Doin' the Crawl...

The improvements in Noa's walking are exciting and fun, but is the thing that really thrills me: crawling! Noa has never really crawled (and always hated tummy time) which in not unusual for vision impaired kids, so this is huge! Not only does she now have the control to move one leg at a time, she able to orient herself in space and figure out where I am. This makes her - for the first time - a real independent mover! Fabulous... and somewhat terrifying.

Botox Baby!

Hard to believe I'm off to Idaho tomorrow and so far behind (again) on the Noa blog. But I wanted to post this video before I left to share some of the progress we've seen in Noa since getting Botox shots in her legs last week. Yes! Botox! Apparently the Botox deadens the constant firing of the nervous system that causes Noa's legs to stay tight and "in motion" even when she appears not to be moving. You can see that she's really speeding a long here, but the biggest shift is that she's really picking up her legs which allows her to walk with a bit more control (rather than just using her tummy muscles to thrust her legs all crazy-mazy out in front of her as if she were tossing a couple of sacks of potatoes.

The Good, The Bad and the Ugly...

So, the good is the photo - obviously - Ben and Noa enjoying a dip in the pool at Asser Levy on Mother's Day (my Mother's Day gift: watching and taking photos rather than having to get in the pool - not a fan of cold water!)

And to be honest, there is a heck of a lot of good going on. The more Noa is communicating the more she is enjoying her sense of humor - she loves farting and/or burping and then blaming Daddy. She thinks that is just hysterical. She also loves numbers and counting and giving things names and numbers (i.e., Monkey-Mommy-Number 1, or Doggie 2).

We've also had some success with drinking - after more than a year of not drinking at all (How is that possible? Oh, it's possible.) Noa had a cold about a month ago and we noticed that she didn't mind the grape flavored medicine we were giving her so I went out and got the purplest grape drink I could go and now she has 3 sips with every meal (kind of as if it's medicine, but she takes it out of a straw) and she seems to put up with it okay. Sure, it's not what I would have imagined giving my child - but you learn to be grateful for any progress at all.

Now for the bad. The exhausting, mystifying, emotionally wearing bad - I've written before about Noa not wanting us to pull up her pants sometimes after Potty, well this just goes on and on, day after day. It only seems to happen with me and Ben - she has no problem with anyone else - but with us she just goes on and on about wanting to be wiped. We've managed to make some progress in the mornings but only by going right from potty to bath time. Night time is the worst. Of course, she has to go to the potty - and then it can be an hour or more after of screaming and crying and kicking and insisting on more wiping, often along with weird things like wanting us to hold the wipe container with our arms around her a certain way. She insists on standing -- but also pulls on our arms like crazy. We've tried everything - and sometimes stumble upon something that works for a day or two but never really holds. I swear it's like being in a different universe when she's in that place - it's extremely painful to see her so frustrated and so unable to tell us what is happening.

I've done some research on the internet trying to see what it might be. The only thing I've found is that some kids who are visually impaired have a bit of an OCD thing about wiping - and that may what it is... but we haven't found any way to make the situation better. The stuff online didn't offer a ton of solutions I must say - and none of it involved kids who couldn't communicate, so...

Anyway - it's on my mind a lot now because I'm going to Idaho in a few weeks and so I'll be leaving Ben alone here with Noa for a few weeks and knowing that he'll be having to deal with this alone is difficult for me.

The ugly - one night in the midst of one of Noa's screaming bouts - she bit me. She's never done that before - though she sometimes bites herself or bites her shirt (most of her shirts have holes in fact) so she may have been trying to bit her shirt and got me instead but it was ugly! Broke the skin and left a bit black and blue mark.

Normally, I wouldn't write about this kind of yucky stuff or even talk about it much - Noa is doing so many great things and I tend to focus on that. But this stuff is exhausting. Just plain exhausting and demoralizing and I think it's important sometimes for me to acknowledge that.

So that's my story tonight. Now I'm going to eat some food because I'm hungry!