Calm Amongst the Chaos

Mama of 5 seeking calm in 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.

4 thoughts on “First do no harm

  1. Reagan Leigh says:

    Awesome!! I couldn’t be more happy for her and for you!! It just makes me so mad that these doctors make decisions for the good of their research…instead of the good of their patients! Don’t get me started. It’s just so good to hear that Lily has finally gotten some relief again from those nasty things (hopefully never to return again). Thanks for the update!!!

  2. stella says:

    I am proud(!) of you! Of course I understand the neuro’s point of view and these drug studies do need to be done in order to help children but I am glad for you and for Lily that it is over now. How were you to know the path you and your child would take? If nothing else you wont be left wondering if there is something better out there for Lily. In short, you did the best thing for her. Her disease isn’t even diagnosed…how can you truly treat it without trial and error? Good for you. You and your strong little girl inspire me.

  3. Lesley says:

    Well, that is wonderful news. You will be stronger than ever for Lily because of this experience. There’s a whole lot of years ahead in which to carry the lessons we learn.Yay for you guys!

  4. Shannon says:

    That is such awesome news!! I am so happy for all of you…you guys were beyond due for a break.And you are absolutely right…moms gut trumps all!! We know our kiddo’s like no other.

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