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...

Poop and other stuff that stinks

Poop

10:30 on a Saturday and we're just in from a night out... at the pediatric E.R. We are fortunate have a pedatric E.R. about a block away - and we're fortunate because this is the first time we've had to use it! The issue: severe constipation, so if you are weak of constitution, you might want to skip the "Poop" part of this entry.

Of course constipation is nothing new to Noa, and it is a problem for lots of special needs kids especially those like Noa who cannot walk and therefore she just doesn't move... everything around like your average toddler who can run circles around circles. All her adventures in new foods probably add to the problem: bits of pasta or rice krispies, etc... so this was just worse than anything we'd experienced before.

Noa has a high tolerance for pain so really what we noticed was that she was sitting funny and not wanting to stand and sticking out her belly - and finally Saturday morning, she just wouldn't sit up or bend at the waist at all. We tried valiantly to get things moving, but my Saturday evening - after a day of leg moving, tummy massages, rocking chair adventures, a bike ride and a bath, it was clear nothing was moving.

An x-ray showed that indeed there was a "blockage" - and actually we were lucky that it wasn't bad enough that they had to call the surgeon. One enema later we were on our way home with a tired, but slightly more comfortable Noa. We still have four days of enemas to go. Lucky us.

The thing that stinks
I haven't written about this before, but we've been an ongoing battle with Noa's insurance to cover physical therapy. She's on a Medicaid waiver - specifically designed to make sure that people with disabilities get the healthcare they need regardless of income. At first we were fine with this new set up (through Medicaid we went into a program at HIP of NYC).

At first, it was a bit of a pain as they made me renew her PT perscription every month which meant calling her GP and asking them to fill out the paperwork and send it to HIP for approval and then they'd send a thing to the PT... a lot of work for someone who will likely be in PT her whole life. When I called to ask if they had some arrangement for disabled people (which is what the medicaid waiver is really there for) she said no - that she might get better and so they couldn't do that. When I told her Noa's situation she said - and I kid you not - "there are miracles. I have seen miracles."

At that point I asked her to stop talking. I assured her that I'd call them if there was a miracle. Frankly if there were one, I wouldn't waste my time bilking Medicaid, I'd be out with Noa dancing at a different club everynight until our feet hurt. In any case, it hardly seems like a monthly renewal in case of "miracle" was a sensible business model - though perhaps it explains why healthcare is so expensive.

ANYWAY - a couple of months back, HIP changed it's process and hired an outside company to assess the needs of patients seeking PT. This company (we'll call F) requires the Physical Therapist to call and request the renewal (rather than the doctor who is perscribing it, but who also is not someone who is an administrator and is in fact rarely at a desk because she is with patients!). After initially approving a month of visits, we were reduced the following month to 3 visits. The PT called me and said she had seen this before and that she suspected they were going to cut her off... and viola, they did. Because she hadn't improved enough (over the course of a month and a half), so obviously it wasn't working.

Silly people at "F" - they have no idea who they are dealing with.

We called and asked for a review of the situation. They said they could review it and perhaps get us 1 or 2 more sessions. We informed them that this was not going to help - that the issue was bigger. That they were denying services to a disabled person with the criteria that she should "recover" - which did not make any sense for a disabled person, much less a 5-year-old who is learning to walk.

AND NOW, after their "review" they have decided to give us 2 more sessions - their logic being that in those 2 session, the PT could show me the exercises that Noa needs to do and then I could do them with her. TOTALLY not getting that these are not exercises to recover from some injury at work - this is a child who is learning to sit and walk and who is blind and there is not one set of "exercises" for that.

Oh poor poor people at "F".... they do not know who they are up against. I just want to call them now and say (as I have to others before), we are not those people who are going to let it slide, so you might as well just give it to us. Going this route will only cost all of us lots of money and in the end you will not deny services to a 5-year-old blind disabled child because it is WRONG. And, if this is your practice (as it seems to be) then we'll do all we can to make sure you don't do it to anyone else.

So... that's the story of poop and other things that stink. We'll keep you updated.

Noa's Rockin' Birthday!

Once again, Uncle Rock rocked it out for Noa's birthday (the Noa equivilant of having Van Halen play at your party)!

It was a great fun with lots of kids to share the rockin' out with. Despite our best efforts, Noa didn't take a nap earlier in the day and at first I was afraid she wouldn't be able to pull it together, but true party girl that she is - after a short break with her calming electric toothbrush - she came back strong.

Happy Day

Don't be afraid if the video screen looks blank, as far as I can tell this video will still load if you hit the play button (let me know if it doesn't).

Here's Noa signing "Happy Day" - she just learned this on her birthday and I think she really likes saying it because the "Day" part (with the big slapping action) is particularly satisfying - I really like the triumphant Susan Boyle singing in the backgroud. She also is working on the sign for "Poop" and "Fun."

It continues to be a mystery that she doesn't use the sign for "No." We actually had some success with it at Music Therapy the other week, but it hasn't really translated into home use. She still tends to push the offending article away and then scream or hit herself (on the hand, or banging her elbow on a table), or both. But she does know the sign. She just hasn't really figured out the power of it - which I think she would enjoy, and I would be sorry she ever learned it (but hey that's the way with any kid once they learn the power of "No").

In another twist - Noa has started to show a preference for certain clothes - many shirts. If you try to get her to take her shirt off, she will resist until you let her touch the shirt you intend to put on her. If she doesn't like that shirt she will push it away (and scream and/or hit herself), but if you select a shirt she likes, she will offer you her arm so you can help her get the old shirt off. Lately she seems not to like waffle knit shirts, which is a same because I got a great deal on a bunch of them recently.

Hard to believe that tomorrow Noa will be 5-years-old!!! And she's really been piling on the skills in the past couple of weeks to catch up with her new status as a "big girl." Especially impressive right now -- food skills such as those demonstrated above. Notice how she finds the spoon. She is careful looking for it, and you get a sense when she is doing this that she is usually visual imput in some way. She is in the right area and really searching for the right spot. This is true even if I move the spoon slightly. It's not a "blind" reach, so to speak.

I love that in this clip she also reaches for the spoon for the next bite, though her sense of having to scoop more onto the spoon is just developing. Actually, she was doing this at school before she did it at home. Ben happened to be at the school for a meeting and saw her doing this - and her cover was blown. In this respect, Noa is just like any other toddler - she knows who expects what from her. She used to pretend that she couldn't pull up her pants when she potty time with Daddy... until he happened to see her do potty time with Mommy. Tricky kid.

PLUS, she's been eating more and more new foods. Just in the past week and a half she had baby food mixed with rice krispies, more pasta varities and... are you ready??... cheeseburger (fed through a food mill) mashed up with french fries and topped with a little baby food. She loves meat flavors so top most anything with a meat flavored baby food and you're good to go. She's doing well with all the stage 3 baby foods (that have chunks) which used to make her gag and even ate a whole jar of a fish flavor (salmon with wild rice). It's really a whole new world!

As we're coming up on her birthday, I guess I should share a birthday story - just a short one. As most of you know, Noa was adopted, but Ben and I got to know her birthmother ahead of time and were lucky enough to be there for her birth. In fact, when one of her friends came down sick, I ended up being one of the birthing coaches and Ben even cut the cord. But that's a different story -

For a variety of reasons, Noa's birth was induced - which gave us a great shot at being there for the actual event. Five years ago yesterday we went in for a final ultra-sound and discovered that Miss Fancy had somehow turned herself around and... basically facing the wrong way. "Go home," the doctor said, " and we'll try again next week." Of course Ben and I were disappointed - to be expected - but Noa's birth mother (we'll call her B) wasn't taking next week for an answer. Although the doctor said there was no way that Noa would turn around by tomorrow, B convinced her that we should just go to the hospital on schedule and take another look - and then she and I got to work tracking down all kinds of crazy old wives tales about getting babies to turn over.

We tried a few things - can't remember most of them but one was playing head banger music to the area where her head was so she'd move away from it. Ultimately it was a bag of frozen peas that did the trick. We put them right where her head was and within a matter of minutes she flipped right over -- and I mean it was a dramatic move. We could see it happen! So much for the doctor's theory that babies didn't turn around like that. When we went to the hosptial we were feeling pretty confident that Noa was in launching position... and she was. The rest, as they say, is history in the Land of Noa.