Saturday, May 30, 2009

Why can't I slow down?

Firstly, FANTASTIC news for Sophie!!! She's made it through surgery with great success! All the best case scenarios played out, and hopefully they'll never see another seizure again!! HOORAY!

As for me, well, I'm enjoying a fantastic weekend away from Todd & the kids at my family's cabin on Vashon. It's amazing over here: mid-70's, incredible view, and quiet. I arrived last night and spent the night by myself. This afternoon two of my best girlfriends are joining me for some girl-time.

But...(there's always a "but")...I'm finding it hard to just let go & relax. Maybe because I'm so constantly wound up it would take a full week of this to unwind? I don't know. But I just feel antsy. Like I should be doing something. Preparing meals, cleaning, researching, whatever. Anything that isn't totally FOR ME. It's weird. I wasn't expecting to feel like this.

(Maybe I just need some more wine! LOL!)

In Lily news, we started her on Vigabatrin again about a month ago. She was on VGB back in early 2006 when she was just a baby. She was on a very high dose of it, and it ultimately was responsible for her status seizure that landed her in the hospital for three days. During this hospital stay, her MRI revealed subtle brain changes that possibly indicated a terrible mitochondrial disorder called Leigh's Disease. Fortunately, thanks again to the IS Yahoo Group, I learned of another kiddo, Vic, who had a similar finding but it wasn't due to Leigh's; it was a rare side effect of the Vigabatrin. Some fast & furious research, phone calls, and discussion yielded a few other kids with similar findings, and the only way to know if it was due to VGB was to wean off of it, and repeat an MRI in six months.

I think you know where this goes, right? Lily didn't have Leigh's (THANKGOD!), but instead was just a rare side effect. She was one of a few kids who was written about in a paper published by Dr. Pearl at Children's National Medical Center in DC, about this particular side effect. Well, we always wondered if VGB would be good for Lily because it did really help control her seizures in 2006, but we wrote it off considering the bad side effects.

After we saw Dr. Chugani in February, we started considering it again as the paper suggested that young age & high dose were risk factors (both of which Lily had when she had the status). I sent an email to Dr. Pearl asking his opinion, just hoping he would write back...and he did! The next day! Amazing. AND he was familiar with Lily, and seemed genuinely pleased to hear from us. He was definitely in favor of trying it again, suggested not going over a certain dose, and that he'd tried it again on several kids with no recurrence of the s/x.

So, we started it again abotu a month ago...and it's been amazing. Lily's seizures have gone way down and we're just seeing an explosion of development. Her attention is significantly better. She'll follow your point to a toy when you have her attention; she responds to her name. She is learning to discriminate between two toys during ABA. It's amazing.

We're still on a fairly low dose with plenty of room to move up. I'm reluctant to though because we have such a good balance of s/x to seizures. I worry that if we moved up on dose, we'd see greater side effects (floppiness, sleepiness) with relatively little benefit. I could be convinced otherwise, and will bring it up at our next neuro appointment.

We had a successful IEP meeting to write the goals for next year. We're lucky to have such a great team working with Lily. I personally think she's going to meet a bunch of the goals over the summer through ABA therapy, but we'll see. We can revise in the fall if needed.

Lily's school is also beginning an inclusion program next year!! I couldn't be more thrilled about this! I've wanted an inclusion program for the early childhoold preschool since we knew Lily would be going there. Two neighboring districts have similar programs, and we seriously considered moving so that the twins could go to school together for even a short while. Well, next year Hank will get to go to school with Lily two days a week! We love his regular preschool so he'll continue to go there three days a week as well. This is likely the only opportunity Hank & Lily will have to go to school together so we're just overjoyed.

I'm also working with the program manager at her school to begin some parent involvement, maybe through an ECE PTA or other some kind of group. I miss that from the Birth to Three days, and I know it can be successful. I'm excited about it.

Tuesday, May 26, 2009

I have much to catch up on...

I have so much to catch up on. Mostly, Lily is just doing amazing right now. She's really exploding with development, and I just couldn't be prouder.

Despite all of that, I've had a relatively low month. I realize that I shy away from posting during the (my) down periods. Having a special needs kiddo is so very, very isolating and lonely at times, that i tend to pull away from everything which just makes it worse.

But my dear friend Danielle reminds me in her post that we need to write about and share it all, because that *IS* life. Life is up and down, and it's not right to just paint a pretty picture of what life with my little epilepsy, autistic baby is like.

So, I'll try to be better about being real.

BUT for now... PLEASE keep my good friend Elaine and her dear daughter Sophie in your thoughts. Sophie is in Detroit havining surgery to hopefully stop her seizures once and for all. She's through the first phase with flying colors, and I"m just so proud of Elaine for continuing to advocate for Sophie, and SOOOO proud of Sophie for being so strong and brave, and proud of her tenacity for fighting this horrible disease.