Rough Day in The Land of Noa

Well, a rough day in the Land of Noa: Noa's first trip to the emergency room. Considering the fact that she is 4 1/2, I think that's not so bad really!


She got pushed off a chair at school by another child and hit her mouth & chin on the floor - her teeth cut the inside of her mouth (and tore that little bit between the top of the gums and the lips - you can feel it with your tongue on the top of your own gums, yeah right there). There was a lot of blood at first, and a lot of crying and a trip in an ambulance - which I think she was too upset and finally exhausted to enjoy.

The little red mark on the bridge of her nose isn't from the fall, but she does seem to have a bump just below it which is from the fall. We'll be seeing some black and blue, no doubt.

Noa was a champ at the hosptial. She cried when the doctor looked in her mouth, but I told her it would only be for 10 seconds, and so she put up with it as well as could be expected.

So apparently, this kid in her class likes pushing kids. Normally he picks on a different kid but his M.O. seems to be pushing kids that are easy push and if he gets a big reaction... all the better. So I'm guessing that Noa is now on the top of this kid's list. Luckily, the there was already a plan to meet with the kid's parents about his behavior - so that's already going to happen. I could tell you all more, but for privacy reasons I'll just leave it there. That particular kid aside, we were concerned about Noa being in chairs without arms because of her lack of balance... and this incident just exemplifies why.

So, Noa is home and fine - pensive, but fine. Fat-lipped, but fine. Exhausted, subdued, but glad to be out of the hospital. These photos are from the trip home. Looking at her face it's almost as if you can see that's she had one of those "growing up" experiences where suddenly the world feels just a bit less innocent and care-free.

Hands

Okay, trying again to upload the video of Noa playing with Grampy's hands... and success!

You can see how she really takes her time exploring every aspect of his hands. And she'd already been doing this for some time before my mom started taking the video.

I've been reading Helen Keller's autobiography, which is a great read by the by - that woman had the MOST amazing memory, and it's been very help for me just in terms of understanding how important these moments of connection are for her, and how thrilling!

Noa feels things that we don't notice. She gets more from feeling someone's hand than we can probably imagine: she knows people by the veins on their hands, and boy she can find a nerve and push on it (in fact she finds this very amusing as it always gets a reaction). Of course it's not just hands. You can take nearly any toy of her's and touch it to any part of her body - and she knows which toy it is. You can tap nearly toy of hers on a table and she knows which one it is.

Long story short, once she gets to know someone's hand, she gets the same thrill from that hand that we might get from seeing a favorite person walk into the room. So learning grampy's hand is a great investment in future happiness!

Biker Babe!

Okay, okay - a lot of posts in one day, but so much to report! Check out Noa on her fabulous new bike which she got thanks so a special program through Rusk Institute to get bikes to special needs kids (thanks Julie for making it happen!)

As you can see Noa LOVES her bike! In fact, she learned the sign for bike in about 1 minute flat!

The pedals move when the bike moves (unlike the tricycles we've tried in the past) so that she learns that moving her feet makes the bike go - and it's great exercise for her legs. There is a bar in the back that lets us steer it.

She loves the little tiger's head which squeaks when you squeeze it - and there is a little purple bell on the side of the handle bars that she is getting the hang of. The only problem with the bike is that it is soooo cool that all the other kids on the playground want to ride it - and it's tough to explain that we can't let other kids ride it. I'm sure we could do it with one kid or two, but the playground is packed with kids and this bike is too expensive and frankly, not for climbing on... so tough to be cool and popular.

In other signing news -- Noa has been signing up a storm!

She learned the sign for different in the matter of a few days. She uses it when she wants a different flavor of food - we'll start trying to use it soon for different toys, or different music, whatever.

She's also been very interested in signing letters - not that she knows what they mean, but she gets that they are meaningful. In Arizona Ben was doing some letters into her hand and she would feel the letter very intently and then try it with her own hand. I've been singing the alphabet song to her while signing the alphabet for her and she really enjoys that - and spelling her name into her hand.

If you think about it - we all learned the alphabet song without really getting what all the letters are for (which kind of explains the "El-eh-meno-pee" section which eventually learn is L-M-N-O-P) so her trying it out is just like any other kid trying out sounds or fun songs without worrying about the meaning.

Though in Arizona she did learn the sign for swim - until we'd just used the bath sign, but as I learn more, I try to help her learn more as well.

Today, Melissa signed "I Love You" to Noa and Noa did the sign back. It was pretty darn cute!!!

Noa is VERY clearly interested in more signs -

AND as she becomes more interested in signs, she is making more sounds as well. She continues with the "j-yes" and this week we got a lot of "nice" and "in-dee." But rather than making us feel like we should focus more on speech, it makes us feel like we should continue to focus on the signs - because those are what gets her attention, and the sounds, if they do come, come after and seemingly as a result of having learned a sign.

Arizona Dreaming...

In the last post, I mentioned being on an airplane with Noa - Ben had a play in a festival in Arizona so we packed up the family and headed south for a few days. As it turns out we picked the hotest week of the summer: 115 degrees on Saturday!!! If you're wondering if Noa sweated in Arizona... we really didn't have a chance to find out because when it's that hot out, you're just not outside long enough to find out. And we certainly didn't want to chance it by over-heating her in that kind of weather as an "experiment."

But we had a great time - as you can see from the video. This is the swimming pool at the condo the theater put us up in. Yes, we're outside. It's 7:00am in the morning (and already about 94 degrees).

This clip shows one of Noa's favorite pool games: toss Noa! You can see that she makes the sign for "drink" - if she does this in the pool, it means that she wants to be tossed. Somehow Noa came up with way to convert her signs into pool games - and taught Jes - and Jes taught us. "Drink" makes sense for this game, as she gets to dunk her head all the way underwater.

Noa also really enjoyed the Children's Museum in Phoenix which is hands down the BEST Children's Museum I've been to. A lot of sensory stuff (like things that blast air in your face, or the entire forrest of pool noodles you can walk through). Noa loved that! And of course, Noa loved the plane ride.

Cute Cousins and Sweating the Big Stuff

Okay, so just had to share this great video of Noa with her oh-so-cutie cousin Elecktra who came to visit about a week ago. Notice how Noa rubs her arm! There is something so gentle and grown-up about the way she explores other kids... a lot of the time is sort of freaks other kids out, but Elecktra is as patient as one can expect a kid to be, especially when surrounded by the Land of Noa noisy toy collection!

It was at about the time this video that something quick strange began to happen... Noa began to SWEAT! What's the big deal about that, you ask? Well, until now, she didn't sweat at all - yeah, yeah, at first is sounds great, except that sweating is how our body cools down so NOT being able to sweat is a dangerous condition and even more so for a kid who doesn't talk and can't tell you that she is hot. Of course it's easy to tell - if you're looking at her - because she turns bright, bright pink. But if you're not looking (for example when its 90 degrees and she is on a school bus full of kids), it can be a bad scene.

We were told that not being able to sweat is a condition caused by some glitch in which the sweat glands are "turned off" in some way. There is no cure or fix for it, so if you have this condition you just have to stay cool.

SOOOOOO about a week and a half ago, I went to check on the sleeping Noa (something which we do on warm evenings because she tends to get overheated and isn't able to regulate her body temp --- so sometimes she's pretty pink). I looked at her and she looked fine. Then I touched her forehead and it was damp. I felt the back of her neck... also damp. It felt like sweat and I can't tell you how shocking that was. I called Ben and he felt her head and neck and then we were both perplexed.

It seemed so unbelievable to us, that we told ourselves it was some kind of mistake. Maybe she drooled on herself? Or maybe she was still wet from her bath (even though it had been well over an hour). The next night - it happened again. When I mentioned to our sitter, she reported having had the same experience - and like us - thinking she must have been mistaken.

On the flight to Arizona earlier this week, Noa fell asleep with her head on my lap and when she got up the sweat from the back her head left a wet spot on my pants -- since we'd been watching her the whole time, we knew it was the real deal.

So. What does this mean? That those glands suddenly turned on? And how? Or why? Does that happen sometimes? Could the stem cell infusion have contributed to this? We don't know at this point. And so far we've only noticed it happening in her sleep.

It's hard to explain how exciting it is to think that she may be able to sweat. But it indeed BIG stuff!

Jee-yea!

I've been trying for a few weeks now to upload this great video that my mom took of Noa playing with my dad's hands out in Idaho... but for whatever reason I can't get it to work. SO instead I'm sharing more of Talya's great photos of Noa, cuz hey, they're great!

Noa has been been busy since our return from Idaho. She just returned to school for the summer session and I think she's grown about a foot! Seriously.


One of the most exciting new things Noa has been doing is saying "yes." It's kind of a game right now and she only will play it with a few select people (mostly women for some reason). She'll sign for "drink" - then I ask "Noa, do you want your drink?" She will say that something that approximates the word "yes."

Sometimes it is clear as a bell, other times it's more like "jeyea" or "yessse" but it is clearly a vocal response in the affirmative and that is HUGE.

Overall she has been doing a lot more vocalizing and occassionally will astonish us with something that sounds quite clear, but is often also totally random such as: "sludge," "Hezzbulah," or "Hindi." I guess she hears the news a lot...

Another fabulous new trick is walking while holding just one hand - she is big on this now. She's not very stable so it often involves falling or swinging rather wildly into someone's legs, but she is determined. She also likes holding one hand and pushing the stroller with the other - we've done some rather long walks this way.

The big recent event for Mommy and Daddy was taking the 4th rail of Noa's crib so she is now in a big girl bed (with a lower rail). While it was a bit nerve wrecking for us the first few nights, it's overall great because now we don't have to pick Noa up out of the crib which was becoming... back breaking. In fact, with help, Noa can get out of bed and walk to her potty or to breakfast (of course she doesn't always want to... but who does?)

And she had fun, fun, fun ---

So here is just a small selection from the many wonderful photos that Jes took of Noa in Idaho. As you can see, she's loving it all.

In the top left photo, at the hotsprings, it's actually raining and she has her mouth open to catch the cool raindrops. Cool rain in a hot spring... that's a nice combo! It's especially nice because as you can see she is getting a bit red. Here's a little known fact - Noa doesn't sweat. Apparently some folks don't and she is one of them. Yeah, it sounds nice until you consider the fact that sweating is what cools your body down when you're hot, so we have to be careful about her not getting overheated, so this rain really came just at the right moment for us!

The next photo (on the right) shows Noa playing with her water table in our back yard (not bad for a back yard).

Below we have the hip rock star by the lake with her walker. You know, just chillin' - and next to that Noa enjoying a relaxing shower back at the cabin. I'll post more Idaho photos in the coming days, and hopefully some video too.