Mother and Child Reunion

Took me a few days to figure out how to post it (and I'm still not sure if it works, but if not I'll continue to work on it), but here's a video of Noa and Mommy reuniting after three big weeks apart! Daddy did the flight out to Idaho with Noa all on his own (I don't know who to be more proud of!)

Noa only slept for a few minutes on this trip, just as they were landing in Salt Lake. Nearly dozed off here and there, but she is the kid who doesn't want to miss a minute of the journey so she fought it off. By the time this video was taken (4:30pm Mountain Time), she'd been up since about 4am Eastern Time. I don't know where she finds the energy!

We actually have a number of videos of this happy dance - it went on for quite a while. And then she crashed pretty quickly. We have a video of that which I'll post later. It was a BIG day. Not only all the travel - but also meeting up with Jes at the airport in Boise.

Fun with Eddie

Finally a video of Noa swimming with her new friend Eddie. We were matched with this great program through Rusk Institute where Noa does physical therapy - the program, at Asphalt Green (around 90th and York), offers private swim lessons for kids with disabilities. We really lucked out with Eddie. The first session with him, Noa was a bit shy and we could see that Eddie was a bit stumped by a kid who can't see or talk (and who communicates with sign language, which he doesn't understand). But week two it was clear that he'd thought about solutions and/or talked to people or something - and he came in prepared and open to following Noa's lead (which always works for Noa).

This is lesson number 5, and Ben doesn't even get in the pool with them any more. Noa loves Eddie and they've found a level of communication. You can see, he's working with Noa on some swim moves, but in the middle lets her do a jump into the pool - which makes her happy. The sign she is doing on the side of the pool is: Daddy Play. I think she just calls him Daddy because he's a strong guy. She likes strong guys because they can throw her in the air, so yeah, she likes Eddie a lot.

As I'm sure it quite apparent from this video, Noa loves to be in the water. Its really one of her favorite things to do.

In other news - I leave for Ohio on Wednesday, then come back Sunday only to fly off again on Tuesday to Idaho. So this may be my last post for a bit. I'm totally in denial about being away from Noa for so long, but I feel like we're both as ready for this as we'll get (Ben... I don't know if he's ready yet but I know he'll do fine).

Swim Time!

This video is a great demonstration of what Noa can do when motivated! In this example - swimming is the motivation. It takes her some time to get the pants off, but she does it, and as you can see she is really proud of herself too.

Noa has been doing so many great new things - I hate that I haven't been able to keep up with all of them here, but really it's leaps and bounds. It's not just skills, though there have been a lot of those, it also seems to be a conceptual understanding of the world that is really expanding. For example, last weekend we started working on doing her "ears, eyes, nose, chin, mouth - that's Noa!" song with Mommy. At first, even when she found the parts on mommy the song still ended with "that's Noa!" But now she gets "that's Mommy!" or Daddy or Lissa - and she really gets the idea that these are the same parts that she has but on different people - which for someone who can't see is a big realization!

She also seems to understand more and understand more quickly. Yesterday all we had to do is tell her we were going to swim and she sat straight up from naptime and cheered and started to scoot out of bed.

News from Noa-land

This is just a fun video. Noa playing with her favorite toys: blocks. You can see in video that there is a real maturity to her face and her way of moving now. She's really not a toddler anymore! And boy can she throw! She loves to hit different things that make different noises and, of course, she loves it with she hits me and I say "ouch."

I'm trying to get a good video of all her talking but its hard. Like any kid she seems to know when there is a camera and then she clams up. But she is going through a fantastic phase of trying to repeat almost everything: words, sighs, the other day she even repeated a burp. She likes to count along with us: she is great at one, two, three and four but five and seven seems to be problematic (though often hysterical). She is also learning a lot of new signs. I can't even keep up with them in my sign book at this point!

Last week she suddenly became enamoured of this stuffed dog that she's had for over a year (its the first big stuffed animal she's taken a shine to) so we made a sign for him: Big Dog. I taught it to her once and the next day she asked for Big Dog. AND later that day signed that she was a Big Girl - which is huge because its putting together two signs all by herself (I taught her Good Girl and Big Dog but she figured out she was Big Girl).

I'm also hoping to post some video from her swim lessons later today, just have to get it off my phone - but she's doing really great with her swim teacher Eddie.

On a bummer note: got the results from the MRI on my shoulder. Apparently I managed to mess up every working part of my right shoulder (which I only messed up because I was overcompensating for having messed up my left shoulder). Most of it seems like stuff that will heal EXCEPT for the part where I tore my Labrum, which is the cartledge suction cup that holds your arm in that ball joint at your shoulder. Apparently that is one of those things that doesn't heal, and it's hard to strengthen that area enough to really protect it so I'll always have to be careful. Of course, before I can think of strengthening it I have to let it heal. The doctor said 4-6 MORE weeks of not lifting (of course he knows that's not totally possible, but actually Noa's walking is getting better and that helps... also if she collapses, I let her collapse now).

So all this leading to the difficult, but good for everyone choices of leaving Noa here with Daddy while Mommy goes to Idaho in June. Luckily we have a really great support network here and Noa will actually be in school the whole time. Considering how well she is doing there it would be a shame to pull her out. Still... kind of hard for Mommy to fathom. Ben and Noa will come out after school finishes for Noa on June 25th and we'll have some real vacation time then.

Sock It!

Check out this great video that my mom took of Noa successfully taking off her sock - and then celebrating with a giant giggle-fest. We see Noa do this kind of thing a lot lately, but we've never caught it on camera. It's just plain fun with Noa knows she's done something great!

In Like Flynn....

Well, big day yesterday! In honor of that I'm sharing this video that demonstrates Noa's current obsession with dressing up.

We went out to the Blythedale Hospital School in Westchester for Noa's first school interview. Ben and I were nervous because we REALLY want Noa to go to this school! Blythedale is a Hospital School, which means that their focus is rehabiliation. Once a child has been "rehabed" they are sent back to their home school district. Why is this important? Because in the regular public school, the goal is to find a place where the child fits and can best learn the mainstream cirriculum (like the capital of Puerto Rico and stuff like that). Whether or not she learns to walk or communicate is actually less important to these schools... of course I'm sure they'd say otherwise, but point of fact they must tell Noa the capital of Puerto Rico even if she can't understand them or tell them that she'd rather learn how to walk or eat solid food. So.

Blythedale, on the other hand, wants to get her out. They are highly motivated to re-hab her to the point where she can go into a more mainstream situation. What does re-hab equal in a kid that won't "recover" in the traditional sense? That is something that is assessed once she is accepted into the school - they create their own IEP (educational plan) which over-rides the district's version.

The other great thing is that apparently because Blythedale is a hospital placement made out of medical necessity, the school district has to accept her placement (in other words they can't say no... which is basically all they've been saying to us thus far).

SO we were nervous!

We rented a car and drove up - Noa was a bit on edge all morning because she knew something was up. And she was even more on edge the minute we walked through the door because something about the place... she knew it was a hospital. It looks like a school, but I think it has the sound and smell of a hospital. She knew there were doctors around. Everytime I touched her she pushed me away - which she does when she thinks that I'm going to be handing her over to a doctor.

We ended up giving her her zu-zees (electric toothbrushes) to calm her down. And they did, but then she's sitting there in this wheelchair, face down, pressing two electric toothbrushes against her head... so that's not looking so good. And we'd been told that it's really important that they get the sense that a child they accept wants to learn and work hard -- in fact, I'd been gearing a lot of what I do with Noa over the past year to being able to prove this for these very people!!

When we asked what Noa would be doing they said she was there mainly so they could show her around and let her see the school (awkward pause)... hear the school? Luckily the doctor at the interview asked if she could she Noa walk with her walker - and that's when Noa got her chance to shine. Put her in the walker and zoom - she was off down the hall. She started signing with Ben, then she walked back to me and signed that she had to use the potty. She checked out a chair, she just did Noa things and was her totally charming, wonderful, curious self. She is her own best pitch-person - as always.

Phew!

At the end of the day we got the sense that they felt like Noa was a good candidate. She still have to be approved, but we got a really positive vibe from them.

And today -- I kid you not -- Ben got the call that she'd officially been accepted!!!!

This is the best news we could get for Noa. We may still have to fight the Board of Ed to ensure that her IEP is in order when we come back into the district... but at least now we know that next year she'll get the stuff she needs at a great place with great people.

Oh, and no don't have to move, she will go up there on a bus. Doesn't really take any longer than trying to get crosstown in Manhattan.

Noouua

It's been waaayyy too long since my last post, but things here have been crazy mazy (new job for Ben, Jeni as usual on over-load, not to mention Noa transitioning to Kindergarten and fighting insurance companies, etc...)

Even now, I will have to make this short but I wanted to be sure to post some video of Noa talking. Yes, I said TALKING. It has been such a startling and surprsing shift for her. It really started just about two weeks ago. She had been getting more verbal in general - but recently she started to really try to repeat words. She'll try to say pretty much any word at this point. She even repeats sighs. Tragically, she compulsively repeats the sound of Ben blowing his nose - which must not feel good because she bursts into tears afterward every single time.

Some words are becoming quite clear - in this video she says Noa. She is already better at it than she was when I took this - still it sound a bit more like Noooua. And truth be told, most of what she says can only be understood by a handful of her hand-servants. But there are some words like drink or lunch or potty which she will sometimes say without the accompanying sign. She clearly gets that the words are communicating specific things. It's very exciting stuff. Occassionally she will surprise us by repeating some random word quite clearly: rascal, thank you, beautiful. Just once but clear as a bell.

She also has had a rapid increase in signs which she also demonstrates here. She learned water after I showed it to her just a few times. And she retained it. Other new signs include: jacket, bad, 'k (as in okay), stand, want, blocks, walk, poop, brush, gloves, hi, wait and she also has signs for two of her bff's Claire and Lissa.

Unfortunately she still has a tendency to hit and punch herself in the head rather than use the sign for no (which she knows, but doesn't use) - or when she is frustrated that we don't understand her or when she doesn't get her way. She really hauls off and punches herself sometimes and then cries because it hurt. We're trying to work through those moments and help her understand that she can use her signs (no, bad, stop) -- but when she is upset it's hard to teach her these things and sometimes in her frustration she thinks that we're telling no, or bad, or stop and that makes her even more upset. So that is a big challenge.

Quick poop update - that's all much better though it was a struggle to get there. And speaking of poop, no movement (pun intended) with the insurance company. They took forever to send us the form that allows us to dispute their findings (we only just got it). People have asked me if the new health care bill will impact situations like ours. Truth? I don't know. I haven't heard anything that offers protection to disabled children. It's just ridiculous to cut off physical therapy to a disabled 5 year old because she hasn't shown enough improvement. Anyway.... that is a big ball of wax that I can't get started on now. That and the Board of Education. They recently told us that they'd like to put Noa in a classroom with a teacher, an aide and twelve students (no one-to-one para, which is what she has right now). This of course is not only absurd -- not just because she can't sit unattended, can't walk, can't take herself to the bathroom, can't feed herself and can't see or understand any of the lessons -- but also because it would be a huge liability for the school system. It would just not be safe. And so it remains, as always, an adventure...