ferdinand!

Just wanted to quickly post this great video my mom took when she was visiting the other day - as you may know, Noa's favorite book is "The Story of Ferdinand the Bull." Well we've been working on incorporate signs she knows into our nightly reading of the book (happy, hat, sit, etc.) but we really hit the jackpot when we started finger spelling Ferdinand. Rather a complicated first word for her to spell, but as you can see she loves doing it (even without the book). What is also really cool is that she says the letters too, and pretty clearly too! You can see that she knows when she's spelled the whole word -

Anyway, gotta run, but the big news is that we're off to Boston tomorrow for our trip to Perkins. I look forward to reporting back on that big adventure!

Wow! Hard to believe it but today Noa turns 7-years-old!!! What a big girl - and here she is demonstrating her big girlness but standing all by herself (with the help of the Ottoman, but still!).

7-years ago we never expected to be here, raising a child with such intense special needs. It's has been and continues to be and will surely go on to be a challenging ride.

BUT we could also just as well say that 6-years-ago we never thought we'd be here either! The doctor's original assessment - after telling us that there was really no predicting in a case like Noa's - was that we should not be suprised if she is never able to sit on her own, to feed herself, to dress herself, to use the bathroom, to communicate meaningfully.

So I guess you could say it's been a roller coaster these last 7-years complete with hairpin turns, soaring heights, stomach dropping free falls and a lot of just click-click-clicking up seemingly endless hills without any clue of what lay beyond.

Noa learned the sign for 7 this morning and seems to get that it's a big day. We normally have a big party for her but this year things have been so crazy-busy this year. I'll be gone all of next week (send energizing vibes to Ben), then comes her mid-Winter break (including visits from Aunts, cousins and Grammy) and on the 27th we're going up to Boston for our eval at Perkins, so we've decided to make the trip to Boston into a birthday trip by staying in a hotel with a swimming pool and hot tub.

Thanks to all of you for your love and support over the years. Onward and upward!!!

N is for Noa!

Just a quick post - Noa at the baby shower for her BBF (and long time sitter) Melissa, creating a page for her soon-to-be-here baby's book. Everyone got a letter of the alphabet to decorate, and as you can see Noa (which some help from another BBF and long time sitter, Jes) totally got in on the action. If the surroundings look familiar it's because the shower was at our place (hosted by Melissa's tireless Mom and sisters). It worked out great for us - Noa could be at the party and have all her toys!

In other big news, we're sheduled to go up to Boston at the end of the month so that Noa can be evaluated at the Perkins School for the Blind. As some of you may recall, Ben and I visited the school about a year and a half ago. It's an amazing place - the gold stand really (and Helen Keller's alma mater). The evaluation isn't necessarily about placing Noa there - it's really about getting an evaluation of Noa that actually reflects her capabilities. Evaluating blind kids is extremely difficult and even most tools used to evaluate disabled kids don't apply. For example: "Can the child copy a picture of a circle?" is a question that appears on most evals. Also: "Can the identify and point to an object when asked, like a fire truck?" In spite of the fact that these are absurd questions for Noa, they count against her in trying to figure out her cognitive skills and/or potential because even if they don't directly count against her (sometimes those questions are just disregarded), there are no blind-equivilant questions that could be counted in her favor. So, this is a big deal for us. We put our name on the wait list for this more than a year ago and only came up this quickly when a slot happened to open.   

Thank You Dr. Kurtzberg!!!

Did you see 60 Minutes on Sunday night? There was a story on stem cell therapies featuring Dr. Kurtzberg, the Doctor at Duke University that made Noa's Stem Cell Therapy possible. It's a great segement, you can find it here:
http://www.cbsnews.com/video/watch/?id=7394380n&tag=contentBody;storyMediaBox

There are so many people out there taking advantage of parents and I have to say that I suffered greatly for years - roaming the internet and finding miracle cures that I wanted to believe, full of inspiring testimonials. It was very tempting. Luckily my desperation finally brought me to Dr. Kurtzberg and we were fortunate enough to fit into her work.

While we feel like the therapy Noa did with her had some positive impact we also have accepted the fact that we will never know for sure. And that is okay with me. We know we did everything we could in the present. We were very lucky.

Ready to Roll!

This is video from yesterday: Noa climbing into her big girl stroller, ready for a (strangely) warm winter day adventure with Mommy and Daddy. Like the pig-tails? Jes managed to get them in earlier in the day. Ususally she'll put up with them for about three minutes, but she wore them all afternoon! Every time she moved to pull them out we'd say, "Oh Noa, let's keep them in! You're so cute!" And she left them in.

As you can she, she is really into figuring out how to do things herself. I have some photos of her great work walking with Daddy, but since they only want to post side-ways I'll have to deal with them later. BUT she did some amazing walking yesterday. We strolled down the pedestrian walkway on the East River to an apartment complex around 24th or 25th called Riverside that has a nice windy public plaza (Noa loves wind). Unfortunately, the plaza is up about three flights of stairs - and that stroller is heavy!!

But when we were done, Noa got to the bottom of the stairs and decided she wanted to walk for herself. She held of each our hands and walked all the way to 34th Street!!!!! She probably would have walked further, but we weren't about to let her try to walk across the FDR.

She kept a great pace and really seemed to enjoy the three of us walking altogether. It's some of the best walking we've seen her do, certainly the longest non-stop stretch: at least 6 city blocks.

This morning, after refusing every game we usually play, I discovered that she just wanted to practice standing. I think she's out to prove my end of year blog post wrong! Suddenly I'm seeing a girl to seems pretty determined to walk and climb and stand.

Oh, and if you're thinking - AND she looks way too grown up! Yeah, we're thinking that too. The pig-tails definitely make her look more big kid-ish, but I think there is something new in her face too.

After-Bath

So this is what I found when I came out of the shower yesterday...

I don't really think this really needs any more explanation.

How Far We've Come...

Well we've had quite a year in the Land of Noa. The progress can feel slow sometimes, but looking back at my posts from early January 2011, the progress is enormous. Last year we spent much of the Christmas season trying to figure out what "sheee" and "shaaaaw" meant and Noa was very frustrated. We never did figure that out.

This year she's got a ton more words and can figure out how to ask for most anything she wants (though often will need us to list those things - but she knows the signs and we're working on getting her to intiate them rather than waiting for us). The frustration is much reduced.

She's also making huge strides in conceptual thinking - she loves to find and recognize shapes, sort her blocks and other toys into their proper bins, and she gets that the little bumps on the page tell us a story! In the photo above she is holding one of her new Brillo Blocks (Christmas present) while I read her favorite night time book "The Story of Ferndinand" - she LOVES that book! And in the photo below she is enjoying her first read of "Madeline" which was a gift from Grammy and Grampy.

She still loves throwing blocks which is getting to be a problem because she's so darn strong! She actually has good aim too. She listens for where people are and then tries to hit them. It's great that she is getting a sense of direction... still, it can hurt! And she laughs if you say "ouch." She also laughs are her own farts. She is very sophisticated like that.

Other big developments: Noa ends the year really self-feeding, though scooping can still be a challenge. She can't really see if she has anything on the spoon and can't tell is stuff is dripping or falling off the spoon... until it falls, but we're working on that. We're also moving toward more time in big-girl diapers (otherwise known as underwear). Noa is actually pretty solid on toilet training - except at night - but she actually doesn't care for the underwear yet, and I have to admit that sometimes we're just overly cautious. If she does have a mistake it's usually because she told us (by signing) and we missed it, so that isn't really her fault. It is a bit of a drag that at nearly 7 we're still dealing with diapers, but I think that if she could get up and go to the bathroom herself that we'd have been done with them long ago. She actually really loves being on the potty and frankly would probably spent half her day there if we let her (she really likes to flush and zip her pants up)

We do think she is getting more stable on her feet. She likes to walk holding just one hand, but tends to loose her balance. I can't say that we feel like we're anywhere closer to independent walking, but she has a much greater awareness of her body in space. She likes to climb up onto chairs and on to the couch. She has more control when trying things like sitting down on the floor. At my parents house for Christmas she did a fantastic job of coming down the stairs - which is very hard for her and takes a lot of focus.

SO all-in-all, it's been a great year for Noa! Perhaps one of the most exciting things is that she really keeps learning new skills and making steady progress and though there are likely many challenges ahead in the new year, we feel like Noa is up for new challenges and that makes all the difference in the world. We can only hope that our tired, older-parents bodies can keep up with the demands!