Ride 'Em Cow Girl!

Noa had a great time at this year's Halloween Parade in her Cow Girl Costume!
Noa loves her Cow Girl outfit - from the first moment I tried it on her she understood that it was special and she jumped up and down and did her happy dance song (which is basically yelling).


Noa was so excited to walk around in her costume that she walked the parade route twice! She did the whole thing once before the parade had even started!
Noa loves being the mix - all the people and the laughing and excitment - she is really a "girls just wanna have fun" kinda girl. One of the things that is really nice about our building is that so many people know Noa and everyone was so impressed to see her walking so confidently. She got a lot of cheers and compliments and you can really see that it energizes her.


Kudos to Melissa who suggested Noa go as a cow-girl, Andrew who helped us get Noa ready and joined us for the first spin around and Jes who taught Noa how to say something that is sort of like "Trick or Treat" and "Boo!" We did take Noa to a neighbor's door. She said her version of Trick or Treat, selected a piece of candy and threw it down the hall.

Then we went down the hall where they have a huge Halloween Party every year. Although she's done okay at this party in the past - this year she was thrilled to be there. She did her happy dance (with screaming) and gave Ben and I big happy hugs.

Verdict? Best Halloween Ever!

A Blip on the Road of Life

Hi Everyone! You may have noticed that The Land of Noa has been somewhat silent lately. The truth is that events in the The of Jeni have overtaken my ability to keep up with this - and that will probably be the case for a few weeks.

Long story short, a few weeks ago diagnosed with very early stage, non-invasive breast cancer - having surgery on November 15 which may be followed by radiation (will know more once they get a chance to really look at what they take out). Of course this is all happening very fast and has left me scrambling to take care of things in the real world... while the virtual world just kinda hangs out waiting for me to catch up.

In addition to having them remove the Cancer, I'm also having a breast reduction. Why post this in the Land of Noa? Because actually, I've been dealing with some really bad shoulder pain for a year now due in great part to all the lifting and working with Noa and my orthopedist had actually already mentioned this as something that might help me - so it seems to have all come together to make this the right choice for me.

In terms of how this affects the land of Noa - the biggest, most immediate impact will be that after surgery I'm not to lift her for a month. This is difficult. Sometimes when I talk to people about the challenges of a physically impair child they say, "oh I know, little such-and-such likes to be picked up too." But truly, its just a different ball of wax when you have a 40-lb child who cannot get out of bed herself, cannot get from her blocks to the couch. Not only did it ultimately get me to the point of serious injury, it also means that to replace me for a month we have to pull together a small army of new Noa BFF's and HUGE thanks to all those folks who have stepped up. It is no small deal!!!

Noa BFF's have to do three days of training to be able to hang with her (kind of like training to work at Chili's). They have to learn her signs, how to stretch out her legs when they hurt, how to not hurt themselves picking her up and moving her, how to make sure she gets some exercise and how to make sure she doesn't hurt them (because throwing blocks at people and slapping them is a much favored game right now). So kudos and thanks to those brave souls!!!!!

My biggest concern is that she has been having a lot of discomfort in her legs. It started when she outgrew her leg braces and it's taken a long time to get news ones (we hope to have them next week). Without the braces, she doesn't walk as much - and the braces keep her hamstrings stretched out. Walking keeps her hips stretched out. When she doesn't get to walk enough, her body just doesn't send enough blood to the legs so they crap or get pines and needles - or - something - honestly we don't know what. She can't tell us so she screams bloody murder (seriously, I'm waiting for child services to show up - its like she is being stabbed) and thrashing around and we just try every stretch we can think of. Of course, I won't be able to help with this soon so I'm really really hoping the new braces come soon and that they help this somewhat. As you can imagine hearing your child scream in pain for an hour is challenging enough without the extra bonus of being entirely helpless in terms of even trying to help!

SO that's where we are this week. I have actually a blog now for my own upcoming journey:
www.carepages.com/carepages/jenimahoney
I suspect that most of my posting for the next few weeks will be on that site. Also, Ben will be able to update the site and let folks know when I'm out of surgery, etc...

Thanks to everyone for all their help!

All Work, All Play, Means Noa Has A Busy Day!

I can't believe September is nearly over! And look at Noa, she already looks like a big kid with her pig-tails. She doesn't usually keep them in for long - as with most of Noa's games it's more about asking you to put them in and then asking you to take them out. She continues to enjoy finger toys, and now we have some rubberbands that have also become finger toys.

In this photo Noa is doing the sign for work, which she learned at school. Noa's transition to Blythedale has been just great - she really loves it there and is already thriving. They always warn you, especially with special needs kids, that they will probably lose some ground in a big transition like this, but that certainly hasn't happened in this case - and it's a big change and a long day. Noa leaves for school at 8am and she doesn't get home until 5pm! But she comes home totally happy. She even seems to like her bus driver and matron, and Noa's teacher Meredith said that some older kids on her bus were asking about Noa's zuzees - the electric toothbrushes she likes to play with - and she introduced Noa to the other kids and showed them how to understand her and they were really into it.

I have to really commend the folks at Blythedale for really taking the time and making the effort to work with Noa on her terms. They are a rehabilation school, but not a school for the blind (though they have other VI students and a wonderful VI teacher, and as it turns out there are other VI kids in her class) - and we were a bit concerned about Noa being in a class with kids who could see, that she would be left out or just sitting bored (or screaming and hitting), but they've done a great job of including Noa and she's made quick and wonderful connections with her teachers and therapists.

In fact, when Ben and I were there for Parents Day Meredith was reading a book to the kids and even though Noa couldn't see the pictures, the teacher and the aids helped her figure out how to do the activities that went with the story, and as a result Noa really seemed to be trying to listen and understand - she got that this story meant something, and seemed to really be trying to figure it out.

I also wanted to share a bit from a wonderful note that Meredith sent home with Noa the other day, it truly brought a tear to my eye because it's such a wonderful testament to how well Noa is doing:

"There are some new students joining us and Noa has taken on a leadership role to demonstrate our activities to them. She was very happy all day!"

Family Fun

We had a great time this weekend down at Grammy and Grampy's house in Maryland! As you can see, Noa is having a great time playing blocks with Aunt Leusia, sharing her toys with her cousin Elecktra & doing sign language with Aunt Pate.

It was actually the first time that we felt like Noa really was able to be a part of the playroom action. She really seemed to love the energy of being in the room with the other kids and all the ruckus of cousins running and laughing and throwing things (Noa being the queen of throwing things).

Noa's cousing Abby invented a new toy for Noa - little rings made out of string - that Noa absolutely loved. We decided to call them "finger toys" (I've been trying to think of names for toys that will help Noa learn the alphabet and F is a letter she doesn't know yet and one that is very specific). Noa learned the sign in one shot and asked for them consistently all weekend - and all the way home. When she is motivated she is fast!

Also, because Noa's signs are becoming clearer and her ability to communicate (i.e. her patience) is deepening, she was really able to communicate more clearly with her Aunt Pate who actually knows sign language, and that makes a HUGE difference - not only for the two of them but for me and Ben as well because we felt very comfortable leaving Noa with the family while we went out to our friend Matt's surprise party.

All the way home, Noa signed for Grammy - which was very cute. She really enjoyed spending time with family and she's really starting to have wonderful, special and individual relationships with everyone which is just lovely.

Rock On!

So yesterday we decided to check out this new playground down at South Street Seaport that was supposed to have all sorts of creative interactive stuff for kids. It's always hard to know if these places are going to have stuff for Noa, but we figured the bus ride would be fun and if nothing else we could go down by the water and feel the breeze.

As you can see from the video, it turns out it the place was a real success and Noa had a great time in spite of the fact that she really couldn't play with most of the stuff there. Nearly the entire playground is in sand, which is great for most kids, but not for kids in wheelchairs and not kids who can't really walk (sand is hard to walk in), so we carried her into the sand but as you'll see if you go to the "Toss On!" video below she had a great time once she was in the sand.

In this video we're making good use of the foam blocks which are actually kind of neat.

Most of the stuff required being able to see and appreciate that you could put sand in this or that and then pully it over here or there; or stack these big foam blocks into a maze you could roll a ball in... stuff like that. But the great thing about where Noa - and her current sense of adventure - is that she really seemed to get that we were someplace special where you try new things and she was very open to that and she likes the sound of other kids playing and all the ruckus that goes with the playground.

And of course, we took her out on the Pier when we were done at the playground and she loved the wind there - wind is one of her favorite things. I was concerned that she might get cranky leaving the Pier (it was getting on 7pm by this time), but luckily the streets of South Street Seaport are cobblestone, so the fun bouncing helped to make up for the lack of wind in her hair. All in all, a great family outing!

Stomp On!

One of the cool things about this nifty boardwalk that created kind of a half-circle around the playground was that it had a little give to it. Not much, but enough that I think it gave Noa some fun feedback when she stomped on it. She's pretty sensitive to that kind of thing. She walked the entire boardwalk holding onto the rail with one hand, and Daddy with the other.

Toss On!

Toward the end of the summer session, Noa's teacher told me how much Noa liked playing in the sandbox when they went to a local playground and I was surprised. We had tried sandboxes in the past, and had been to a few beaches, and Noa never really went for it so this playground - which was covered in sand - was a great opportunity to see for myself if she really like it. I think the video speaks for itself.

We will be working of getting the sand out of our hair, off her wheelchair and out of the house for a while I think. She was really generous it.

Thank You Tooth Fairy!

So Noa's officially a big kid - she lost her first tooth the other day. Just spit it right out.

Here she is with her new best friend Rover celebrating the fancy red hoodie the Tooth Fairy brought for her. Although Noa has in the past been somewhat suspicous of new things, she was very eager to try on her new hoodie, and once she had it on she insisted on wearing it for the rest of the day and even slept in it! Boy, the tooth fairy sure knows Noa!!

Rover is My Co-Pilot

After our great success with Rover yesterday, I just thought I'd give him a spin this morning and see if she was still attached. She did sleep with him, but when she woke up she asked for "Doggie" (a different smaller toy that she usually sleeps with).

So after breakfast I asked her if she wanted Rover and she signed some approximation of his name (it's a difficult new sign for her but she was close) and when I gave her Rover so was so excited - it was even better than block!

I swear to you, I did not put Rover on her back like that. SHE did it! She asked for piano and brought him with her and after some work flipping him about she finally discovered this solution on her her. Smarty!

Red Rover Red Rover send Noa Over!

As I think I've mentioned, it can Noa a while to warm up to a new toy, and when I say warm I mean red hot! This doggie was a birthday gift from Grammy and Grampy back in February and yesterday was his lucky day!

What is really interesting is that she seems to get that he's kind of like a dolly. In fact, that is was the sign she used for him at first. I decided we should give him his own name and used the opportunity to pick an "R" name because its a letter she doesn't know yet and would be totally difference from her names for any other toys.

As you can see, once she got her hands on him we went everywhere - even potty time.

Memories....

Before we embark on a new school year at a new school, I thought I'd share some of these great photos, provided by Luz at the Jewish Guild, of Noa having fun at school.

Today we took Noa up to her new school Blythedale to do a bunch of her intake stuff. She did great and everyone at the school was impressed with out she'd grown (both physically and in terms of maturity and comfort-level) since the last time they'd seen her in the spring. I was impressed that

she took me that she had to use the potty and then even managed to use the giant grown-up potty without her kiddie seat! And she was really very patient with them checking out her legs and her eyes and all that doctory stuff. Gosh she made us all look good!

Then we took her to one of her favorite places: Wal-Mart. Yes, Wal-Mart. Well, basically she likes anyplace with shopping carts. We're looking forward to school starting on the 7th!

Noa Explores the Deep Blue

Okay, finally some swim-time action!

Here Noa demonstrates how eager she is to swim on her own.

Actually, one new thing she really enjoyed this weekend was swimming back and forth between Ben and myself. We'd give her a good launch and then she'd paddle a bit and get very excited to find us. It was very cute and she really got that she was going from one to the other (something she really doesn't get the same way if she is walking - though maybe this will help). Here I think she is trying to tell Ben that she wants to play this back and forth game. She probably is launching off of him thinking she'll find me.

She was very independent in the water this weekend and because the water was warm we could be in the pool for long stretches. We were in for over an hour and a half on Saturday afternoon (after having already done an hour in the morning). We'd usually start in one of the cooler pools, like this one - a shallow pool that she can actually stand in plus it has the cool waterfall, and then when she started to get chilly we'd move to the heated pool. She was often so tried by the time we got out that she'd be jumping up and down in the water with her eyes closed (probably some combination of chlorine and exhaustion). Once or twice we even suspected she was dozing off mid-jump, then she'd shake it off and get back to work.

The only downside was that by the time we'd get her out of he pool, showered, changed and ready to have a snack she was usually pretty much out of patience and a bit screamy. Still she put up with it all very well.

Noa Wobbles But Gets Back Up!

Murphy's Law being what it is the wireless didn't work at the hotel for the rest of our visit, but now that we're home I'll try to bring this up-to-date in bits and pieces because there is just a lot to tell. It was a great weekend! Noa did great work and had great fun, and so did we grown-up types.

This video shows Noa falling, yes, but doing it so well! I guess it's also the first video I've posted with the canes in action. We're actually on the lawn outside our hotel room which wasn't the easiest surface to navigate but it forced Noa to really pick up the canes and her feet (she tends to be a dragger - in fact she wears out the toes of her shoes first).

Note how she tries to regain her balance (rather than just falling like a plank), and although Ben helps to slow her fall somewhat, she manages to get her weight more center and put down her knee, thereby staying upright (rather than just shutting her eyes and waiting for the impact).

The other wonderful thing - which really says a lot about Noa - as soon as she has a hand free she signs that she wants to stand-up again. Totally undaunted, and in fact very happy with herself.

I have to run for now but there will be more later today - for reals!

Vacation!

So here we are, dinner, our first night at Mineral Springs Resort and Spa. Well, appetizers really. Noa was so exhausted that we just did the app's there and took the rest back to the room to avoid a rather public meltdown.

I didn't get a photo of us in the incredible (and seemingly Noa-designed) landscape of indoor and outdoor pools, but I'm sure we'll be there tomorrow and I'll get plenty of photos then. It was really a Noa dream-scape. Indoor pools with waterfalls, a heated outdoor pool (for mommy), some hot tubs and jacuzzis around the edges, a playground of giant sprinklers and pools we haven't even seen yet! Noa was so happy - and exhausted - I think she was falling asleep in the pool even as she was signing "more more more." One lady looked at her a bit concerned and said, "she looks dazed."

"Oh, she's just pool drunk," I assured her. She didn't seem terribly assured.

One fun, interesting fact: when we got here I got Noa out of her wheel chair and we walked around the room touching everything - the bed, the coffee table, the couch. Noa got very happy, I think she got that we were on a vacation and she did a whole jumping/happy yelling/dance about it. She was really really happy. I think she new it was going to be fun.

I'm sure there will be more to report tomorrow. Swim, eat and go to sleep was about the sum of it today.

One Giant Step...

Check out Noa with her new Quad Canes!

She has been working with these at Rusk for a while now, and she finally got her own nifty red pair for at home thanks to a be-lated Christmas gift from Grampy and Grammy. We tried to get them through insurance but she got turned out (and as we also learned, they usually only approve one if they approve any... which in Noa's case would be totally absurd)

As you can see she really has taken to them.

Of course, they are huge in terms of our efforts to get Noa walking on her own, but they have done a lot to improve her balance. She used to just fall like a plank, but now she can use the canes to try to find her balance on her own.

Me and Dolly

Here is Noa with her new best friend, we think her name is Ari (which I think is her way of saying Dolly). Noa has had this doll for a while but didn't show much interest. A few weeks ago I starting using the doll to sing a song with Noa where we count fingers and ears and eyes. Recently she started to understand that she could do the song with us - touching our fingers, ears, etc... so I thought that might help her understand what the doll was meant to be.

Se liked doing the song with the doll, but would usually do it once with me and then push the doll away. Imagine my suprise this morning when I looked out from the kitchen and saw her sitting on the floor hugging the doll. The doll has been an almost constant companion all day. If I ask her to hug her, she hugs her. She totally seems to get it. Very cute.

Rock On Pre School Grad!

While Noa didn't care so much for all the talking in the graduation ceremony, but she totally dug the after party - rocking out and visiting everyone, walking, walking, walking and laughing when the big boys started popping balloons.

More Graduation Day Fun!

Well I haven't been able to post any of my video from today, but while I'm figuring that out here's a few more graduation day photos.

I do have a video (including the ear-busting sounds) of Noa doing her giant scream, but until I get that up, enjoy this (silent) photo of her screaming. The other two photos show the solution to screaming, Noa's terrific sign language teacher Maddie. She came up to Noa when their was a break in the action and as you can see, Noa is really paying attention. She calmed right down, and since Maddie also really gets Noa, she gave her a blue scarf so she could do her "Our Lady of Graduation Day" routine.

Class of 2010!

Check it out: Noa walked to her seat in her pre-school graduation today! Seriously, that in and of itself is remarkable and something that - on November 17, 2006, when Noa started at JGB - I never would have predicted. When we started at JGB Noa was 18 mos old and couldn't sit up by herself yet and I think she had two signs: finished and swing. PLUS she managed to wear that blue sash for the whole ceremony!

15 kids graduated in Noa's class, and as wonderful as the morning was everyone was pretty broken up by the fact that this would be the last graduation for the pre-school which is shuttering for good next week. Interestingly, ABC usually covers the graduation as a feel-good story but they weren't there this year. Can't help but be annoyed that they didn't show up when the kids really needed them to get the word out for them. They just liked it as a feel good story.

ANYWAY - I was very honored to be one of two parents to speak on behalf of the parents, though because it was all so emotional it was also difficult.

Noa made her presense know throughout by screaming her brains out whenever the clapping and/or singing stopped. But other than that she did great - they all did great! It was pretty remarkable that they could get any 15 toddlers to hold still that long!

Thanks to great uncle Vani for the dress Noa is wearing - he brought if for her from Hawaii a few months ago and it was the perfect graduation gown. After the ceremony there was food and jumping around and balloon popping and all vareity of great kid things.

The JGB has been a huge part of Noa's journey. We're really going to miss it and and all the people there so much. While I can be glad that Noa got through the program all the way until graduation, I can't help but think about the kids who now have to find other programs at

this late date.

Our Lady of the Big Girl Potty

Thanks to her own innate modesty, I am able to post this photo of Noa demonstrating her skills on the big girl potty.
As usual I have gone a long time between posts and so find myself posting a whole series of photos and videos on one day (5 today, which might be a record).
It's be very busy in the Land of Noa - but we finally seem to have cleared things with the Board of Ed in terms of Noa's placement for the fall, and have an IEP in place which on the advice of my lawyer (Ben) I will not talk about except to say that it is truly mind-boggling how much paper can be generated and how many people must be met to discuss one 5-year-old child. No wonder she thinks she's the center of the universe!
We've also been busy with the bus company that transports Noa to and from school every day. I'm sure Ben would also suggest that I not blog about that -- although I will say that we've had days where it seems to take them nearly two hours to get her from Central Park West and 65th to 30th and First Ave (the district does have rules about how long you can keep a kid on the bus: 1 hour and 15 minutes). So that's been another fun summer game.
And lastly, there is Medicaid. We're trying - once again to get Noa on straight Medicaid while similtaneously desputing charges with her current Medicaid HMO which - as you may recall - decided that Noa didn't need physical therapy because it clearly wasn't working (after 9 or 10 sessions she wasn't walking, so must be a lost cause). The way it works in NY is that once you're on Medicaid they want you to join one of their HMO's that manages your care. Straight Medicaid is for those who can't be served under those HMO's.
Couple of funny (not funny) things in this:
1 - We selected this particular HMO because it was the only one that covered the place where she gets PT. Even now, we couldn't use their rejection of her as a reason to be on straight Medicaid because on paper, they say they cover that program even though they actually have no allowance for people with a permanent disability... which is why we went on Medicaid in the first place.
2 - I discovered (quite by accident) that our HMO does have "case managers" for people with chronic or complicated medical conditions. I called and talked to one and she told me that they just give advice and her advice was to continue with our dispute - that we had to prove that the PT was "restorative" because there is no allowance for disability. I still have no idea what that woman's job really is - though she was nice enough and told me that she hears these stories all the times from parents of disabled kids.
ANYWAY - the other posts are much more fun than this run down of what we did with our summer vacation. Hope you're all enjoying yours!

Too Much Fun

Okay, here is one just for fun. The two dancing flowers in front are, yes, singing "I Got You Babe" by Sonny and Cher. A gift from a friend of the family a few years ago that Noa continues to enjoy - if you hit the flowers, they start singing again. The animal noises come from buttons on the book she playing with. As you will see, she also continues with the blanket theme. We have two Tinkerbell blankets and they are her clear favorites: the texture, the color, the size, it just seems to work for her.

This also includes one of her other favorite activities: books!

Now don't get too excited, she's not reading them (though many include brialle so she can get used to touching the words). She likes to create a breeze with the pages. But we sneak in feeling the letters here and there. We also have some blocks with brialle letters on them (thanks Amy Saltz) that she likes to throw - she'll feel the letters a few times, then throw the block. Again, we're just sneaking it in.

FUNNY STORY: so Melissa is on the elevator with Noa last week at school, and Noa is playing with her electric toothbrushes (which she loves). She finishes with them and hands them to Noa and says "Thank You." This Dad on the elevator turns to his kid and says "why can't you be nice like that?"

and a one-a and a two-a...

As I've mentioned before, Noa has started trying to copy sounds and words. Sometimes, if she is feeling confident she'll skip using the sign completely (though right now book and drink sound an awful lot alike which can be the cause of some serious heartbreak).

Here we have Noa counting with me to 10 - and then doing some great playing. The video includes a lot of her favorite stuff. Anyway, we've been using counting to 10 for transitions for a long time with Noa so she's been listing to these numbers for a long time. Counting is helpful for kids with all kinds of special needs but has been particularly helpful in our case because Noa can't see the cues that might let her know that something is about to finish (like mommy packing things up, or that we're getting close to the chair where she's going to sit). It gives her ome time to get herself prepared for what is coming next.

As you will hear, the numbers can get pretty creative. Numbers with hard sounds, like three, eight and ten tend to be easier than numbers like five and seven that include sounds that are softer or smoother. I think she just likes the way it feels to say two. But the interesting thing that we don't quite know is whether her difficulty with some sounds is a difficult in hearing the difference between the sounds, in making the sounds, or some of both. I suspect some of both, though more and more I think she has trouble telling the difference between sounds when she hears them and sometimes gets more from the tone and intention of a sentence than she does from a singular word.

Signs of the Time

Okay, its always a bit of a mess format-wise when I try to upload more than two photos in a single post, so we'll see how this works.

The point of all these photos being that Noa is signing up a storm and hungry for new words every day.

In this post we have blow kiss, proud, smart, dance and funny.

Home Again, Home Again

Home a week now and Noa has transitioned by to Big Apple life with her usual gusto - already back in school, back to therapies, back to throwing blocks around the apartment dramatically and then laughing hysterically.

Believe it or not, we've already had one meeting with the Board of Ed here, still getting things in place for Noa's transition to a new school in the fall. We're feeling good about the direction things are going, but it is astounding how much paper and how many meetings are generated by one tiny whirlwind of a girl!

In other school news, I just learned that the Early Intervention Program at the Jewish Guild for the Blind (where Noa has been in school since she was 18mos old) is closing after the summer session. Of course we're relieved for ourselves that Noa was just at the point of transitioning, but frankly this is devastating news for the blind community in New York/New Jersey as it was one of only two programs for blind/VI toddlers (the other is the Lighthouse for the Blind which has a program that includes non-VI kids: a boon for toddlers with milder VI, but extra challenging for severely VI or blind kids like Noa). And of course, all these lovely people who have been central to Noa's development will be out of jobs as of August.

Noa's newest sign is "nice" and she is working on blowing a kiss. Her feet are growing so fast that she literally seems to have skipped a half size! In general, her legs have been changing alot - they are just sturdier as a result of all her walking. They used to look kind of spindle-y, but now they just look like legs (she actually has calves now!)

The photo above was taken by Talya Arbisser, Noa's personal paparazzi who happened to visiting NYC and stopped by to visit us and take some (as usual) great new photos. Thanks Talya!

Thank Yuuuuuu...

Well, back in the big, super hot apple already but wanted to share this last video from the vacation: finally got Noa doing her "Thank Yuuu" game with some foam blocks I picked up at the thrift store in McCall for two bucks.

Noa did great on the ride home - and even slept for part of the second flight! Actually, what happened was that Ben and I got bumped up to First Class, which was great for us (it really is just a more humane way to travel) - but it was weird because Jes and Noa were stuck back with the unwashed masses. We switched around a bit, but then the fates smiled on us in a big way and about half way through I was able to talk Noa and Jes into First Class and wouldn't you know it, she settled in and dozed off in a matter of minutes. Guess she was just waiting until they recognized her true place.

Noa had a great time in McCall, and though her sleep is still a bit off, she has made an amazingly smooth transition back to NYC and already had her first day of summer school today despite the record-breaking heat.

Burgdorf

For those of you who haven't had the pleasure of visiting McCall, Idaho, I thought I'd include this video which gives you a bit of the grand scenery that surrounds Noa up here. This is Burgdorf Hot Springs - one of two hot springs that we frequent up here. The water this day was particularly hot. It's probably around 99 or 100 degrees in the water and in the mid-50's outside at this point - which is about 7:30 in the evening.

Noa and Jes are in the kiddie part of the pool which is shallow enough that Noa can stand. She had a great time, eventually ended up just sitting in a floaty by the end of the visit because the water was too warm to stay in for too long (see video below).

Yummy

After all the excitement of Trampolines and such, a girl needs a good meal, so here is a video of Noa feeding herself. She is doing a great job of finding the spoon and returning the spoon to the bowl (which is really the tough part). While this may seem like a simple bit of stuff after all the excitement of her other new skills... this one is particularly special for Mommy who has wondered if the time would ever come when she could sit down and have a meal with Noa that didn't involve feeding her as if she were still an infant!

With both the feeding and the potty training, Noa seems to be taking the lead. She knows she is doing something good, so she likes doing it. She also loves saying Thank You - I'll get that on video - I know I should really enjoy this moment of enjoying being polite!

By the way, as you're watching this video - you may notice the lag time between when I ask Noa to take the bite and when she actually does. You may also be able to see her sort of looking for the bowl. She really seems to be taking the time to figure out where things are.

Lady Loves A Tramp

So just in case you're asking yourself: what kind of fun is Noa having in Idaho? Well here is just one example... Noa's first time on a trampoline adventure thanks to our fabulously generous neighbor Kathy Borkoski. Kathy's place is across the street from us (which, being McCall is still about a 5-8 minute walk) - they also have a great swing-set that Noa loves too. But this was the really big fun yesterday.

In other fun - Noa has been a walking machine since arriving in McCall. About the only thing she will sit for is a bag of foam blocks that I got for her at the local Thrift store. They don't make big noise like the blocks by home, but she can throw them at herself which is nearly as much fun. She has also enjoyed standing and feeling the wind, rocking out the Hot Springs, and the rocking chair on the porch with Daddy, and just being the in the car with windows down so the wind blows in her face. Noa is a study in the simple pleasures.

Jet-Lag Lady

Okay, so if you haven't watched the previous video (Mother and Noa Reunion), you might want to look at that one first. The enormous enthusiasm Noa showed when we first arrived on our porch was followed pretty quickly by this: serious done-in jet lag. She'd been up since 4am New York time, taken two exciting plane rides, had one screamy meltdown, dozed off for a moment, then the excitement of meeting up with Jes at the airport in Boise, the drive up to McCall and Mommy... so yeah, a full day.

One big piece of news about the trip: on the plane Noa told Daddy twice that she had to use the potty and Ben (saint that he is) actually carried Ms. Gy-normous down the aisle to the airplane potty where she dutifully made the trip worth his while!

Anyway, as you can see here she is practically asleep already. She made it to 6:30 mountain time, which would have been past her bedtime in NYC by half and hour, so can't complain.

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...

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.

Shake it Up!

The most recent delay in my postings has been due to a very sad (and we hope not too tragic) event, the complete crash of my hard drive which will tomorrow undergo the computer version of heart surgery, so keep your fingers crossed!!!

But I'm so glad to be back on the blog and able to share this great video with you all today - it's actually a couple of weeks old: Noa enjoying the heck out of the blocks that Grammy and Grampy gave her for Christmas this year.

She also likes throwing them, so I don't think we've had all 50 in the box since the New Year. As you can see she loves to shake shake shake until they are all gone and then she starts all over again. She seems to get the idea that they are somewhere near enough to find and so she'll reach and roll around to find them as best she can. It's part of a whole new level of independent play that includes pulling books off shelves and opening cabinets and pulling down baskets. Makes a mess, but it's good fun and it's great to see Noa really reaching out and finding things rather than waiting for someone to come along and give her something to do.

That's Noa!

Okay, so this video really doesn't have anything to do with the story that inspired this posting, but I'm glad that I remembered I had it because it's a lovely clip of what was a real treat for Noa: Daddy at Music Therapy. As you can see in this video, Noa is doing a great job of playing along with this song - she really likes this one!

But the big news this week is that Noa actually ate some toddler mac and cheese this week (thanks Claire!). Of course it was covered in babyfood Chicken flavor (her favorite) which helped. There was a lot of screaming the first time - but she managed. And then today, I tried (I tried to break the pasta in half so the pieces were probably about the size of a pea) - and through there were some funny faces, there was no screaming, and no gagging. And she really seemed to be proud and happy when I told her what a big girl she was. She didn't chew the pasta, but it was very soft - a few times she seemed to move it around in her mouth. But just to allow it in... huge!

It's difficult to explain what a huge deal this is! Noa will be five in just a few weeks and this is really the first time we've seen her take on anything what wasn't pureed.

Alot of visually impaired kids don't eat solid food - sometimes the reasons are clear, sometimes they are not. And many of those kids will NEVER get past pureed food. There are also many VI kids who end up on feeding tubes because they are so adverse to solid food - or because they can't get enough nutrition from what they are willing to eat.

When Noa was younger, we were told the tube was an option because for a while we weren't sure she was getting what she needed - she was soooo adverse to eating. But kids who go on feeding tubes, often don't get off them because... hey, would you? If you don't like eating and you can get all your nutrition from a tube? So we battled through that one and as much as we suffered over the fact that she wouldn't eat solid food no matter what we tried (and we tried everything!) we were always grateful that we never had to do the feeding tube.

SO considering all this - getting some pea-sized soft toddler pasta in the mouth and down the throat without gagging, screaming, barfing (which trust you me, we've seen a lot of over the years) is truly miraculous.

Circus Circus!

Noa had her first trip to the circus last week: The Big Apple Circus at Lincoln Center. We went with her school - the circus does a special needs kids performance and Lincoln Center is just about 2 blocks from school so it was about the easiest field trip in the world.

It was hard to get a photo of Noa in which you could really get a sense of the Circus - we brought her in her wheelchair so just were just parked behind the regular seating. But it was quite a crowd and kids of all ages with all kinds of disabilities.

At first I was bummed because I didn't want her stuck in that seat unable to really play with me, or bounce in the bouncey circus seats - and the wheelchair tends to tilt her back. But actually turned out really well. As soon as the lights went down I just stood Noa up in front of me - cause there was live music and I thought she might want to dance... and dance she did!!! Through almost the entire circus! Thank goodness Noa's one-to-one Emma was with us to switch off with me because my shoulders are still not in the best shape.

Unfortunately Noa wanted to face me most of the time. The first time I tried to turn her around she kind of paniked and grabbed onto me. I think she was afraid I was going to give her to someone else or make her do something she didn't want to do (like get a shot). But towards the end, when she was tired, and convinced that this was a fun trip, she turned around... and then she discovered the metal railing that really moved if you shook it. When Emma and secured the railing so, she went on to pulling the velcro'd signs off the railing. Yeah, sure, it's not the best kid behavior. But it sure it NORMAL toddler behavior and so to perfectly honest I was quite proud of her for making normal kid trouble.

Toward the very end, she sat on my lap. In the final big number she seemed to be looking around and taking in the lights a bit... so we just got about 7 or 8 minutes of using her vision but I think for her that was plenty. When it was over, she took it very well. She learned the signs for "fun" and "circus." It was an all out great adventure!

Bringing it in with STYLE!

Okay, last one today, I promise.
I just couldn't resist.
I don't even have anything to say about this one...

Happy New Year

Just thought I'd post our 2009 Holiday Greeting on the ol' Blogisphere. The photo taken by the ever fabulous Talya Arbisser (otherwise known to Noa as that nice lady who makes the clicking noises). She was in town just before Thanksgiving and took this photo of Noa enjoying the Ball Pit - her reward at the end of PT session.

The print is kind of small:
"There are two ways to live your life,
One is as though nothing is a miracle.
The other is as though everything is a miracle."
- Albert Einstein

Of course one of the truly joyous things about Noa is that she really does live her life as if everything is a wonderful miracle, and hey at the end of a long day of school and PT... a moment of giggly solitude embraced by colorful plastic balls? Yeah....