Tuesday, December 23, 2008
Vigabatrin's last chance...
I've been quite the slacker lately, haven't I??
I'm sure you all know how that goes though...the holidays (and Austin's lack of sleeping) have kept me tied up. But, I've been trying to enjoy the holiday movies and decorations too!
I'm assuming it must be the vigabatrin making him restless at night. It's almost entirely predictable now...he conks out easy at first...wakes up about 45 minutes later...finally goes back to sleep after about 2 more hours...then up again by 3:30-4:00 am...til 5:30-6:00 am. It's sadly reminiscent of the ACTH days...although not quite as bad (thankfully!).
We've given the last increase plenty of time to work, but it's just not going to. We're increasing one last time starting tomorrow. Either that will help, or we will probably start to taper him off it entirely. We're clueless as to where we'll go from there. There's the good ole keto diet...but Chad and I are not in agreement on that one. There's Detroit...but that's not a treatment, only a chance to find out if we will have new options to consider down the road. There's more meds, but I'm so sick of AEDs I could scream! It's overwhelming right now, so I'm just trying to focus on getting through the holidays and making the best of it all.
This is the first time in about 7 years that I haven't had to work like mad through the holidays (I don't count last year since Austin was a newborn and I was still recovering from the C-section! -I didn't exactly have time on my hands then!). It was so wonderful this year to finish shopping and wrapping in time to actually contemplate baking! I just need to get that started, huh?! :)
I'm certainly excited to tell you all that Austin's been making some great new sounds! He's not quite babbling but I think he's getting there. When he walks he loves to Yee-yee still and now he's added Gee-gee to the mix! He's gurgling again and I just get so tickled listening to him!
As much as I'd like to, I'm afraid I probably won't get a chance to post again until after Christmas...I'm just trying to be realistic here! I've got to get busy, busy...there's our regular hectic evening schedule tonight, last minute shopping on top of that...then baking and a couple more gifts to wrap! Is it crazy to think I can actually get that done by morning??? LOL
Of course I will be checking in as soon as possible and hopefully posting great new Christmas pics!
Merry Christmas!!! Love you all!!!