Our Little Two Year Old

I haven't posted in awhile, so here's the latest on the LaBonte front.

Ava recovered nicely from our "attack of the rotovirus". Last Tuesday, March 4th was our first "normal day", and things have been somewhat uneventful on the immune system front.

Ava had a stretch of about a week of seizure free days after we were home from the hospital, and slowly....we're seeing them creep back. One here, one there, then two here, three there and so on. They are, however, pretty subtle compared to the ones we were battling before the diet.

So when I see seizures.....I'm just downright MAD. I'm mad that my whole day is focused on doing everything I can to stop the seizures....and their STILL there. I'm also, just so very tired.

This diet pretty much consumes my entire day. Ava eats 6 times per day (three meals and three snacks). Between preparing and weighing all six meals, making sure she eats on time, feeding her most of them (as to not loose any melted better), and writing down all her fluid consumption.....I'm pretty much spent at the end of the day, with nothing left for anyone or anything else.

As crazy as it sounds, sometimes I feel like this whole epilepsy ordeal is just like one of those never ending baseball games or one of those bad reality TV shows that you really don't want to watch, never admit to your friends your hooked on, but just MUST find out what happens every week.

I tell everyone she's doing wonderful, and, of course, the few seizures per day she will have, will be at the worst possible time.....for everyone to see. I'm really considering if they could rename Murphy's Law, to LaBonte's Law!

I found myself actually being frustrated with Ava this week for being so persistent with demanding drinks. The excess fluid is causing the drop in Ketosis which equals seizures. Why can't she just listen! Doesn't she realize she's doing this to herself!

I was actually laughing at myself this morning reflecting on our week. Ava is two years old! Yes, she does have many obstacles, but in many ways she's just a regular two year old....testing me...and trying to flex her muscles. So this is the part where I tell her no more drinks and that's that...she cries for awhile, but we get through it (and it took me all week to figure this out!!!)

I expect so much out of my little girl. She wakes up every morning having to deal with this condition, and still laughs, plays, and tries like hell to just be "one of the guys". I guess she just doesn't realize that on top of having to eat six super disgusting meals per day, completely apply herself during speech and physical therapy, go to bed on time, that she must NOT as for too many drinks!

So here's to you Ava......

from today on.......

we don't expect you to do it all. If you have a few seizures, you have a few seizures.. We are all in this together. We're going to keep you extra busy this week so you won't be drinking out of boredom, and hope we have a better week.

We know your doing the best you can, and we're going to make this work. We're sorry for putting too much pressure on you. You try so hard, and, Ava, we are so proud of you EVERY day.


Here's to a great week..................