Botox Baby!

Hard to believe I'm off to Idaho tomorrow and so far behind (again) on the Noa blog. But I wanted to post this video before I left to share some of the progress we've seen in Noa since getting Botox shots in her legs last week. Yes! Botox! Apparently the Botox deadens the constant firing of the nervous system that causes Noa's legs to stay tight and "in motion" even when she appears not to be moving. You can see that she's really speeding a long here, but the biggest shift is that she's really picking up her legs which allows her to walk with a bit more control (rather than just using her tummy muscles to thrust her legs all crazy-mazy out in front of her as if she were tossing a couple of sacks of potatoes.

The Good, The Bad and the Ugly...

So, the good is the photo - obviously - Ben and Noa enjoying a dip in the pool at Asser Levy on Mother's Day (my Mother's Day gift: watching and taking photos rather than having to get in the pool - not a fan of cold water!)

And to be honest, there is a heck of a lot of good going on. The more Noa is communicating the more she is enjoying her sense of humor - she loves farting and/or burping and then blaming Daddy. She thinks that is just hysterical. She also loves numbers and counting and giving things names and numbers (i.e., Monkey-Mommy-Number 1, or Doggie 2).

We've also had some success with drinking - after more than a year of not drinking at all (How is that possible? Oh, it's possible.) Noa had a cold about a month ago and we noticed that she didn't mind the grape flavored medicine we were giving her so I went out and got the purplest grape drink I could go and now she has 3 sips with every meal (kind of as if it's medicine, but she takes it out of a straw) and she seems to put up with it okay. Sure, it's not what I would have imagined giving my child - but you learn to be grateful for any progress at all.

Now for the bad. The exhausting, mystifying, emotionally wearing bad - I've written before about Noa not wanting us to pull up her pants sometimes after Potty, well this just goes on and on, day after day. It only seems to happen with me and Ben - she has no problem with anyone else - but with us she just goes on and on about wanting to be wiped. We've managed to make some progress in the mornings but only by going right from potty to bath time. Night time is the worst. Of course, she has to go to the potty - and then it can be an hour or more after of screaming and crying and kicking and insisting on more wiping, often along with weird things like wanting us to hold the wipe container with our arms around her a certain way. She insists on standing -- but also pulls on our arms like crazy. We've tried everything - and sometimes stumble upon something that works for a day or two but never really holds. I swear it's like being in a different universe when she's in that place - it's extremely painful to see her so frustrated and so unable to tell us what is happening.

I've done some research on the internet trying to see what it might be. The only thing I've found is that some kids who are visually impaired have a bit of an OCD thing about wiping - and that may what it is... but we haven't found any way to make the situation better. The stuff online didn't offer a ton of solutions I must say - and none of it involved kids who couldn't communicate, so...

Anyway - it's on my mind a lot now because I'm going to Idaho in a few weeks and so I'll be leaving Ben alone here with Noa for a few weeks and knowing that he'll be having to deal with this alone is difficult for me.

The ugly - one night in the midst of one of Noa's screaming bouts - she bit me. She's never done that before - though she sometimes bites herself or bites her shirt (most of her shirts have holes in fact) so she may have been trying to bit her shirt and got me instead but it was ugly! Broke the skin and left a bit black and blue mark.

Normally, I wouldn't write about this kind of yucky stuff or even talk about it much - Noa is doing so many great things and I tend to focus on that. But this stuff is exhausting. Just plain exhausting and demoralizing and I think it's important sometimes for me to acknowledge that.

So that's my story tonight. Now I'm going to eat some food because I'm hungry!

 

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.

Now We Are 8!

A bit late - Noa actually turned 8 on the 9th, but things have been so crazy!!! It's not just the continuing school bus strike, though that is a huge part of it. We were very bummed that we were unable to throw Noa a party this year. She loves parties - but it was not to be. Maybe when all this is over. We did have a couple of mini-parties: visits from favored friends (like Melissa who brought the stickers) and new friends like Jean Andzulis and her daughter Co-co and Findlay who really made Noa's day by responding to her bossy demands for more stickers.

The silver lining in all this has been a few new additions to Team Noa (most significantly Joy Lynn and Jenny), and the opportunity to revisit some we haven't seen in a while. It really has been a team effort; sometimes including a tag team of 3-4 sitters plus me and Ben to get through the day. Overall, Noa has handled it quite well - and why not? We're all at her command. She misses school when she can't go and will repeat "skoool skoool skoool" if she's been a days out. But for me and for Ben it's as difficult a stretch as we've ever experienced.

Usually I try to keep this blog to things directly relating to Noa, but in light of that last amazing statement I'm going to veer slightly off track here. Considering all we've been through (everything with Noa, plus my MS and Breast Cancer) can it really be that this is the most difficult stretch??? Yeah. I think so.

Without going into all the gory, tedious details - we have to reserve and pre-pay for a wheelchair car service every day ($114/each way). The City will reimburse us but we have to fill out weekly forms and get them in on time - of course 4 weeks in we have yet to see a cent of reimbursement. They have a voucher program, but for those in wheelchairs, frankly it just would take forever to call all of the services to find one with an accessible van that will actually take the voucher (they don't all really take it when you call).

If Ben and I can't go, then we sent Noa with a sitter - which is really great and we certainly can't complain about that because we're so grateful that she can get there. But that tacks another $100-plus to the cost (because the sitter is then up there all day), and although we're going to try to recoup that money from the City, we have no guarantee that they'll pay up (they are supposed to provide a matron for transportation). SO everyday that Noa goes to school we're fronting around $350 BUCKS! She hasn't done a full 5 days since this started, but even if she just does three days over $1000/wk - and there is no end in sight for this strike because the side are not talking and not planning on talking.

Then there was the process of having to find and interview all these new sitters - since most of the folks already on the team didn't have day times available at all. The amount of time I spend finding, interviewing and training sitters and getting cars in place, and filling in forms and badgering the Board of Ed for relief is crazy. Every day is a whole new battle.

Add to all this, Noa's been having issues with leg cramps so we've been trying to get that taken care of - connecting all her various doctors to all get on board with some muscle relaxants to help her out until May when we can get in to see a specialist for injections to help keep her legs and feet from totally twisting inward and impeding her ability to walk without pain.

Oh, and the Cobra insurance Ben and I have been on runs out in April, and some other stuff with the Bd of Ed that I'm not even going to go into yet AND I'm scheduled to go to San Francisco next week for work. I'd bag it, but we need the dough to pay for all the sitters - though I know it will be stressful week for Ben being home all alone.

Speaking of stress - as many of you know, all this stress and anxiety sent me to the hospital on MLK Day with chest pains (at least we hope that's what it was). Since then I've been exhausted as hell. I wasn't having a heart attack, but still need some tests to make sure there is nothing else going on but I've continued to have the chest discomfort and exhaustion. I have a battery of tests with a cardiologist on Thursday, so wish me luck on that.

I could go on, but why? The point is - it's been a very stressful month. The Land of Noa is a beautiful place, but it takes a lot to keep it going!!!