Last week had a great visit with Grammy and Grampy - Noa loves hanging out with, and bossing around, her grandparents. Noa taught them a lot of her new signs and showed off all her new skills. She counted things for them, and told them when she was finished with things (even when she was finished with them - I keep telling her that just saying good bye is plenty, you don't also have to add "finished" but she seems to get a lot of satisfaction out of it). 

Below is a photo from a few weeks back, but since I didn't post it then, I'm posting it now - a visit from Melissa and Lilia! Lilia has come over a few times and it's really a treat for Noa (and for me!) Lilia is cute as a button and she can really hold her own with Noa - which is saying a lot. Lilia really liked the dolly she is holding, so we gave it to her (Noa doesn't care for it) and she named it Noa. So so cute.

In other news, we've been working with Noa on dramatic play (playing with dolls and a doll house, etc.). While we've only had some mild success getting her to play our games, it seems like she is getting the idea. We have 2 toy monkeys - to differentiate them I started calling them Monkey and Monkey-Shoes (because one has shoes. Then one day Noa told me that Monkey-Shoes was Monkey-Daddy. I asked her if the other one was Monkey-Mommy and she said yes. So that was actually kind of huge - she's never done anything like that before (either naming her toys - I usually name them - or referring to anything other than Ben and I as Mommy or Daddy).

We now also have Doggie 1 and Doggie 2 (which is great because Doggie 1 is in kinda bad shape at this point and I was afraid we wouldn't have anything in the back-up position). Below Noa is enjoying gifts from Grammy and Grampy - she is getting much better with trying out new things especially if they are similar in some way to something she already loves - for example, these are sort of like gloves.

Look At Me Go!!!

Okay - now for some news that is good and totally NOT strike related!

Thanks to the folks at school, Noa was able to see a wonderful doctor to access the issues with her legs and feet. Noa had been having some cramping issues - which have happened in the past during growth spurts - but these were pretty dramatic and there was a fear that it was impeding her progress we'd made with walking. The folks at school were wondering is botox (yes, botox) might help.

This wasn't the first time I'd hear about this, it deactivates the nerve that sends the message to tighten the muscle (so it kinda makes sense). A lot of kids also get tendons in their leg actually snipped to relax the legs. I'd hoped to avoid these things, and with massaging Noa was been mostly okay - but frankly, seeing the discomfort she was in it seemed like it was time to entertain more aggressive options.

The doctor was really wonderful and I felt very comfortable with her assessment. She wants to do the Botox but can't do it until May - so until then she wanted to put Noa on a muscle relaxant which we started about two weeks ago. The shift was pretty much instantaneous. The photo here is a bit misleading in that Noa isn't totally walking on her own - she really needs the two walls - but dang that's a big difference! It actually means that she has to work a bit harder to keep control of her legs. But she pretty quickly realized that things like jumping, for example, are much easier when your knees are soft.

Also in the bonus category, we found this great kids pharmacy that was not only able to make the medication into a liquid, it also was able to make is any flavor! (we picked chocolate), so it's not a struggle to get her to take it.

Strike Fun (?)

So just catching up on a few items from our adventures during the strike -

We did have one "snow" day during the strike. Noa has rather famously disliked snow forever. It's cold and it's just... everywhere! But we keep trying to convince her that's fun. The only thing Noa seems to like about snow is sledding. When were were at Grammy and Grampy's it's was great because they have hills. Unfortunately for us (and by "us" I mean Ben) we just have a long flat garden - and so Ben, like a pack mule, pulled Noa back and forth in a sled we borrowed from another kid. Noa still hated the snow and as soon as it was clear that Daddy was finished pulling her around she was ready to go in.

Other fun during the strike - my MLK heart scare turned into a series of appointments and the discovery of my seriously high cholesterol levels and a realization that I had to do a better job of taking care of myself overall (as soon as the heart stuff was resolved, I got shingles - I think my body is sending me a message).

But health aside, the BIG lesson for us from the strike is what a delicate house of cards we've constructed to make our lives work. Years and years of near constant battles with the Board of Ed, with Medicaid, keeping ourselves in sitters and therapists and doctors, getting wheelchairs, leg braces, standers, walkers, bikes, canes, fighting for ASL, researching CVI; all of it so carefully set in place with each piece stacked one upon the next, but it only takes one missing school bus to blow it all apart. It gave us a lot to think about, and it was a pretty harsh reminder of what happens when there is a hole in the social safety net.

I will admit that it left me feeling rather disappointed that during an era full of "occupies" of every variety nobody could be rallied to action (or even to remember the plight of) so many kids like Noa who were kept home and missed not only school but medical and therapy apts, and their parents (some of whom lost their jobs during the strike). I did try a couple of time to rally some energy - I put out missives to the "occupy" community - nothing. I would look at my window overlooking First Avenue - just packed with cars - and wonder over and over how it could be that we can't get these kids to school.

Getting back on a regular school schedule has been a bit of a challenge. Noa got used to getting up later, and there wasn't really an urgency about missing the car service - but the bus, it doesn't wait around like that! So morning have been a bit of a challenge. And - as happens with any disruption - there is a bit of a backslide. Mainly it's just that having so many new people around allows Noa to get more bossy; she gets used to people who don't totally understand her so she figures out how bend them to her will. Smarty. But we're slowly but surely getting back on track. It's been quick a winter. Let's try not to do this again!

Long Time....

Wow, I can't believe how long it's been since my last post! So much to report, but let's start with Noa's most recent appearance on NBC - our post-strike interview:
http://www.nbcnewyork.com/news/local/School-Bus-Strike-NYC-Union-Meeting-191437101.html

Throughout the strike, I kept in touch with Pei-Sze Cheng, who interviewed us for the first piece we did on the eve of the strike, so it was fitting that I found out about the end of the strike when she called to tell me that she'd heard the drivers would announce an end to the strike that evening and asked if I want to make a comment. I told her this was the first I'd heard of it and she said "well, then I guess I am bringing the news." Funny! As you'll see, Pei-Sze actually didn't do this interview, but it's a nice piece and Noa really got to be the star in this one (though if you understand ASL you'll see her signing "poop" quite a lot. She'd just gotten off the potty, but I like to think of it as her own commentary on the whole affair).

In terms of the money we put out, we still are waiting for some of that to be re-paid. We were recently told that the City decided it would only pay back $200/day; which I told them wasn't going to work for us since they never told us ahead of time of any limit, and actually there is no way to get a wheelchair car to and from Westchester every day for less then that (if they wanted it to cost less they should have provided it). ANYWAY, they now say that was a "mistake" and that they'll pay us the rest. We'll see. As I repeatedly told the woman who called me, they'll pay us. They can do it now, or they can do later after a big pain the butt, but they'll pay us.

Of course the really funny thing is that after this interview, the folks at NBC made sure to let us know that if the City did give us any trouble, they'd like to know about it... so maybe another spot in the future if they don't pony up. They also haven't given us any answer about reimbursing the cost of having someone take Noa to school on days when we couldn't. So, the strike is over but remnants of it still linger like a strange after taste.

Also, props to Ben - during the interview he tried his darnedest to get out a message about where parents could go for help getting reimbursement, but NBC didn't include that in the spot. The thing you really learn is that you're there to play a role - as soon as they left I told Ben my "Christmas Miracle" comment would make it and I was right. That's the part of the narrative I was there to fill. And though they wanted to know if we had trouble getting money from the City, actually providing information to help parents get that money was not a part of the narrative for this story. Not a complaint really - because I'm grateful for the opportunity to get the story out at all - just an observation.

In any case - it's over for now. The drivers say the strike is "suspended" not "over" - but I think that depends on what the next mayor does. They realized they would get nowhere on this, and the "agreement" with the Democratic candidates was mostly a face-saving move that allowed them to go back to work without feeling like the thing was for naught.