Thursday, October 28, 2010


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! 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!

Thursday, October 21, 2010

Not sure how to keep up!

It's been so crazy busy nuts around here. So hopefully i can do a quick catch up. I got some new AFO's being made for Kenny. his last one's his feet just pushed out of them. I chose a nice green camo for him! Must be stylish. He's turned into such a happy kid. So weird because he was a screamer for so long. His hearing test has come back completely normal. So no hearing loss. We have met with Bio-Chemical disease control. The tests that they have done thus far haven't told us much, just what it isn't. So now more blood work. They are convinced that it's something metabolic. It's just ruling it down to what it is. So the PVL may not have been caused by the tramatic birthing process. Oh well, doesn't change the damage done, but if we find out what it is it will prevent more from happening.

Kristen is talking! and talking and talking! Wow the kid is actually communicating, and signing. if i am busy and she's talking to me, she will actually sign it! so cute! I just can't believe that in a matter of 4 months she will be FIVE!!! Are you kidding me! FIVE! oh dear. how quickly they grow!

Courtney is LOVING pre-school! she is so cute, she says "we go to Perrin's??!! yeah!!??" the teacher's name is Mrs.

Joe is doing his Joe thing at school. We are still working on basic's with him. he's having trouble recognizing his letter's...still! It's frustrating for me to watch and sad at the same time. but he tries so hard!

Me, well i am going to need a break soon. I don't know how i'll be able to keep up this hectic schedule that i'm doing right now. but winter break will be here soon!