Tuesday, April 20, 2010

Seizures, Venom, BBQ

Lily’s having a big seizure each day. The new med is making her so tired and I’m thinking it may not be worth it. I really hate trying to figure meds out. They make her tired and she is still having seizures. I would love to take her off everything, hospitalize her, and start from a clean slate. Lily is on four meds right now and I know she doesn’t need all four meds. It’s so frustrating! I just put her on the full dose today of the new med, Vimpat, and we will see if it helps, if not I may just take her off. She is spacey and sleepy on it and I’m just so tired of trying to figure it all out. I don’t know this stuff. I’m not an expert. I’m a mom thrown into this and I’m just trying to find my life boat. Can someone just toss me a life vest? Please?
Talking about being thrown into this, yesterday Andi Jane spewed evil hatred upon me, and left me wondering what the hell I do with this. She didn’t get her way and bam, she told me she hated me, won’t love me, that I am STUPID (a very bad word in our house, she might as well thrown an f-bomb on me). It was awful. She was out of control. I drove home while she yelled at me and didn’t say a word. We got home and I said, “Get your butt in your room right now. RIGHT NOW!” She went and there she stayed until dinner time. It was about an hour and a half. But I was like, what do I do with this? I’ve seen her freak out before, but this was ridiculous! She was very apologetic later, but still… I just didn’t know what I am supposed to do. I didn’t react, I didn’t yell, I didn’t spank. But then I felt like a doormat. Did I do the right thing? I have no idea. I didn’t take her with me to the store and that is a punishment in itself, since she goes everywhere with me, but I just think I needed to do more. Or maybe I did enough? I don’t know. Sigh.
Oliver is still my sweet boy. Thank God. No complaints about him, yet. Give him a few more months I’m sure.
There IS good news though, the guys finished up our back yard! Yay! It looks great! Well not really finished it, the big stuff is done, we still have to paint and put in the actual BBQ in but otherwise they are done. The kids loved having Papa Steve here for 10 days and I think him and Andrew really enjoyed working together, well except when they were close to killing each other. :) I am going to put some pictures up on flickr today. If we are facebook friends you will have seen it already, if you aren’t…. why not?

2 comments:

Jennifer said...

I'm a long time reader that is sort of de-lurking (I don't know if I commented before) to tell you that I really hope Lily's seizures get under control soon. I am sure it's incredibly frustrating to deal with those every single day. Praying for you!

And I am not quite a parent yet, but I am pretty much a third parent to my niece. I care for children constantly, as well, and I feel that you definitely did the right thing with Andi. Extinction method is what you did in the car, you didn't give her a reaction like she was probably wanting through her actions. The fact that she was apologetic later shows that you did well :) You are such an amazing mom, I'm not just saying that. HUGS!

Just Another Ordinary Miracle said...

The med roller coaster is crazy. Ivey has just dropped from four meds down to two, but in the last week seizures have gone haywire...again. I'm with you on this. Mom know best - go with your gut. There have been a couple that needed to be titrated up and back down before she was completely off of it - so beware of that.

I am definately no expert - but the boys tend to get a little more on edge when something is going on with Ivey. Most of the time it shows in a manner unassociated with Ivey. I have sent them to their rooms more than once. In the end, once we have all calmed down and can speak calmly - I can ask them what is making them so angry. Usually it is the unbalance of time spent 'nursing' Ivey and pull of that time away from them. I haven't figured out the solution yet. Let me know when you do. But, when all else fails no matter how mad I may be at them - Dairy Queen solves the problem (and squeezing in an extra hug). I get so wrapped up in her 'stuff' things just get unbalanced.

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