Monday, December 29, 2008

Monday, Monday

Even though I'm not "technically" working, I was so dreading today anyway!! Chad going back to work...the end of the holiday weekend...resuming the normal day to day... Yuck! I didn't do anything special over the weekend...just lounged in my pjs and played with my Christmas goodies...but man, was that nice!

I had tons to do, but I did it a little at a time...I organized my kitchen (somewhat) for all the new kitchen stuff (I racked up in that department!! -my dear husband spoiled me rotten -not to mention my mom and mother-in-law!)...I reorganized our closet...Chad totally remodeled it in one day and we doubled our space! I played and played with Austin and all of his cool new stuff...a rocking horse from Santa, a big stuffed (and safe) puppy from Grammer and Pawpaw, a ball pit from Aunt E. He also got a toy from his Aunt Jill that he actually tries to work...and those little beanbags that came with the toy from Nana and Pawpaw...he loves to squeeze those things! He gets totally loud with those! But, as usual, his favorite thing is still walking, walking, walking!!
I was hoping that he'd be a little more excited about all the Christmas happenings, but I think the vigabatrin increase had a lot to do with his moods. He just wasn't up for much at all. After a couple days, he seemed to improve mood-wise, but we're still seeing lots of seizures. His clusters are way way down, but the "slams" are still going strong. The helmet was not much help since everywhere we went still had hard floors and we couldn't let him walk freely. That probably had a lot to do with his mood too. By the weekend, he was happy and squealy as usual!
Oh, man...just got off the phone with our epilepsy clinic...we had an appointment for Jan that was cancelled by them a while back and rescheduled for Feb 27 -which I thought was ridiculous...then, the other day, we got a letter in the mail saying that the Feb appt was going to be cancelled as well. Now, the next available appointment isn't until June 30! That is totally nuts! I guess we have no choice but to find a new specialist, huh? I tell ya, the drama with that place never ends!
Anyway, I hope you all had a wonderful Christmas! I'm recovered somewhat physically...but my house is a different story! I have a nice and neat closet and kitchen though! :)


Jamie said...

ohhh I love it! Austin is alll dad! wow! So glad to had a merry christmas! Watching MORE snow come to CT as I type!! Eeeek!
Got a chirping bird in the other room as

JSmith5780 said...

So glad to hear about the great Christmas!

I am so sorry the Vig isn't working for Austin. I truly hoped it was THE med for him.

I don't know the full med list you've tried, maybe you can list it and I can think on others. Does he still have the hypps? Perhaps it's worth trying meds to stop the atonics? Or maybe something in conjunction with the Vig to control the atonics (head drops)?

Looking at the information on this page (, the only med that specifically states atonic/tonic seizures is Rufinamide/Inovelon/Banzel which is newish to the US. Just a thought. Of course it's hard to think about meds when you have to worry about HAVING a neuro/epi in the first place! Good luck and keep me posted!

aRtcHixX said...

I'm sO tickLed to find out that Austin liKes the baLL pit! SouNds like your littLe maN had an awesome toY turnOut! Lots of Love there!!!
The Christmas piCs were creative and totalLy gorgeous - gorgeous parents=gorgeous children ... and Bailey too...LOL
auNt e.