FINALLY - WE HAVE VIDEO!!!

Well, sort of.

The video isn't here, it's on YouTube. BUT it's there.

You'll have to cut and paste the link - yes, I'm sure there is a way to create a link, but I'm really truly done with trying to make it happen - and I'm pretty sure it'll be worth a few extra clicks of the mouse to get to see....

Noa's new-found independence: getting into her wheelchair by herself!

http://youtu.be/NYkhUajuc4s

Other new tricks include finding her sit n' spin and getting on and off it by herself and getting out of bed and/or off the couch by herself (luckily she got out of our bed by herself to pick up a stuff animal, she realized that she couldn't reach down to the floor by herself and woke up Daddy to help her). She also likes to have her bin of stuffed animals next to the bed so she can pick which ones she wants by herself. The ones she doesn't want, she throws at the window or, more precisely, at the blinds which makes a very funny and apparently satisfying noise.

Noa is off of school now for a couple weeks before the regular school year starts up - so I'm sure they'll be lots to report. Will I find the time to actually report it? Stay tuned to find out...

Sophisticated Lady

Phew! How nice to shift back into talking about Noa - instead of all the yucky battles that we have to fight (I'm sure there will be more, but right now I'm enjoying a quiet moment).

PLUS there are so many great things to share! Here is Noa listing to Daddy read to her. She really seems to like this particular book: Don Juan by Lord Byron. Yep. She really likes it. But she's always had sophisticated tastes. When she was younger some therapists thought she had no attention span because she had no patience for Mary Had a Little Lamb - the truth is what she really wanted to listen to was Pictures at an Exhibition, or maybe something by The Silk Road Ensemble. I took her to listen to them live when she was about two years old. She did a solo in a family drum circle with them and ended up really hitting it off with them - later she got to try a bunch of their instruments. They were very cool.

ANYWAY - while she has always had very sophisticated taste in some things, she has been way behind the curve in so many things that are just basic kiddie milstones, like putting food in your mouth or rolling over... both of which she did last week all on her own!

While she will eat with a spoon, she has never put food to her mouth with her fingers - or licked food off her fingers. But she has been using some hand lotions with different smells, so I was able to get her finger near her mouth this week when she accidently touched her food (she would never let me put her finger in the food on purpose!) And once it was up there, just a little step to touching her lip and realizing that it was yummy. We got 5 or 6 fingers of food in before she decided she'd done enough, but it was a great start!

Then later that afternoon, she just did a little log-roll all by herself on the way to trying to stand up, which was great. Tummy time used to be the most tragic time of all for her and she always hated it; never learned to crawl at all - and while she will occassionally get to hands and knees now, I'd never seen her just roll like that.

Over all, just a lot more self-motivation, which is great but has led to some interesting discoveries as she becomes more adventureous about moving around the apartment. Like the other week when I left her in her play area to take a shower (used to always be a safe bet) and got out my very short shower to find her by the front door, having knocked over an umbrellas stand, playing with a bat. Guess it's time to do that child-proofing other parents are always going on about... hm.

Chin Up!

Quite amazingly, after numerous calls, emails, texts, running around to HRA, MAP, Medicaid "Help" Desk, OMRDD (not OMPDD), EPI, SKIP, etc., Ben (who is a terrier to be feared when he's got his teeth into something) FINALLY reached someone who at least knew who we needed to talk to. So after months (literally) of dealing with people who said they wanted to help but couldn't, or didn't even know how to, we finally found the one (and I think there was just one) who could. Not only that, he happened to reach her at just the right moment.

Just as I was leaving our MSC's office (having gone there to pick up copies of everything she'd sent in on our behalf so that we'd be ready for the hearing Tuesday) -already IN the elevator on my way out of the building - Ben texted me to say that he had someone on the phone who could help but she needed to talk to the MSC. I took the elevator back up and stormed right into her office. One short conference call later, agreement was finally reached! I really thought I was going to burst into tears (I think the MSC was going to too).

We're still waiting for the letter saying that the waiver is granted, but the wheels are moving (which on a Friday in NYC in late July is no small miracle). We still have to go to the Hearing on Tuesday, but it all goes as it should we'll be going with a letter stating that the wavier has been approved.

Of course yesterday we got another threatening notice threatening to cut us off on different (though related grounds) - but it seems to be a matter that will aslo be resolved by the waiver so chin up, we muster on to the next adventure in the Land of Noa.

at least the pictures are pretty...

Thanks to Facebook, I sometimes forget what I've posted on the blog and what I've upload to FB from my phone, but wanted to get these up here because they are cute and make me smile - Noa is wearing an old pair of my glasses by the way. She likes putting them on and taking them off. She even made up the pretty bead headband herself. Very creative.

So.... you might want to look at the cute pictures every once and a while as you read this post.

Mostly on this blog I've been focusing on Noa's successes, and even in the time of trial I've tried to focus on her - not the system. But the system intrudes and so often takes Ben and I away from focusing on Noa so that we can fight with the people who are supposed to be helping her (and us!).

Tuesday we have a hearing to determine if Noa's Medicare will be cut off. Back in April they suddenly sent us a notice saying that in 3 weeks she would cut off because they approved her by mistake (their mistake, not ours).

This was especially surprising to us because we went through a lot of trouble to get Medicaid... 3 years ago! And every year we've had to re-up her Medicaid (also no small task) and every time its gone smoothly.

All of Noa's therapy - basically her school too (which is where she has most of her therapy) - is paid by Medicaid. So to cut her off without warning basically take her out of school and therapy and we'd have to start all over which would take up to a year. If she did not qualify for Medicaid that would be one thing... but she does. There is a whole catagory of Medicaid specifically for kids like Noa. And everyone we've talked to agrees. The problem seems to be some paperwork.

We applied for a fair hearing and got services extended until the hearing (which is Tuesday), and resubmitted all our paper work (from soup to nuts, not just the stuff they thought we were missing, because the apparently couldn't find some of her paperwork). We were hoping we'd hear back about the new application before the hearing - making the hearing unnecessary. But we haven't heard. I'm sure at this point my legal advisor (Ben) would tell me to say no more about the particulars our situation, so I won't. But I will say that we've spent the past 24 hours trying to figure out if - after all our efforts - we still didn't have all the right paperwork. It now seems that do, but if you want a sneak peek at what that road is like, check this out.

The OMRDD wavier, which is now an OPWDD waviers, covers all the same stuff as a CAHDD or CAHPD but it doesn't waive all the same things and has different paperwork. In trying to figure out what is waived in each Ben visited the Help Desk at MAP, which is an arm of HRA. They said to talk to CAH, but CAH didn't know how to apply for a CAH and sent Ben to MAP. They sent Ben to a website that also didn't have it the form. If you click the link it takes you to OPWDD - because you still need OPWDD eligibility to get the CAHDD Or CAHPD - and we have that. This all has to be done through your MSC who can prove that you already have a FAP (which you get by getting a FAP service, but you can't get that unless you have a waiver - which you apply for with your MSC that is assigned to you after you get your FAP, and there's a waiting list for that. But it doesn't matter because you don't have the MSC or a waiver to get you the FAP, so you have to prove that if you had a FAP, then you could get an MSC - which you can only get once you've been approved using the form that only your (non existent) MSC can submit for you. Of course you can't get any of this until after you go through the process of being rejected - at which time you can apply for approval.

Confused? Maybe the cute pictures will help? Yeah, just look at the cute picture and cross your fingers for us Tuesday!

Back to (Summer) School

Got this great photo from Noa's teacher today showing her enjoying "sports week" at school.

We feel very fortunate that Noa has summer school so that her therapy can continue through the summer and its especially great because it keeps her busy doing all kinds of great indoor stuff when it's so hot and uncomfortable outside! As you may recall, Noa doesn't sweat properly so being outside in the kind of heat we're getting right now is just plain unhealthy. But she loves school and as you can see if having a great time bowling.

What Noa Did on Her Summer Break

Our Idaho vacation may be over, but the memories linger... unfortunately so do my ongoing issues with rotating video so that it posts on the blog properly. Oh well.

Well you get the idea of the one-hand walking from the photo anyway. Since coming home, Noa continues to want to try to walk holding just one hand. Sometimes she gets some real steam going, but balance is still an issue (I think she hopes speed will make up for balance but that only works for so long). But she really wants to make it work and our experience has been that once she gets it into her head to do something... she's eventually going to figure out how to do it.


In this photo from the fabulous Gold Folks hot spring you can really see just how long Noa is! She's downright lanky. She is really doing all the work here, I'm just giving her a little reminder every once in a while to arch her back "up up."

Noa also likes go from me to Ben, and then from Ben to me. To call it swimming with be a stretch, but we're working on getting her to use her arms and legs to propel herself. She has this insane level of confidence in the pool and keeps trying to go off on her own only to realize that she actually does need someone to hold onto to keep her head above water, but that doesn't stop her from taking a few much-needed gulps of air and then trying to escape again. She can actually stand in the shallow pools at Gold Folk so she was able to work on standing in the water the alone (and kneeling in the really shallow places) and bouncing -- and she really enjoyed that. I think she feels very free in the water - it just holds her in a way that air doesn't and that makes her more aware of her body in space which can be a challenging awareness for blind kids.



I don't know if this photo shows how tall Noa is, or how short I am!

4th of July Report

Hard to believe we're already getting ready to leave McCall! We've had a great time - and Noa has been doing some amazing stuff. I'm sharing a few photos here, but when we get back to NYC I'll upload video from her Independence Day walk with Daddy in the Park. She likes to do one-hand only walking now. When she does it with me holds one hand and then puts the other hand on her arm exactly where she wants it.

Noa has been enjoying lots of bike rides (sitting in one of those bike trailers). She makes a motor like noise - and sometimes insists that Daddy "go go" - mostly when he slows down because he's pedaling uphill. Noa doesn't like that. But she likes the more off-road paths in the park that are very bumpy. Noa has also been doing a great job in restaurants (as you can see in there photos). Of course is helps when she can sit outside and feel the breeze.
And of course... the hot springs. Yesterday Noa really floated on her back all by herself for a long time. She really gets it. When she would start to sink, I'd just touch the small of her back and say "up" and she'd say "up" and push herself back to floating. She even did some kicking, and some jumping in the water all by herself. We love the water -- it's one of the few activities that actually exhausts Noa without also exhausting us!

Noa likes saying "up up" when she is standing and pushing up various parts of her body - she gets that she has to lift up to stay up. Yesterday she also liked lifting her shoulders up with I said "up" and then letting them down when I said "down."

She is also learning to stack blocks - and is doing a great job (as you can see from the stack in the photo - though I did help her pick which blocks to stack). She can identify circles, ovals, squares, moons and rectangles on her sorting box, and loves putting together snap beads. So of course, all that keeps her very busy. She has had a little loss in some signs - signing more more more more, with no object - but we're hoping that some of that has to do with the fact that she is just focused on so many other new things right now.

More when I'm in closer, more regular proximity to internet!