I posted this on Facebook the other day but for the benefit of those who aren't on it...
The other morning I was driving Julia to school. All of a sudden a car pulled out in front of me and I had to quickly hit the brakes. Before I could say anything, from the backseat I hear Julia say..."Oh shit!". Although I was horrified my potty mouth while driving had obviously made an impact, it was too funny to not laugh. Which was probably the wrong reaction...the light in her eyes once she realized she'd said something funny probably means we'll be hearing it a lot from now on. Note to self...stop cursing!
So it's now been about a week since we came down on her Vigabatrin dose, we're now at 1000mg/day down from 1250mg/day. Again, we are already seeing a very positive difference. More energy, more speech, just more more more. Amazing. We are nervous though about this weaning process...Michael and I both can't help but remember the awful seizures she had in the hospital right before surgery when she was totally off of it. We just have to remind ourselves that we're dealing with an entirely different brain now. One that has far less nasty stuff to try and control. We may take the wean much slower than the guidelines Dr. C gave us, just for our own peace of mind. I'm going to talk to her local neuro to see if there's any validity in that line of thinking. But so far, so very good.
7 comments:
You're not alone. Adam has uttered the same word, and I'm 100% to blame. I'm much better than I was pre-Adam, though, I swear.
I'm so glad that the med weaning is going well. What wonderful news.
Yay, Yay, and Yay!!!!
So far, no bad words over here which really is a miracle. I seem to have given up swearing cold turkey when I had Caden... And trust me I had a potty mouth.
It's good because he's a little parrot when you least expect it. A few days ago he said "Mommy" and I said "one minute Caden" and he said "No Mommy, right now!" I think I might have said that to him a few times.... :-)
Too funny!
It's great to read that the wean is going well. I've been thinking about you all.
My oldest came out with the word b*tch the other day. Might have to wash MY mouth out with soap :)
Glad the wean is going well so far.
Oh...I laugh far too often when my kids are cheeky. But hey...it IS kinda funny. ;)
...danielle
We saw the same thing you see with the Vigabatrin wean. Everytime we took half a pill off, we saw increase in general awareness and interest in her environment with our daughter. She was on zonegran thereafter for a while. We saw little developmental progress while she was on it. But then we were able to stop all medication and surprise surprise, suddenly shes picking up new words everyday!
Oh Lisa, somehow I did not know about this blog. Very happy to find you again, girl. Glad things are going well and I am looking forward to catching up with your archives.
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