Thursday, January 15, 2009

just a little consistency, please!


I know it's been a while since a check in...I've been holding my breath for a week now. When I first gave Austin the Depakote, his seizures gradually decreased for several days...then, as usual, when I started thinking that something was working, they started to increase again on Sunday. It was like a painful pinch waking me up from a dream. I know from the past 7 or 8 months that Austin's spasms have never been consistent. They go up...way up...then gradually go down for a while...then back up. There's only been a couple of times that I let myself entertain the thought that a med is actually doing something. That's when the decrease in frequency is so dramatic that I think surely they're going away. But, just like last time, they came back to his normal range of about 50 a day. They were never gone...just waaaaay down. He seems to be better today than yesterday. Only about 5 so far (by this time yesterday, he'd already reached 20). We increased the Depakote to 2mL 3x a day...and decreased vigabatrin to 500mg/day. He'll be completely off vigabatrin by next Tuesday...

There's some good and not so good news in the development department. The good news is that he's completely age appropriate in his gross motor skills! I pretty much knew that, but it felt nice to hear it. He's walking, squatting, reaching between his legs, etc. The tough part was hearing where he is in some other areas. He's still at 4-6 mos on some stuff. My heart sank even though I've known that he's behind. Just hearing it made it a little more real. I'm trying not to get wrapped up in the numbers...I'm trying to be patient and understanding that maybe he's not going at the average pace, but he's going...just at his own pace. He's so happy...He's making some awesome new noises -the latest...we call it the motor boat...so far cannot be duplicated by me or anyone else! That's what I forget sometimes... that although it's important for us to encourage him to gain new skills, it's just as important to celebrate today and all the progress he's made already. And I can't mention celebrating without sharing the best moment with you all. He gave me two (TWO) kisses the other night! He even reached to me like he was trying to hug me! My heart melted and tears started to well up in my eyes. It was the first time he's initiated genuine, outward affection in months...since the last post I made about getting a smooch from him. It didn't last long, but it was such a moment. It was as if he just knew that I needed that right then.


Jamie and Madie...thanks for the welcome to the Depakote club! I'm crossing my fingers for all of us here! And I'm so proud for Madie in her stander! What a big girl! Keep it up!


Danielle...I'm with you on Detroit! If there's one thing I'm sure about it's that Austin's right hand issues are linked to his seizures...and if I am going to have confidence in anyone it's Chugani. I'm still trying to get everything coordinated...slow going.

3 comments:

JSmith5780 said...

So now that you have my Vig and don't need it, I'll return your shipping if you'll send it back. I had two local families just get diagnosed and one family in need with no money.

Let me know. FIngers crossed that the Depakote may STILL work for Austin. My Austin is having a rough time right now too!

Jamie said...

Oh give the meds time...Madies levels of Depakote got too low..but now I feel as if we are going to wait another few weeks to see how her seizures go..ugh.
thinking of the lil guy!!

baby trevor's mommy said...

Okay so firstly...he is SO stinkin' adorable! Seriously! I just wanna eat him!

I'm with you on the seizures babe. It sucks. The up n' down game. We only saw about 20 yesterday...and my heart skipped a beat. Today we were at the 20 mark before I had a chance to change his first nappie of the day! Ugh!

I hope you can make it to Detroit! I know it's complicated. But I think the possiblity of Austin having a focus (or foci) is there...and worth investigating!

And lastly...it's hard on the heart. When I'm at home Trevor seems so perfect...and just the way he should be. Then we're around peers...and the areas he's behind are glaring! And even though I wish I were stronger...it still stings. The flip side is...it always makes me snuggle him more!

xoxoxo...danielle