Wrapped Around Her Finger...

So this is what happens when Daddy gets up with Noa in the morning. I come in to the living room, after having enjoyed an extra hour or so of sleep to find that Noa has convinced Daddy to hold not one, but two, vibrating massagers on her head while she leans back on him as if he's a Barca Lounger and chugs some Pedisure, hugs her fav stuffed horse and flips through a book. In fact, in the picture to the far right, she is even asking for a kiss to top it all off! Not bad for a kid who can't speak!

Sure, Daddy's a push-over, but Noa's powers of communication have found some new and creative outlets. Later this same weekend, she went to the pool with her fav swim-buddy Jess and taught her the new pool-signs she had come with. She told Jess she wanted to "sleep" when she wanted to float on her back; that she wanted "drink" when she wanted to be thrown in the air (which means that she dunks her head and gets a mouthful of pool water - yummy); and "pick-up" when she just wanted Jess to carry her around the pool. There is a great logic to this - and it seems to re-enforce what the guy who did our communication evaluation thinks which is that her communication issues are not cognitive, they are about not having the language tools she needs. But she sure came up with some creative solutions. I wish I could explain to those of you who have not spent tons of time with Noa how she manages to teach us these things but everyone who works with her has experienced this.

In other big news, we've laid out a plan to get Noa off the bottle, as I like to say. This has been tough because she won't put anything but a bottle in her mouth. The plan - to start in about two weeks - is to go cold turkey. No bottle. I started talking to her about this about a week ago - that she was a big girl and almost finished with the bottle - and we started to introduce a new straw cup that she would very politely hand back to me every time I gave it to her. Then much to our surprise, this weekend, she let me put the straw in her mouth. I squeezed the Pedisure into her mouth and though she didn't love the idea, she put up with it. Yesterday with Melissa, she used the straw cup a few times (though Melissa had to squeeze it for her) and today she was taking the straw happily and sucking through the straw herself. This is great because now we have some time for her to get used to the idea before the "mamba" as we call it disappears completely.

Good Clean Fun!

Whenever I see Noa playing with water like this, it's hard not to think about "The Miracle Worker." Of course it makes perfect sense that "water" was Helen Keller's first word - water provides so much imput! Noa has been big on washing hands for a while now (she does sign for hand-washing), but this new trick is fairly recent and quite a funny and ingenius way to get the water into her mouth. Strangely, while she'll drink water from the sink or a shower or the swimming pool (try as we may to stop her) she absolutely will not drink it from a bottle.

Just to update on the signing situation - the doctor put Noa on a 2 week course of Claratin to try to clear out the liquid behind ear drum, so we're working on that. In the meantime we've gotten a preliminary report from the audiologist which we hope will be of some help since it basically says that Noa doesn't respond normally to their tests (which require the subject to LOOK at the noise, or turn toward the noise, which of course she doesn't do but perhaps it'll be enough for the Board of Ed to give in). The audiologist did mention that Noa communicates with sign and that if she knew more sign language they'd have better luck testing her. So, thanks audiologist so trying to make the point for us - any little bit helps!

Ben and I were to start our sign language lessons last Tuesday, but we had to re-schedule so we're starting this Tuesday.

IN OTHER NEWS my mom recently sent me a link so some information about a really cool theater group called Nalaga'at that does theater with the deaf-blind. It's run by the same folks that run the famous restaurant Blackout in which all the servers are blind and the restaurant is entirely in the dark. Anyway - this theater group blew me away!

They are working to convey the world as they experience and have come up with fantastic ways to do create theater that speaks to their experiences. As one might imagine, I've thought quite a bit about what theater for the blind would be (not just descriping what happens, but making the experience more involved). At the end of the day, I think this is theater for the hearing-sighted by the deaf-blind... but I think it hold a lot of things that would be great if you were deaf or blind or deaf-blind and it certainly helped my thinking about it. Anyway, I invite... no encourage... you to check out clips from their performance. It's way cool: http://www.nalagaat.org.il/en/

Onward....

So yesterday we took Noa for the much anticipated hearing test...

Pretty promptly the audiologist found that Noa had some fluid in her ears - more in the right than the left - that would make it impossible to the ABA Test which would tell us if she had hearing issue due to nuerological problems.
The fluid in the ears is not unusal for kids.

BUT now we have to go to the doctor to see how they want to deal with it - there are apparently a number of options, including some kind of lancing of the area to release the fluid which is something that would require sedation. Noa sees the the doctor today, so maybe we'll learn more.

They did try to do at least one of the tests. They put the kid in a sound proof room and they have toys placed around the room that make noise and they see if the kid turns to look at the toys... um... okay... I'm guessing that most of you are already seeing how this test isn't going to work for Noa. She doesn't turn toward sounds. Why would she??? Though she is learning to turn in the direction of who she is talking (signing) to. And she is learning to hand things in the direction of the person she is handing something to.

We explained our situation to the audiologist who - like EVERYONE in the universe who has met Noa - felt that the audiological test should be immaterial and that it was clear that sign language was her mode of communication and that her being mute could have nothing to do with hearing. Yes, yes, an ever-growing choir preaching to itself!

In any case, the audiologist will write up a preliminary report and hopefully it will be at least some use in moving forward since it will say that they couldn't do the test because she didn't respond to the sounds by looking.

Noa took it all like a champ. She hated having things in her ears and she screamed her head off but she didn't fight me and didn't pull the things out - and hey, if I thought I could get away with screaming, I'd do it a lot more often to. Then after putting up with all that I had to pull her out of school today to take her to the dentist (more screaming, but otherwise well-behaved and the doctor was very happy with our tooth-brushing work)... and when she gets home we take her to the doctor to look at her ears. What fun!!!

The photos above of are of Noa signing one of her new words "play."
Oh - and next week, Ben and I officially start working with a sign language tutor!

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.