Gogo Girl!

I know. I know. It's been way too long. Life has conspired against my blogging ambitions these past two weeks - which is a shame because there is so much to report! This video is actually from a couple of weeks ago. As you can see, Noa has discovered the wonder of wood flooring - she can really get some steam up! She doesn't quite make it to the book in this clip - but she does do some nice exploring and perhaps you get a glimpse of how she still really needs to learn how to follow a sound to an object. She is close, but there is still some confusion.

One of her favorite new games - which she demonstrates in the video - is the handing-you-a-bit-of-nothing game. It actually started with handing me a hair from her face, or a bit of fluff off the rug. But it became so much fun that she decided it didn't matter if she actually had something to hand off or not. It's a fun game, and it's one that involves playing and interacting with others which is really a big step for her.

She has picking up some new signs - which is terrific - but also has been getting frustrated about the things that she can't say - which has been less than terrific. Some bad behaviors re-emerge in that frustration: hitting herself in the head, biting her shirt sleeve (many of her shirts have some bite holes in them from this) and, most upsetting, just plain trying to pound her head onto whatever table or floor is in front of her. It's hard to get her attention and encourage her to communicate with her signs when she is in that upset state... but we just keep working on it.

New signs include: play and change my diaper... and there is another one, but I'm just spacing it out right now.

When I last blogged we were about to have a meeting with the school about getting sign language for Noa - which is so so crucial. We had the meeting with the school and luckily, everyone as the school agrees that this is the right path... the only problem is how to approach the school board.

The board really wants us to prove that she has a hearing loss... and we all know she can hear (though what and how she hears are certainly in question). All along Ben and I have felt that it isn't really material because not hearing and not talking are not necessarily connected (google "apraxia" or "aphasia" for more on that). We've also been resistent to the hearing test because they would have to knock her out. BUT at the end of the day, we went ahead and made an appt. for the hearing test (next Wednesday, followed by the dentist on Thursday... poor kid!).

The fact of the matter is that if they can prove a hearing loss - or a processing issue (which may be harder to prove) - then we'll be able to prove the board with what they feel they need. And apparently they have a way to do it now without knocking her out, we'll see if that works.

If they don't have any hearing loss... then we have to go after her having a brain injury that keeps her mute which is very difficult to prove with certainity because there are no tests that can really prove that in the same way a hearing test can prove hearing loss. Just one of those things we just don't know so much about: where does language, and the ability to create and expressive language, come from? Oh so many things we don't know...

Hopefully there will not be such a big gap between posts next time!

Noa's newest sign is "book" - and books are her new favorite toy! What is especially nice is that she is demonstrating an appreciation for touch/feel books, not just books that make noise. We've had this Feely Bug book forever (we actually have six or seven copies because its the best touch/feel book - all the items are different and weird and fun), but Noa has shown only a passing interest. She liked the feeling of turning pages, but never cared for the bugs. As you see, that's pretty much changed.

This is all a part of Noa's increased tolarance for, and interest in, new tactile imput.

In other news, and dispite this very charming video, it's been a tough weekend for Noa. While she is big on asking for the books, she has also recently gotten into this thing where she just signs "more more more more" forever, but never tells us more what. Sometimes she also does this strange jiggling thing with her hands, but we're sure means something to her, but we can't figure out what. I've got everyone on high alert - looking for an answer and we're all trying everything we can think of!

Noa's frustration has led to a lot of whinning a some very high pitched screaming recently - she doesn't even want to use the signs she has at this point, so it's extremely challenging. Usually these periods of extreme frustration are followed by a jump in communication, but that usually doesn't happen until we figure out what it is she is trying to tell us... oh, this is when it would be soooo great to have some support with the sign language!

Noa's Rockin' Birthday!

Well, believe it or not Noa turned 4 this week - and thanks to lots of family and friends and her fav rocker, Uncle Rock, she brought in year four in grand Noa-style!

Noa is a Party Girl with a capital P. Unlike a lot of kids with vision issues, Noa loves big loud parties - especially if they include live music, the opportunity to play along and plenty of fun dance partners. She was thrilled to have her best grown-up play-friends Melissa, Jess and Reshmi on hand, all of whom took turns dancing with her (as did mommy, daddy, Grammy, Aunt Pate & pretty much anybody else she could grab a hold of). It was truly a party of all her favorite things.

I have to say that we were really impressed that even as the party swelled (hey, wow, all those people who rsvp'd really DID show up!), Noa kept going without a single meltdown. She seemed to be in her element, and I couldn't help but think about the communication evaluation we'd recently had and how the evaluated really impressed upon us the idea of getting Noa into more situations that allowed her to interact normally developing kids her own age... that just seems right on.

As the photo on the right shows, we had quite a crowd on hand. But even as afternoon gave way to evening, Noa kept going: notice the blurr in the front of the photo? That's me and Noa - she is a blurr in nearly every photo. See Uncle Rock's guitar far right? He's still going strong too! (Mommy on the other hand is very grateful that Melissa stepped in shortly after this so she could catch her breath).

For about an hour after everyone left, Noa sat on the couch playing and periodically breaking into fits of laughter. Finally she said she was tired, but even in bed she stayed awake for quite awhile - pressing the play button on her music box and drumming along on the bed... in fact, Ben fell asleep before she did!

It was just terrific to see Noa so incredibly happy. In case you haven't noticed from previous entries, this is a kid who works really hard -- and it felt really great to give her the gift of friends and music and motion!

AND thanks to everyone for the gifts! So many! Noa reaches out for new people (especially ones with hands that feel strong enough to swing her), but she is bit more reserved reaching out for new toys, so we've been opening them slowly - just a couple of new toys a day - so that she can really check them all out. I'm happy to report that she is loving everything, which is a great step forward for her! It used to take a week or two for her to warm up to a new thing - but she took right to some items (the music kit with the triangle & cymbals) and quickly warmed up to some others (a big funky pink textured ball).

We all came away from Noa's birthday feeling very lucky indeed!

Stacking

Sorry folks, the world beyond the Land of Noa had me a bit distracted this week. But I wanted to post the video that mentioned last weekend.

What is cool about this for me is the fact that Noa is attempting to stack one block on top of the next. Sure, she isn't bound and determined to do it... but she's got the idea and that's huge!

In other news, Noa's birthday is coming up in about a week. It's hard to believe she is nearly four!! We're also coming up on the three-month anniversary of Noa's stem cell infusion (which is when we're supposed to send a report to Duke on her progress). She's really come a long way in these few months - and we can't help but feel that the stem cells have played some role in it all.

I Love the Sound of Breaking Glass...

Okay, not really broken glass. This probably ages me, and all those who get this reference, but so be it. But lately Noa is really enjoying the satisfying sound of destruction as demonstrated by this video below. And no worries, nothing broken. The interesting thing is, she is purposely throwing this fantastic lighted balls (thanks Grammy) to the side where all her light box toys are stored in order to create that sound. Which, as you can see, she loves.

So, that's fun, but there is news too.

First, we had our evaluation with the behaviorist/communication specialist which was very very helpful. As usual, Noa is her own best advocate. After much talking with us, Noa's teachers and Noa's therapists, a few short minutes with Noa demonstrated pretty clearly that Noa is communicating well with signs and is hungry for more. So now we take his report to the Board of Ed and... fingers crossed.

The evaluator was very encouraged by the various skills that Noa was already demonstrating, things like putting together two signs and reaching out her hands to feel hand-under-hands signs. In terms of her cognitive abilities, I think he is one of the few folks who has walked in the door and immediately seen the kid we see. Of course, a big part of that is that he speaks her language!

He gave Ben and I some important assignments as well: 1) to get Noa into more situations with normally developing kids and 2) to get ourselves into an ASL (American Sign Language) class.

I have to say that a few months ago, I might have poo-pooed the idea of spending more time with normally developing kids: they used to just steal her toys and walk away before she even realized they were there. But this holiday season Noa hung out with a lot of cousins around her age and she really did well - and seemed to enjoy herself. So we'll try to find more opportunities for interaction - frankly, it isn't alway easy to find situations in which Noa can participate with other kids.

As for the ASL - we've been wanting to learn more, what has stopped us is not knowing what kind of sign language Noa should learn: ASL or the Deaf-Blind version (which is what Helen Keller used, and all the signs have to be done into the hand). It's kind of a question of what community she'll be in and who she'll be communicating with. So now we know what to learn. Phew.

I have another bit of video that I'll try to post later but for now... duty calls.

Walking and Jumping for Joy!

A lot of new video this weekend... and a lot of new stuff!

Noa continues to make fast progress in the walking department. We got new braces for her feet last week (after she rather suddenly outgrew her previous braces) but I think they will take a while to get used. They tilt her foot every so slightly to try to prevent her from trying to balance on the inside of her foot... so for now we're just wearing for short stretches a few times a day. Even so, she seems to feel much more balanced in them. As you can see in this video, her latest trick is the one-handed walk.

The way she is walking, with her other hand along the wall, is called "trailing." This is something they do with the kids at her school. It keeps them walking in the right direction and helps them to orient themselves and learn where things like doors and windows are. You can see in this clip that she finds the corner and explores a bit of how it works. In time, she'll learn that if she turns at this corner, she'll be in the bedroom.

We continue to be amazed at how quickly she is making progress on her feet. It's not just the fact that she able to do more physically, it's also that she has a real interest in exploring her surroundings. And this new desire to explore may really be the MOST impressive thing. Frankly, it was not so long ago that Noa would have touched the wall and then just pulled her hand back. But now, if we're walking by a shelf she'll not only touch it, she'll start pulling stuff down... yes, just like any other kid (which is not something we get to say all the time!)

The second video is of us telling Noa that it's bath time... which is fun fun fun! In this clip you can see how exciting it is for Noa - not only to have bath time, but to be able to understand that it's bathtime, and to be able to tell us about her excitement!

It's kind of hard to convey what a huge difference signing has made in Noa's life (and in our lives), but hopefully a moment like this captures the joy of being able to have this very simple exchange.

Believe it or not, there is actually more video to come... but Noa's nap only lasts so long so it will have to wait.

Rockin' in the New Year!

So check out Noa rocking it out at the piano all on her own! Okay, sure, she is leaning on the table a bit, but she does some nifty knee bends to check out her balance a bit. What's really incredible is that she was solid enough at the table that I felt comfortable taking my eyes off her long enough to take this video!

By the by, the squeaking you hear part way through is her "squeaky shoes" - they squeak when she walks and she LOVES them (I got them on Amazon, for those who are wondering).

I'm sorry you can't really see her face in this, but we moved the piano up against a wall so she could to this... so while it doesn't make for pretty pictures, it certainly has served the purpose.

Noa continues to do A LOT more reaching out and exploring. We've created a "map" of her play area, putting toys in different corners (but always the same toys in the same corners) so that she knows where to go to get what she wants to play with. So, she's been all over the place.

Yesterday, I went into the kitchen for a few minutes and she had scooted over to the new piano location and was pulling the thing down on her head. This morning, I went to the bathroom and came back to find that she was laying down by her stroller and pulling it back and forther over her head! (the wheels on either side of her head - the bottom of the stroller is blue, a color that she is attracted to)

She's even making trouble in the walker - getting into baskets on shelves, etc... last week she got ahold of my favorite blue scarf, wrapped it around herself and wore it around the house for hours! We did have one mis-step in the walker, she fell and cut her chin. Nothing serious and she got over it pretty quickly. It was bound to happen, she really throws herself around in that thing.

So, yeah, Ben and I are finally having to get around to that child-proofing thing we hear so much about.