What a day...

This picture pretty much sums up our day.

Checking out Treehouse, eating a wagon wheel - that's how she rolls.

Lola in Happy Meal heaven....notice the fries all over her lap - couldn't stuff 'em in fast enough.

Good ole Liam had this costume on when we came home, and sang us "Five Little Leprechauns". So funny. He's quite a character.

Lola had her sedated MRI this morning - and what a nightmare that was. Actually, things were fine once we finally got in there, however, the 2 plus hour wait with a screaming,starving 3 year old who didn't get to take her am seizure meds (though I'd explained the situation to the MRI staff over the phone, neurologist, etc.).....you get the picture. Have you ever heard Lola cry? Let me tell you, it's an experience - it sounds like a raptor stuck in the brakes of a car. No joke. Anyway, yeah. Fun. So we got through that, and were sent up to Medical Day Treatment - Lola had a seizure on the way up. Great. We got set up there, I force fed her her meds (always fun) and she fell asleep. We were so thankful for that two hour reprieve from the screaming - and so happy that she actually got some rest. Anyway, she had a few seizures during the IvIg, which was disheartening, but really, given her day and her med situation, I wasn't too surprised. We got out of there after five o'clock - the last two hours were rough, and she didn't like being tethered to a pole on a short leash, unable to leave the unit. She got to have her blessed Happy Meal on the way home - poor girl earned that one and then some. We're scheduled to have Ivig again in three weeks, and three weeks after that, etc. etc. We're praying it helps control these seizures.

Lola also had an EEG last week, and a neuro appt. We changed meds (well, we're tapering off one, and up on another) from Divalproex Sodium to Topamax. We still think, in the back of our minds, that these seizure meds are responsible for the seizures - all starting with Trileptal. Our neuro told us that this med caused the atonic seizures - she said that once the med was gone, the seizures would be gone. ??? Anyway, yeah. So I've cut her pm epival dose by one pill, and so far so good - decreased seizures. Now who knows, b/c we have to bring the Topamax up very slowly, so she's on a tiny pm dose of that for now.

While we were at the neurologist's, she said that she'd been consulting with another neuro who reads the EEGs. She said he'd mentioned Lennox-Gastaut, which threw me instantly into panic mode. I'd read about it before, and when I went home I read about it for hours and hours. Though she doesn't believe Lola has this, it's worth mentioning that another neuro sees similarities in her EEGs that coincide with LGS. We should know more on that April 7 when we see our neuro again.

So there you go - the reason for my non-existent posts. I'm so tired of worrying. It's hard to stay hopeful some days. Lola seems to know when we're at our lowest - several times today, when asked her name, she smiled and replied, "Yaya" with enthusiasm. Yaya is what she called herself before she got sick - Yaya Exy. Pray for a break for this kid, will ya?