Would you believe Cody needs GLASSES?  Oy vay.  I can't even imagine.  We saw a pediatric opthamologist yesterday who specializes in special needs kids and vision therapy.  She said he has a stigmatism (which we've known for awhile) - but it's now to the point where he needs glasses for it.  I know they make glasses for kids that strap around the back of the head.  But still.......I can't imagine Cody keeping them on.  We'll see - all we can do is try.  He may surprise us which would be really cool.  It's just ONE MORE THING, ya know?  I went to her to try to ask some questions about how his seizures affect his vision - and instead I got a prescription for glasses.  ugh.  I bet he'll look like the little kid in Jerry Maguire with the big glasses and spikey blond hair...The kid that kept reciting with a lisp, "the human head weighs 8 pounds." 

We are still plugging away at feeding him.  I've added 2 benecalories a day plus some protein bars.  He *seems* to be gaining a bit - but it's so hard to tell.  We go in tuesday to weigh him, do a blood draw, and have his VNS turned up.  So we'll see Tuesday what direction we'll be headed:  feeding tube or no feeding tube.

Poor little guy, last night he had about 15 seizures that were ocurring every 2-3 minutes.  They were very short, but so frequent.  We wound up doing diastat - fearing that the seizures would start to run together and create one looooooong seizure.  That did the trick and he was knocked out all night.  You'd think I'd have gotten some sleep, but as I told Don, I'm so NOT used to him sleeping soundly that I was up every half hour making sure he was breathing!  So we still battle the seizures.  He is at 1.5 pills Rufinamide (also called Banzel) a day - which means we have a ways to go - but if it's not working yet - it probably won't.  CRUD. 

On the brighter side, I had a rep here today helping me pick out a 'medical stroller' which is going to be really nice for Cody.  We still use the old worn out Target stroller we got for him as a bay.  He's nearly outgrown it.  A medical stroller is made for bigger kids and has all kinds of nice padding, supports, and is just way sturdier and more appropriate for him.  We also are getting a special needs car seat which will be needed as he grows.  lots and lots and lots of work getting these kind of items - meetings - petitioning insurance - Dr. prescriptions - therapist notes - and on and on and on.  But we are grateful that insurance provides things that make Cody's life better.

I hope you are all having a nice week so far.  It's almost the weekend - yay! 

with love, Shawna