes a difference so I guess we're just trying to buy extra time.   We started the changes yesterday and will continue for 5 days before making a decision as to what to do next.  It goes without saying - I've been watching her like a hawk.  The drawback to all of this is that anytime we do anything with her medication it typically makes her very sleepy.  With her already sleeping so much anyway I'm not so sure I will be able to tell a difference either way.

So that's Zeta's story for now.  She's ok......but she's definitely seen much better days!  Please pray for her and pray that she has peace. Pray that we see that playful personality and heart-grabbing smile more and more each day!  Continue to pray for our boys and our family.