Signs

Now that our Duke adventure is behind us, you may well be asking yourself... what next? Well, this is it!

As you can see, Noa has a bunch of signs and she loves to "talk" with just about anybody who can follow her directions. While she has not really made progress as a speaker, she has made great progress - and shown great enthusiasm, as a communicator and our next goal is to get her some support around this. Noa is very eager to communicate and we know she could be doing more... (photo to the right: hat & shoe)

Here is the catch... she isn't deaf. Why is that a catch? Because the Board of Ed wants proof that she is deaf in order to provide signing services. We've run into this problem before. And no matter how many times I explain it to her, Noa stubbornly refuses to pretend to be deaf!

I've tried telling people that it's an auditory processing disorder but again, that stubborn Noa refuses to pretend that she doesn't understand what we're saying. Can you believe that girl?!?!

What is really strange to me about the whole thing is this assumption that being able to hear means that one is able to speak. Not only is it a strange assumption - it's just plain wrong. For Noa the processing difficulty isn't in hearing language, it is in putting together sounds to create words, and it seems to me that if there were ANY doubt about that it could be solved by just spending some time with Noa and seeing all the signs that she has; she obviously has a lot to say, and is more than ready to say it!

I'm would have included more signs, but I'm finding that posting numerous photos in one post and having them show up where I want them to be is... vexing.

Christmas Update

Hello Folks and Happy Holidays. We're just back from a few days with my family down in Maryland - it was a wonderful, fun trip and Noa really enjoyed herself. And we've seen some exciting growth just in the few days we were away - as with all kids, travel tends to bring new challenges and new discoveries.

We brought Noa's walker with us on this trip because she has been doing so well with it lately, but some of the stuff was doing on this trip was totally new. In this clip, you can see Noa experimenting with balance and reaching without any assistance from me. I'm spotting the walker, but I'm not stopping it.

As you can see, when Noa tips the walker to the side (and she seems to tip it as far as she can!) she figures out how to counter herself with the other side of the walker so she doesn't lose her balance. This is really big because balance has been a big issue for Noa. When she is holding onto our hands and walking she tends to find her balance by pulling on our arms (so she isn't finding her balance by putting her weight into her feet). The walker helps her to do that, and now that she is controlling it herself, she is doing it in a way that she hasn't been able to before.

What is really cool is the very immediate affect his has had on nearly all her movement. She seems to be more free and easy and comfortable with her movements. Noa has always been slightly "high tone" - meaning that her muscles tend to be tense and rigid, esp. in her legs. When she would lose her balance she would just fall over like a plank. Suddenly we're seeing a significant change in this!

In other news, Noa really did a lot of reaching out for things this weekend (a bit of a hazard at the dining table actually). Her reaching was usually pretty specific: in other words, she seemed to see things and want to reach out for them. She also seemed to be visually interested in some of her toys - esp. a yellow book that plays music, which my folks got her. She can sit with for long periods just turning pages and seems to look at it. I'll try to get some video of that. She also loved relating to everyone - especially getting Grampy and Grammy to kiss her (they pretty much followed her directions). She showed a much higher tolarance for the many new toys she got. So all in all, it was a terrific trip!

Very Cool Article in the Washington Post

Hey Everyone - Happy Holidays, I have you all have merry jolly jiggling, but not jangling, fun!

We're off to Maryland for a couple of days, but didn't want to run off without sharing this photo of Noa trying to not touch snow, and this terrific article that my mom forwarded to me from the Washington Post:

http://www.washingtonpost.com/wp-dyn/content/article/2008/12/19/AR2008121903035.html?referrer=emailarticle


The article is about a man blind after two strokes, who can navigate through hallway obstacle course without running into anything - leading doctors to believe that he is somehow using the information that is coming through his eyes even though he is unable to do what we would traditionally call "see."


In some ways this relates to the work we're doing with Noa. We know - thanks to a terrible test that we will never do again - that she is getting information through her eyes and that it is traveling to her brain. But what that information does... we have no way of knowing. The CVI therapy that we are doing with her assumes that her brain can make use of this information. This continues to be a controversial idea though to me it makes perfect sense. The brain likes to organize. We are organizing creatures. Information is coming in, the brain tries to figure out what to do with it! Since Noa's brain has no idea what to do with it, we have to help her brain figure it out. Basically.


And with that... a give you all a great big ho ho ho ho and away!

My Response to the Newsweek Article on Stem Cells

Okay, so a recent issue of Newsweek featured an article about banking stem cells and whether or not it was all just a marketing scheme. I do really understand the concern - the marketing for these banks is pretty heavy duty and they do make some... overreaching claims. On the other hand, as you can all well imagine, I'm very positively inclined toward the idea of banking stem cells. SO I wrote a letter to the editors at Newsweek which I'm included below. (I actually have had a letter published in Newsweek before so I don't know it that counts for or against a repeat showing).

If you'll read the article (http://www.newsweek.com/id/174276), they actually specifically talk about the Duke program and quote Dr. Kurtzberg who did Noa's infusion. She is not a big fan of the banks' marketing and does warn parents against spending the money unnecessarily - and I totally respect her point of view on that. She has seen a lot of parents with unrealistic expectations, often fed by the banking company's heavy duty marketing and I do think that makes her job harder. She doesn't want to promise people things she can't deliver and was very clear with us about this and really really really appreciate that. On the other hand, from a parenting point of view, I can't imagine how I'd be kicking myself now if we'd decided against banking the stem cells.

Any-who, my letter follows:

To the Editor:
As the parent of special needs child who recently underwent a stem cell infusion under the care of Dr. Kurtzberg, I read Mary Carmichael’s story on banking umbilical stem cells with great interest. Unfortunately, Ms. Carmichael left out an important element in what was an otherwise very informative piece and that is, for new parents living in the here and now, the fact that they may be able to do more “someday” or using other forms of stem cells, or donated cells, is pretty much a moot point. My daughter is here now, blind and with multiple delays and disabilities. She is young and her brain is still developing so thank goodness we banked her stem cells. Did my daughter’s infusion work? I don’t know. It’s too early to know, though we do believe we’ve seen some positive changes. But we will probably never know with scientific certainty. Dr. Kurtzberg is very correct to keep parents’ expectations in check. Those going into something like this should have no illusions. But when Ms. Carmichael asks if parents are willing to take that leap of faith…? When you’re faced with a seriously disabled child leaps of faith are sometimes the only leaps that you CAN take. I recently chipped into to give a my brother and sister-in-law a gift of stem cell banking and I’ll tell your readers (who can afford it) what I told them: bank them for a few years, and if you feel your child is developing “normally” or the scientific developments make keeping them unnecessary, then donate them to a public bank or for scientific research. In either case, it’s a good and very worthy investment.
Sincerely,
Jeni Mahoney, New York

Noa's Rockin' Holiday Post

Wow! Those weeks between Thanksgiving and Christmas really fly! I'm bummin' that I haven't had a chance to post for a while. Oh well, such is life.

Yesterday was the holiday party at school, which Noa mostly loved: rocking out to the Christmas tunes was great. But she was NOT into Santa.... though she did like the gift he gave her. Here is a photo of Noa gettin' down with Emma her one-to-one at school (she is specifically assigned to work with Noa and they have tons of fun together... as you can see).

Below is a short clip of Noa showing off a couple of fun new tricks:
One is the open vowel sound in what we've come to know as her "singing" - she's doing a lot of experimenting with sound right now: the quality of her voice, the pitch, short bursts vs. sustaining a sound, it's really quite wonderful. Recently she has started saying "mmmm" when she signs for more, and growling when she is annoyed or mad. While it's not our favorite new skill... it does seem kinda appropriate.

And then there is the bouncing and the rocking. Yeah, it looks like stuff that any 8-month-old would do in preparing to crawl... but it is stuff that Noa has never done and it's a real sign that she knows there are other toys out there, if only she can get to them! Conceptually, this is huge because we've always felt that if Noa understood what she could accomplish if she could move herself around, then she'd get herself there. She is nothing if not driven!



In other very cool news, a good friend of our leads a choir that was doing a Holiday Concert this weekend - the theme was family - and the first part of the concernt (The Child) was dedicated to Noa with a prayers for improvement following her therapy. We took Noa to the concert and she totally rocked out to the choral music (and quite interestingly sat with her hands in a praying position throughout the first piece. I'm not kidding and we have witnesses).

So, that's the very quick update.

There is an article in this week's Newsweek about banking stem cells and it specifically references the program at Duke. I do want to respond to some of that, but I'll have to do that later has my mommy responsibilities are calling...

Up and Running

Hope everyone had a Happy Thanksgiving - we had a lot of fun here on Turkey Day, followed almost immediately by a cold for Noa, which is why I haven't posted in a bit.

This video is from before Thanksgiving - taken by Melissa (Noa's BFF) - at the Rusk Institute where she does PT each week with Julie (inlcuded in video). I like this clip because it demonstrates how Noa is really getting the idea of how the walker works: how she has to pull herself to standing, what happens when she leans back, and how to move it forward. It also demonstrates how much she has come to enjoy the walker - which used to inspire immediate meltdowns.

Now that Noa is on the mend, she is back in action and hopefully I'll get some new photos and video soon. She continues to do a lot of moving and "talking" and really seems to be more and more interested in the information she gets from her eyes. I see her looking at things sometimes (sort of sideways, and shifting her head side to side which is what CVI kids tend to do). For example, this morning she was obsessed with her blanket and wanted to carry it with her to breakfast. At one point she had it on the table in front of her and was touching it and she suddenly seemed sort of curious if this thing she was touching was the thing she was also seeing. I'm not sure if she decided what it was (I told her it was her blankie, but its hard to tell is she got it) - in any case, she sure was interested.

FINALLY! Some Light Box Video!!!

Thanks to my dad sending me the proper software, I've finally been able to edit some of my early light box video so I can share some of this fascinating world with you all. I didn't want to post any of the current stuff without also providing some earlier stuff as a context.

As you can see in this early light box video, taken just about a year ago, Noa shows no interest in the blue blocks on the light box. This is probably about two weeks into starting this therapy... and we have ten or fifteen minutes of video that is really just more of the same. Noa sitting in front of the blocks, and us trying to figure out if she is taking any notice of them. The most difficult thing at this point was to keep doing this every day, when she didn't seem to be responding to any of it.

The next clip is more recent, from earlier this month actually. As you can see, her entire attitude toward the objects has changed. She is very engaged. And notice the way she delicately reaches out for a block with her fingers - very precise (although smashing through them like any toddler and making a big noise is also popular). We're working now on the concept of "give to mommy" and I'm trying to distinguish between colors for her so that we can evenutally get to sorting colors. We're also taking blocks out and putting them into baskets. Doing this on the light box helps her to just get the general concept of giving, putting and taking - which she now uses with other toys outside the light box. We're also working with new objects: balls, glow sticks, pom-poms, basically anything that is blue, red or yellow.

Yeah, it's a big change from clip 1 to clip 2... but this is over the course of about a year, so while it's very exciting it's also very challenging and requires a lot of patience.

So, what are the practical applications of all this? Well, first of all, Noa is getting the idea that the information coming through her eyes might be useful in some way. Like most CVI kids, she still tends to look away when she reaches for something (the visual information is a distraction), but sometimes now she does look and reach at the same time. So that is a major goal that we're working towards.

We've also found that she has become more aware of space since working with the light box. Space awareness has been a real challenge for Noa. She has really had to learn about it inch by inch - it used to be that if she put her hand out and something wasn't there then is might as well be on the moon: it was unreachable, and there was no possibility of getting it (without mommy or daddy). Hearing something didn't help because she had no idea that there was a place it could be coming from. There were two places in the world: here and not here.

And for so long it was impossible for her to understand that there was any use in crawling, scooting for walking. The implications of her growing sense of space cannot be over-stated.

So, there's lightbox 101.