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.