So we have a couple of updates...
we are officially on a weaning process with the Vigabatrin. I must say I'm a little bit nervous about it, but we have to do it at some point right??!! So it will take a total of 4 months to take him down off of it.
We also saw the visual impairment doc today...and Kenny's vision went came from 20/2000 all the way to 20/360! Such an improvement. Well it's because the infantile spasams are undercontrol. He did let me know a few other things though. That if Kenny does have a metabolic disorder that later in life that could effect his vision again...oh well, and predict or control the future at this point. Just something for me to keep in mind. My kids are all doing so well right now! So well that they are ganging up on me and driving me crazy some days...lol! I think it's cause winter is coming and they really can't do too much outside play and that suck's. Oh well, we will survive...and they will find new and interesting ways to drive me nuts...but that's normal right...lol!
so i'm not sure i get why there is such a need to take him off this antiseizure med??...Anyhow so super happy for you that Kenny's vision is increasing for the better. That is what Alistair was tested at when we were down last ie 20/360. I think he's improved since as well as he has increased visual contact with people and objects now! So nice for us mums to have those improvements for our little men! : D
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