Friday, June 25, 2010

Overheard from the backseat

Some of Julia's best language comes while we're in the car. Granted, we're in the car a lot. Whether it's going to and from school (she and Daniel are both in summer camp), to and from speech, physical or occupational therapy, to and from the gym, the farmer's market, the grocery store, it seems like we're always on the go.

Today on the way home from school I heard "Why is Daniel's shoe off? Why is Daniel's sock off?". I was beaming from ear to ear. The sentence structure! Amazing! We got home and sure enough, Daniel had taken one shoe and one sock off, leaving the other ones on. I'm getting a lot of "why" questions from her these days which I love. She's always been more of a factual kind of girl, happy to point out what's going on around her but never really questioning why. Now I'm getting "why why why" all the time...and of course now I'm encountering the familiar parenting frustration that usually ends up with "I don't know why, it's just the way it is!"

Another backseat gem...Dora the Explorer is HUGELY popular in our household right now. Not only does she want it in constant rotation on TV, but she wants her Dora blanket, Dora backpack and Dora book while she watches. Dora went swimming on a recent episode and Julia ran upstairs, put on her bathing suit and came down to watch the rest of the show. Daniel even has jumped on the Dora bandwagon and adorably says "Oh man!" when Swiper appears. So the other day, in the car, what do I hear from the backseat? "Uno...dos...tres!" See, who said TV wasn't educational.

Medication wise she is doing well. We are now in the stage of the Vigabatrin wean where she's only taking 250mg morning and night. She hasn't been on that low a dose since she was 18 months old. I have a love/hate relationship with lowering her dose, to say it puts me on edge is an understatement. No seizures have been noted but I still haven't let my guard down and don't know if I'll ever be able to, quite frankly. In the first few days after this dose decrease I was worried about some behavior I saw upon waking. Her right leg was twitchy and the timing and look of it was too similar to what we saw with her seizures for comfort. I emailed Dr. C about it who suggested an EEG (groan), talked to her local doctor who said it was probably not a seizure since she was fine otherwise (better), and after a few more days it went away. So whether that was the right approach or not is debateable but so far so good.

So that's what's going on lately in our world. I will try and be better about updates, I know there's a lot of people who are rooting for our girl and I don't want to leave anyone hanging.


Sophie's Story by Elaine said...

The language...I LOVE it. Sophie's big thing is "where". And Dora is HUGE in our household too. I wish we lived closer so we could have a little Dora party with the dolls, books, figurines, sippy cups, pjs, toothbrushes, the list goes on. Do they really make that much Dora stuff and did I really buy all of it ;)

I hope the wean continues to go well. It sounds like you made the right decision in "wait and see".

Krista said...

So glad to hear that she is doing so well. Yay Julia!

happy's mommy said...

It's about time you lazy bum! :) LOOOOOVE LOOOOOVE LOOOOOVE all the happy moments!