Calm Amongst the Chaos

So Lily is on modified year round school schedule. That means for every nine weeks they have 2 weeks off. Only two weeks is more like two and a half weeks plus two half days. Which in more clearer terms, really hard for someone who tries to work a few days a week. Since I am still living in a home with no computer plugged into the wall, long story and I am sure it will be a long time before that changes, I can only update when I am at work and until she is back in school I can only work two days a week, that is all the nursing hours I am allowed (15 a week), so updates will be less frequent for some time. How was that for a run on sentence? Grade away teachers!
So here is the update. Lily is doing absolutely fabulous! Hip Hip Hooray! She started a small dose of Vigabitrine/Sabril on Thursday night. Not much change on Friday. Then Sat. she had one seizure in the AM and I decided to bump up her dose to 250 mg 3x a day instead of 2x a day and Saturday afternoon she had a drop that just a day ago would have turned into a full blown GM seizure, but praise God it just stopped at the drop. I think her and I were both shocked and since we were at a party and not going to make a scene I whispered in my girls ear, “it’s over baby girl. They are gone”. I just knew it. I knew it 10 months ago. I knew it. I knew we should have never made that change. Now I can sit and kick myself in the butt over and over again, or I can say we tried something. We listened to the Dr. for the last time and we know, I knew this but now I KNOW that mom’s gut trumps everything else. Trumps dad’s gut (sorry hunny, I still love you) it for sure trumps Dr.’s ideas. Not that I will not listen, I will listen. I will take when I hear into consideration, but in the end the choice will be mine and it will be made after soul searching.
I was put on this earth to raise this child and I will not do that job poorly. Just because someone went to school for what 8 years plus all those years in training, that will never compare to being a child’s mom who lives with that child on a daily basis. Again I am not discounting our Neuro. We still love him and will continue to see him. But no more will I jump aboard his crazy ideas. That study was only beneficial to one side and they can guinea pig on whomever they want, it just will never be my child again. I wish I had laid down the law months ago, I wish I wasn’t so easily talked out of my gut opinion, but this was a learning experience and that is what life is made of. Rarely do you learn anything from pleasantries. We learn from hard. We learn from scary. We learn from frustration. I have learned a huge lesson. We will move forward. I have a call in about weaning Keppra since Lily was having up to 4 GM’s a day during her wean from the study drug so we know that drug does nada for her. Since I haven’t had a call back yet, I am doing it on my own. I still would like to get the study drug in a small dose to help with her drops, it is as easy as writing us a rx and sending it to a pharmacy in Canada, just like Vigabitrine. Something he could have done oh let’s say 10 months ago, but really wanted a guinea pig instead… hummm don’t doctors vow some little phrase?? What is it? Oh yeah “First do no harm.” But anyway I haven’t decided either way yet. Lily’s posture is better off the drug. Lily’s appetite is hugely back to normal. I can’t find my little camera with the video recorder on it, but Lily is so funny right now. I was giving her those little Dryer Dibbs (yummy!) and I just held it in front of her mouth but not close enough to just put it in. She opens up and leans, I pull back and she leans forward more until she snatches it out of my hand. So there, vision problem? Not when there is ice cream involved. I will try to find that camera, but it may be a lost cause. I am afraid little sister has something to do with it.
So that is our update. I will be back on Friday to post again before I go on another hiatus.
Thanks for your prayers and concerns.