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.

Been trying not to make too much of it...

People ask me all the time, "Did it work? Did it work?" And I have to say that there is no way to know, and that even if there were, the doctors say it would be more like 6-12 months before we'd see anything really really. And I've tried to stick with what. BUT I have to say that over the past few weeks since we've been home, we've just seen so much (and when I say we, I'm including everyone most everyone who works with Noa).

It's not huge things (although to us they are huge), there is just such a preponderance of seemingly small things that it becomes hard to make the case that they are all just coincidence. The the video below is an excellent example. In it Noa demonstrates:

1. The twisted Gregorian Chant singing that I mentioned in the previous post, which now goes on all day (and sometimes in the middle of the night, yeah, great) and includes many sounds we haven't heard before, most markedly the open sounding vowel sounds.

2. She reaches over the piggy bank and without a beat stands it upright so she put the coins in (it used to be that she would try to use a toy that standing wrong-side up, decide that it must be broken and then throw it).

3. She figures out how to put on her jingle hat. Especially interesting is the time and focus she puts into figuring out how the hat works. Again, a few weeks ago she just would not have even taken the time to investigate this. This one really impressed me.

In other news, we took Noa to her doctor as Rusk Institute on Friday - now that she is doing so much standing, her feet has spread more and she has suddenly out-grown her braces for her feet and I needed to get a new rx. The doctor was very impressed with Noa. She said that she was markedly more flexible (she has always been what they call high-tone, in other words really really really not flexible and very tight in the legs and feet). For the first time, she didn't insist on a hip x-ray because her walking and standing were so solid. All great news!

Noa's cousins from Australia, Levi and Eli, arrived this weekend (oh, yeah, with their parents Izzy and Duane), and Noa was been very intersted in Levi, who is just a little older than her. Last night at dinner she kept reaching over to touch him. She was a little less open to him reaching over to hold her hand. In fact, she even signed for him to "stop." But soon she was leaning in his general direction again.

Hope you all have a wonderful Thanksgiving. As you can imagine - we feel very thankful this year!

She Likes to Move It, Move It!

If you recall, on November 16th I posted a video of Noa scooting around in the tub entitled "Let Me Explain Why This is So Important" - well here is a demonstration of that: a totally new trick that came out of that discovery of movement!

There are a couple of things here that are really special. Of course there is the fact that she is moving herself so purposefully through space - something that is totally new for her, but perhaps even more is the ability to hear a sound and recognize which direction she needs to move to reach it.

Think about this: if you had no sense of space because you couldn't see, and if you couldn't walk or move through space, so you had no way to test your sense of what direction sounds were coming from... how would you know where a sound was coming from? In fact, we learn this by hearing a sound and then looking for where it came from - we learn it from sight, and then over time figure out how to judge where sounds come from when we can't see them.

SO this is huge for Noa - you can see that she searches the ground a bit with her hand, not knowing the precise place where the stars are, but she has a great general sense. How did she get this? Is this a sign of the light box therapy working? A sign that our efforts to get her to walk toward things (with our help) is paying off? Perhaps both. Who knows - but it's very exciting and really opens up the world to her in a whole new way and gives her a new sense of control.

You may also notice that she picks up a couple of toys a long the way - she loves she little coin toys, but she hears me clicking her star toys together and her hearing is so keen that she knows which toys I'm clicking together - so she dismisses the coins. She knows that she is going after. In fact the sign she makes after tossing the yellow coin is for "more stars."

Another new thing is singing - okay it sounds like a twisted Gregorian Chant - but it just started in a big way and that's totally new too. Maybe I can get some of that... a lot of new stuff these days. Hard to keep up!!!!

Food, Glorious Food!

Thanks to Melissa for getting this great video of one of Noa's great new tricks... not just putting the spoon in her mouth, but actually picking up the spoon and putting it in her mouth! If you check out the thing she does with her head after putting the bite in her mouth, she seems to be checking out the edge of the bowl visually - this turning of the head to see something is characteristic of CVI kids... In the last bit of the video, she signs for "more zu-zee." The sign is actually for "toothbrush" but we use it to mean any of a handful of vibrating toys that she puts in her mouth (including kiddie electric tooth brushes).

Melissa also got some GREAT video of Noa walking with her walker at Physical Therapy - I need to go through those but will post some asap (yes, I did figure out something about posting video: post shorter clips! so now we're taking shorter clips.)

Silly Mommy!!!

Noa hates mittens. This is just a fact. When I - or Ben or Melissa or Jess - try to put mittens on Noa she pushes us away, throws the mittens angrily on the ground, screams, bites or slaps herself on the head (yes, I've explained to her that hitting herself doesn't actually hurt Mommy... at least not physically).

Noa hates mittens. That is the conventional wisdom.

Yesterday I had this brilliant idea: why don't I let her just play with the mittens without actually trying to put them on her. Maybe then they'd be less threatening. So, I was on the phone with my folks when I thought, I'll give her the mittens to play with while I'm on the phone and... well see for yourself.

If you listen to the audio, you can hear that I'm still on the phone with my folks, so this is literally within moments of giving her the mittens for the very first time.

Oh, silly Mommy! I like mittens. I even know how they work! Mittens are fun... but only when I do them!

Let me explain why this is so special...

Okay, so it's a cute kid playing in the tub. What's the big whoop?

Well, this is the first time we've seen Noa move herself around in the tub like this... in fact its the first time she has really moved herself around with this kind of freedom in water, on land... ever!

Noa does not walk, crawl, roll or other perambulate. We've see her scoot alittle (back into a chair, or to lean on a wall) but we've never seen anything like this - moving through space freely and with ease, just for the pure joy of it!

This is from this past Wednesday evening, and Melissa told me that Thursday afternoon she was already trying it out on the floor in her play area. Pretty much the thrill o' the week 'round here.

We've been back just about a week, and a lot of folks have asked "so....?" The "has anything happened?" being mostly implied. It's really hard to not look for every little moment to have some greater meaning, especially when you're wanting it so badly to be true. But life is full of such dilemmas.

Noa is back to her routine - included her physical therapy at Rusk Institute (pictured). Therapy ON a swing! What more could a girl ask for??

The main thing we've noticed since coming home is how talkative Noa has been. She is prattling up a storm at home, at school, in therapy - she has a lot to say! We're hearing some new sounds, and some sounds that have been mysteriously absent for a long time. She has been saying "b-b-b" every time she is about to drink from her bottle, and seems to be sort of singing a long to music sometimes. She seems to call me mama sometimes, but she also just says it randomly quite a lot so it's hard to know.

She definitely seems to be turning toward me more when she "talks" to me - which is nice.
She has had some senstivity in her feet - which is interesting. She has been a bit obsessed with her shoes since the IV so we don't know if that's still in her mind. And to be perfectly honest, she's had a few meltdowns over the past few days that seem to have to do with not getting what she wants right away - or not being able to communicate what she wants.

It's hard to anticipate what signs to teach her next - and to figure out how to adjust signs so that they aren't too much like other signs. We think she is ready for more - but we've been a bit stuck trying to figure out what she wants to be able to say. We've been trying to get a speech person who is fluent in sign (our lovely speech therapist who is fluent is home with her baby now - we miss her!) - but it's been difficult.

Believe it or not, one of the problems is that Noa isn't deaf and the organizations that provide this kind of thing do it for deaf-blind kids, but not blind kids. I've actually tried to convince people that she has a hearing processing disorder! (which she may) But then someone talks to Noa and she responds appropriately... and oh well. So it's been a real challenge and we're still working on it.

Anyway, slightly off track, but that is the week one report. I'm still battling to post video, which is a bummer. I need a 13 year old to come over and show me how to make this work!

Light Boxes and other stuff like that

I’ve been wanting to post more about the light box therapy we do with Noa – but I’ve been having some technical difficulties with my video clips so I'm going to post this now and I'll just have to keep trying with the video later. Frankly, I don't even know how much sense it makes without the video...

The light box work, and a lot of the work we’ve been doing with Noa is based on the work of Dr. Christine Roman. Her theories and therapies have only recently come to be more widely accepted. In fact, a surprising number of people who work with CVI kids have heard of this therapy – and of Dr. Roman's CVI assessment scale – but don’t know what it is. Even at Noa’s school! The first time I approached them wanting to get this therapy for Noa… well, I didn’t get very far. Undeterred, I tracked down Sandy Newcomb, in Maryland, who trained with Dr. Roman. She came to meet with us and access Noa at my parent’s house. If the school wasn’t going to do it, I’d do it myself! Sandy gave us SO much information!

For example, CVI kids tend to shake or move their heads a lot - this used to be viewed as a way for these kids to experience vestibular stimulation (movement), but as it turns out these kids see things more clearly when in motion (seeing motion is easier than seeing something that is still - which makes sense, things that move catch our attention before we know what they are). So Dr. Roman has taken this and other CVI traits and asked - what useful information is a child getting from this behavior and how can we use that.

We thought that Noa would have a very low number on the CVI because it seemed to us that she didn't use her vision at all. But Sandy pointed out ways in which she seemed to be using it, that we'd just never considered. Notice I say that she is "using her vision" not "seeing" - we don't know that she is using that imput in the say we would "see" something. But she is getting information that could be useful in terms of figuring out the space around her, or where an object is.

One of the things I love about Dr. Roman's point of view is that she works from the assumption that there is a purpose to what these kids are doing. A lot of CVI behaviors used to just be chalked up to what we used to so charmingly call "mental re-tardation" or cognitive impairment. The more I learn, the more I find that to be an easy answer that lets people off the hook - makes it easy to say that they can't do anything.

Sandy helped us figure out how to use the light box - and what kind of real goals we should have. Over time, Noa started to make some clear progress. Small, but clear, and in time, the principal asked for Sandy’s contact information and we are tremendously grateful that they arranged for her to come up and do a one-day session to help them work with CVI kids there.

But the light box work is only a part of what Dr. Roman advocates. In a nutshell, one has to keep things uncluttered for CVI kids. It’s really about keeping things very simple and in effect, teaching the brain to recognize visual information. The light box is especially helpful because it gets rid of all distraction, and because a lot of these kids are attracted to light, it provides a clear, specific fous. You start out simple with transparent color blocks (most CVI kids like red, blue or yellow – Noa seems to like blue best). At first, it can take a LONG time for a child to notice the block, and a long time for them to touch the block. It is a very slow process. VERY slow.

But beyond the light box, it is important to present visual information in as uncluttered a way as possible – so we totally designed our life-style. No bookshelves full of books in the living room. No colorful play area: white shelves, white cabinets and white bins (and few key blue ones), a plain rug with no design – and I have to say it made a huge difference almost immediately! It gave her a greater sense of space. All that colorful kids stuff was just overwhelming her!

Okay, so I know what you're asking: Does this mean Noa can learn to see?????
Well, not really. But she can learn to make better use of the visual information that is getting to her brain. Every kid starts at a different place with this, and every kid gets to a different place.

The sites below offer some background on the theories behind this work:
http://www.pattan.k12.pa.us/files/db/cvi.pdf
http://www.tsbvi.edu/Education/cvinotes.htm
http://www.scsdb.k12.sc.us/Deaf_Blind/News%20Alert%20summer%202008.pdf

And this video includes an interview with Dr. Roman which is pretty informative. http://video.aol.com/video-detail/cortical-visual-impairment-treatment/2680146338

Back Home...

Noa has been in a great mood since we got back to NYC. Very happy and filled with laughter. She continues to do a ton of babbling - lots of ma's and ba's and di-di-di-di's with some ja's and t's and v's thrown in for a bit of spice. He babbling is much more conversational than it's ever been - and we've just been enjoying that.

She's also more interested in the cats these days -it used to be that if one of them brushed by her she'd do her sign for "make the toy kiss me" which her response to pretty much any stuffed animal. But over the past few days she's done some petting and leaning toward the cats (well, toward Shekhina anyway).

As I said in the last post, we're trying not to read much into these things. They are all good signs - regardless of where they came from. And we continue to be grateful for all the good wishes that have come our way from all of you. Noa has so many people sending her love - and sometimes when she laughs I feel like she's just plain tickled by it all... and in light of that I'm including this video of Noa in the hot tub at the hotel. Or at least I hope I'm including it... I like it because it includes Noa's fancy hysterical laugh which really bounces off the walls in the little hot tub/greenhouse room.

May just be a coincidence but...

Okay, okay, we’re trying not to make too much of it but…
Last night, just 24 hours after the transfusion, we did have, well not miraculous, but very surprising development.

This past summer, Noa suddenly stopped babbling. It was pretty devastating for us. Of course she has learned a lot of signs since then, and she does a great job of communicating that way. She did eventually start making a few sounds, but it was nothing like what had been doing before. The biggest loss seemed to be the sounds “ma ma ma ma” and “b-b-b-b-b” and combinations like “mama-ba.”

We’ve been trying to get them back. We even have old tapes of her saying ma ma ma ma and b-b-b-b-b and we play them for her nearly every day. She has always seemed interested, but has never responded… until last night… well, here, see for yourself:

STUFF WE LEARNED WHILE NOA SLEPT

While Noa lay passed out on my lap, Ben had the presence of mind to ask Dr. Kurtzberg some excellent questions and thank goodness, because we learned a lot!

WHAT DO THE STEM CELLS DO?
I had always assumed that the stem cells themselves created new brain tissue (or whatever new tissue was needed) – because the cool thing about stem cells is that they are undifferentiated, meaning they can be activated to become any kind of tissue. But apparently the theory is that stems cells used in this type of therapy do not become Noa’s new brain cells, rather they cause her current brain cells to re-activate and create new cells and/or new connections.

So, for example, one would not look at an MRI of her brain in a year and necessarily see anything different – it should not change the shape of her brain per se. BUT there is a special kind of MRI that could track what was happening on this tiny cellular level and they are hoping to get funding for that in the future so that they can do before and after MRI’s that can track this. Until then, the results are going to be mostly anecdotal.

HOW DO THEY KNOW THIS?
Apparently they have animal studies that seem to confirm this theory of how the stem cells work to activate existing cells. They also have animal studies that confirm that the stem cells seem to go to (or communicate) with the injured for affected area. The theory here seems to be that those cells send out some kind of signal that the stem cells recognizes. Again, this is what they surmise from what they have seen in these animal studies – and they really don’t pretend to understand why or how it works.

UMBILICAL STEM CELLS
Another interesting thing for anyone interested in the future of stem cell research, it appears that umbilical stem cells are much more stable than embryionic stem cells and both Dr. Kurtzberg, and the other doctor Ben talked to in Texas seemed to think that they were not as promising in terms of moving forward. I don’t want to get political here, but I think it’s important moving forward that we help to encourage the distinction between different kinds of stems cells.

Another interesting part of our discussion was about what they hoping to learn from this kind of treatment. It seems like a bit part of what they are looking to figure out is how the stem cells communicate with other cells in the body to activate them. Is there, perhaps, another way to activate those cells? So, it’s not necessarily (at least in this case) about harvesting the cells to create new organs, or replace old tissue, or all that sci-fi stuff that we often hear about in the TV blurbs.

WHAT DOES THIS MEAN IN TERMS OF OUR EXPECTATIONS?Well… I think it means that we just don’t know. And whatever happens, we may never know if it was the stem cells that made a difference. We’ll be following up with the folks at Duke every three months or so – and perhaps go back down at some time in the future for an exam. What are we looking for? Anything that falls outside of what we or her doctors or her therapists might have expected in her progress. Of course, we’re talking about a kid who has already surpassed expectations in many ways – so how do we measure what is outstanding?

WHAT YOU SHOULD KNOW ABOUT COLLECTING STEMS CELLS
If you, or someone you know, is considering saving their child’s umbilical cord blood… as you might imagine, I say do it, do it, do it! Get together with your friends and create a fund! You only needs so many blankets and burp cloths! Look, we didn’t expect to need these! Honestly, even if you just keep them for a few years, its worth it.

There are apparently two kinds of bags they store the cells in. We didn’t know this – but it’s important. Some companies store all the cells in one bag, some store them in 20/80 allotments – so that you can unfreeze and use just 80 percent and retain the other 20 percent for later. This seems like a good option to me. In our case, we didn’t have as many cells as the doctor would have hoped, so it was a non-issue for us and used all the stem cells. I’ll have Ben write a bit later about his conversation with various doctors about this – but we came to the conclusion that we were doing the best thing in using them all now. We didn’t want to look back and regret anything.

Phew!

We're back on our hotel room, exhausted but feeling really good. Oh course, when I say exhausted I'm talking about me and Ben. Noa has pulled herself to standing in her hotel crib and is totally rocking out to her lullaby music.

Noa was, as ususal, a rock star.

We were very lucky that we started a bit late (at 2pm, which is pretty much nap time), and they were able to wrangle us the music guy and his guitar, which was a bit help. That plus some pre-procedure benedryl and a total of six adults holding her down added up to about 15 minutes of hair-raising screaming when the IV was put in... followed by about an hour of knocked out sleeping. We had a rough half-hour when she woke up, but once she got the idea that this funky thing on her foot wasn't going away, she seemed to get over it.

The transfusion of the stem cells themselves only took about 10 minutes. Dr. Kurtzburg - the woman who is running this program - did the placing of the IV and the transfusion herself. Putting the IV in the foot turned out to be a good thing because Noa could sign with us and play with toys without being constantly reminded of the IV. The next 3 or so hours were all about saline solution which is intended to keep the cells moving throughout the body.

We learned so much - if only I had the brain power to relate it all now, but in the next day or so I will reveal all we learned about how they believe the stem cells actually work, some tips for folks interested in knowing more about banking cord and more.

But I will tell you that the stuff they use to clean the blood makes Noa's breath smell like... well they say it's either creamed corn or oysters. I'd say it's more like old oysters in creamed corn. It's only supposed to last 24 hours but I have to tell you... she stinks!!! It's quite strange. Ben and I are practicing looking around innocently and wondering what stinks for the plane ride home tomorrow.

Another tid-bit of information, Noa is a real trail-blazer as she is only about the 70th kid to undergo this procedure.

All-in-all it was very smooth. And we felt especially blessed because the child in the room next to us became the first kid to actually have an allergic reaction to the blood cleaner there. We don't know exactly what happened, but there were a lot doctors running around and it was kind of scary. By the time we left it looked like everything was totally under control. Still, it was scary and we really felt for that family - this whole thing was scary enough with everything going right!

Before I sign off for the night, I want to make sure to thank my parents who sprung for the initial collection of the cord blood. We were pretty much out of money by the time Noa arrived and the initial collection is not cheap, so thanks!

Also thanks to all you. Ben and Noa and I can't tell you how much it has meant to know you were all thinking of us and sending good wishes our way. We feel it all deeply and we feel so lucky and blessed and loved.

Now we're back to sitting in front of the tube like everyone else and watching the election results roll in. I'll post more back in NYC. Phew!

Hot Tubbin

I was going to post a video of Noa and Ben in the hotel hot tub here... but the "high speed internet" is... not. Until I can get the video up, here's a photo.

What We Did at Duke Today

Now that the queen has been moved into the proper throne room and has been handed the royal bottle, it's time for the medical update.

We spent about two hours at Duke today. Most of it preparing for the big event tomorrow: weight, height, blood pressure (which caused her blood pressure to rise so high that the computer wouldn't take it, so they tried again with the same results). They stole about six vials of her blood which was highly traumatic. Unfortunately, the vein in her arm slowed down after just three vials and they had to poke the other arm. Mommy let them do it all, so Noa was really into Daddy for quite a while thereafter. But all joking aside, Noa really did amazingly well. She has a new sign for "upset" and it seemed to help her a lot to be able to express how she was feeling.

Finally we met with a nurse practioner who went over Noa's history with us, and went over the events to come. She did a brief a exam, but Noa was pretty much done being poked at. We asked if they'd ever done this procedure with a child as tactically defensive as Noa, and she said she thought Noa might be the most sensitive child they've seen.

She explained to us that their theory with this process is that the stem cells sometimes find their way to the brain and then are activiated and become brain cells, but they may also de-activate and just be absorbed into the body. They believe this process takes place over the course of six months to a year. Some parents have reported things happening more quickly... but they believe it takes longer. But because these are their own cells, there should be no harm from the cells themselves.

We had been told that the infusion process was about 2 hours, but today they said that it may be as long as 4 hours! We expect most of this time will be spent with Noa screaming her brains out. We can only hope that she exhausts herself eventually. It's basically four hours with an IV drip in her arm... but the last time she had an IV in her arm she spent the entire time screaming and thrashing and trying to pull the dang thing out until the doctors just gave up and took it out. But that's not an option on this one. We just have to keep it in.

Our start time for tomorrow has been shifted slightly, from 11:30 to 1:00pm (though we go in at noon). This is so in the morning we can discuss with the doctor how much of the stem cells will be infused and how much, if any, might continue to be preserved. The plan is to infuse them all, but we want to press on that assumption and ensure we are entirely comfortable with that decision.

So... we're excited and nervous and getting some rest for the big day ahead.

Happy voting everyone!

Thanks for all your good wishes, prayers and love - it means so so much to us!

Planes, Southern Hospitality and... Reshmi!

Wondering about the photo? I'll get to that...
And I'll get to our adventures at the hospital in a post to come later this evening. This is really just the trip report. So if you're looking for a medical update, check back in a few hours.

So, aside from running late, our flight south was uneventful. Yeah, spilled about half a bottle of Pedisure into my lap, and a few spoonfuls of banana, and applesauce. Oh, and hot coffee. But other than that.

We were staggering somewhat dazed through the airport in NC when someone called my name. I turned around and it was Reshmi Hazra! Reshmi is one of Noa's former nannies - she even came to Idaho with us one summer - she is on Noa's top ten list of fun people, so it was really neat to run into her and somewhat surreal. I thought maybe I'd fallen asleep and this was all just a dream! She was actually waiting to get on a plane back to NYC. Talk about small world!

The real fun started when we got to the hotel. They'd already lost our reservation twice. When I called them from the airport earlier in the day they assured me our room would be ready, with crib, with frig. We got there. They claimed to never have heard of us. Again. Nonetheless they let us check in (for the time being anyway). But as it turns out they didn't have a crib.

So, here's southern hospitality for you: the manager (who I'd spoke with earlier in the day) told me oh-so-sweetly that she didn't why the people at Duke would have promised me a crib.

Me, all NYC, says "they didn't promise me, your people did."
Her, all sweet: "oh I don't know who would have done that."
Me, again with my NYC on: "You. I spoke to you at 4pm today. You told me not to worry - we'd have a crib and a frig."
Sickly sweet: "Well I told the engineer and I suppose that just went in one ear and out the other. He's in charges of the frigs, so I thought we had the crib. But those people at Duke just never should have promised you one."

NYC Girl: "They didn't. You did."
Etc, etc...

SO we got ZERO sleep last night and then had to be a the hospital at 9am. Being in bed with Mommy and Daddy was a great big game for Noa - I wake one up and force him/her to play with and when that one gets fed up, I wake up the other one. And so it went.

Oh, and the wireless internet? Only one problem with it... you got it through a cord that you took out of the phone and stuck in your computer. Ya see wireless would imply... well, nevermind.

SO - after our hospital adventures (to come later), I sent Ben down to lawyer talk the front office. Now we're in a room with two beds, a frig, suddenly... a crib, and wireless (they claimed the room didn't have internet... what do they know).

BUT THE BEST PART IS that as we were going to the hospital this morning we noticed that there were two entrances to the hotel parking lot. One with the hotel's sign... and one with the sign at the top of this post... sleep disorder center??? We highly suspect that this Duke Medical rate at the hotel is actually part of some study on sleep deprivation...

On the plus side, as I type this post Ben and Noa are having a good ol' time splashing about in the hotel's hot tub. Her hysterical laughter bounced off the giant windows has basically chased away anyone else, so we've go the place to ourselves. Man, I bet the people at this hotel love us!

I promise not to post video everyday...

But something kind of amazing happened today and I just couldn't resist. Noa has never been able to pull herself to standing without the help of another person... until today! I put her down for a nap - and after about 20 minutes I heard a sound that I didn't recognize so I went in to check on her and there she was... standing! After a brief celebration, I put her down again and watched as she pulled herself up lickity-split as if she'd been doing it for months.

I thought she might do it again when we put her down for bed but no dice, until Ben turned on her favorite toy (the zazee pen, basically it's like an electric toothbrush with a rubber toy on top). She sat up so fast that she was already sitting by the time I got the camera going.

We can't help but think of it as a sign that Noa is ready for the next big thing...

Here is some video of Noa walking - I know there are some of you who will be amazed. It's taken a long time to get to this place, but Noa really loves to be up on her feet now. I think she gets that its a big-kid thing.

HAPPY HALLOWEEN!

For those of you who asked for more photos of Noa, the Halloween Parade in our building offered the perfect photo op (I know it doesn't look like much, that's just because we're bringing up the rear at this point).

Noa loved wearing her skunk costume and all the excitement around the parade - she really got that it was a special event, and she's kind of a party-girl. She did a lot of walking - which was really an enormous effort for her. We were so proud of her! She even got a bag of candy! She shook it once, decided it was a broken toy and threw it away.

With all the craziness around getting ready for the big trip to Duke, it was a terrific, fun break for all of us - a big thanks to Melissa who was a huge part of the Halloween fun, and she took these great photos!

We leave for Duke on Sunday afternoon - and yes, we'll be trying to get to the airport in the midst of the NY Marathon!

We meet with the staff at Duke on Monday morning for a bit. The procedure itself is scheduled for 11:00am Tuesday morning and should take about 2 hours. If all goes well we'll be back in NYC by Wednesday afternoon!

We are tremendously grateful for all the prayers, good vibes, the salt over the shoulders, the white healing light, etc... Your good wishes mean so much to us.
We thank you thank you thank you, and Noa sends big bubbly belly laugh your way!

Thanks Everyone!

Just a quick post to thank all of you who responded so warmly to The Land of Noa blog, and sent your well wishes, prayers, pinches of salt, etc...

Wow! We are truly blessed to have such supportive friends and family members.

Thanks and Love to you all!

Jeni, Ben & Noa

Stem Cells....

Okay, so on to this thing at Duke. I actually heard about this procedure on the world news - they were doing it for kids with Cerebral Palsy, but I thought they might consider Noa since her condition, like CP, was caused by tramatic brain injury. The doctor they interviewed was at Duke so I just reached out her - this was about nine months ago.

The program is only open to kids that have their umbilical cord blood banked. We did this with Noa mainly because she is adopted, and that when you don't have a lot of possible organ donors tramping around your house you think of these things.

The process is actually surprisingly simple. They insert an IV, transfuse the stem cells into her arm, and let them do their work. The assumption is that the cells know where they are needed and they go there. They have had some cases in which they have had wonderful success, and others in which is appears to make no major difference at all. We just don't know what to expect.

We don't expect this to be a magic wand, or a cure. We hope that it will bring some improvement in one or more areas. We just don't know. There is very little about this on web because it's a new procedure - but here is some stuff about two of the kids who are real success stories:
http://www.cnsfoundation.org/site/News2?page=NewsArticle&id=7331
http://articles.latimes.com/2008/apr/07/health/he-cpalsy7
And here are some great youtube stories of kids - and the Duke program. Remember, these are the most dramatic successes. We don't know how Noa will do. We're trying to keep some balance - we'll hope for the best, but understand that we don't get to decide what the best will be.
http://www.youtube.com/watch?v=ITRAchU2C0I
http://www.youtube.com/watch?v=PT4ydxomnQ0&feature=related
http://www.youtube.com/watch?v=Gr0OOtvKU0A&feature=related

What is a Pre Natal Stroke and Other Questions I Get Asked...

People ask a lot about Noa's condition. It's difficult because she really doesn't have a condition that has one name - and most people haven't heard of a pre-natal stroke. On top of that, Noa's stroke was unusual because it was quite extensive and bi-lateral, meaning that both hemispheres (or sides) of the brain were affected. Often in a stroke (at any age), one hemisphere is affected and so one side compensates for the other. This is not the case for Noa. She has damage to the temporal, occipital and parietal lobes bilaterally.

Also, because Noa had her stroke before birth, it's not a matter of RE-learning things that were lost, as it is in adult strokes, it is a matter of learning for the first time. Luckily, the brain is very plastic, especially early in life so, for example, doctors looking at her MRI told us she was deaf because of damage to a certain area of her brain - but we didn't think she was deaf. We took her for hearing tests, and despite what the MRI indicated, she can hear. Her brain just figured out how to do that on its own.

But as the above example demonstrates, each brain is so individual, and the way it responds is so unique, that it's absolutely impossible for anyone to predict how a child like Noa will do. A child with the exact same brain pattern may very different issues (though there are no two alike, because every stroke is different) - and there is no way to predict the outcome. In fact, when Noa was first diagnosed, the doctor told that she might be a vegetable who would never be able to sit up - or she might be blind and otherwise normal - we just had to throw all the therapy at her that we could and see what stuck. And that is pretty much what we've been doing.

Here is a link to a pediatric stroke site that has some more background information:
http://www.pediatricstrokenetwork.com/

What does Noa “see”?

This is the other question I get a lot. Noa’s particular kind of blindness is called Cortical Vision Impairment (or CVI), and really its more about understanding than it is about seeing. Noa has some damage to the optic nerve (which carries visual impulses to the brain), but there are at least some visual impulses getting to her brain. We know this thanks to a horrid test that we’ll never do again.

The problem is that her brain cannot make sense of this information. I usually explain like standing too close to an Impressionist painting: it just doesn’t make any sense.

There is a great range within the world of CVI – some of these kids can understand quite a lot of what they see, some understand less. Often for kids like Noa, the visual information they are getting seems distracting for them so they avoid it. For example, Noa will look away from something as she reaches for it because looking at it distracts her from finding it. CVI kids also tend to shake their heads a lot because it’s easier to see an object in motion than it is to see something that is still.

There is no operation or cure for CVI – but there are some new therapies that we’re working with and that we have found very helpful. The key tool is a light box (like the ones we used to use to view slides back in the day). It is eliminating all the distractions that make understanding visual information difficult and asking the child to focus on one thing. Basically the idea is to train the brain to recognize certain colors, shapes, objects. This is a very slow process – and like everything else in the world of Noa, it is impossible to predict where it will take us. But it is having a positive impact in that Noa seems more aware of the space around and gets the idea that there might be some useful information coming in through her eyes.

It’s as fascinating, but complicated area. Here are some good links:
http://www.ohiolionseyeresearch.com/cortical_visual_impairment.htm
http://www.aph.org/cvi/define.html
http://www.aph.org/cvi/articles/morse_2.html
I wish I had some links with more information about the therapies we're doing, but it's just not really on the net at this point. If I find a link I'll post it....

Welcome to the Land of Noa

Welcome Friends and Family!

As many of you already know, we'll be traveling down to North Carolina about a week so that Noa can have an umbilical stem cell transfusion - this is a new process using her own umbilical stem cells which we hope will help to repair some of the damage caused by a pre-natal stroke that left her blind and dealing with a number of developmental issues.

We know you all have a lot of questions - everything from "what is a pre-natal stroke?" to "what is this stem cell thing supposed to do?" and "how does it work?" I'm not sure we can answer all of your questions here. In fact, there are many questions that we don't know the answers to ourselves!

For those of you who don't know Noa in person, I should let you know that she is one of the most vibrant, fun-loving and optimistic people I know. It's easy to get terrified and/or depressed reading all this medical information and to get the image of Noa's situation as sad. But when you're around her, it's hard to feel that - she has an infectious laugh and she loves to use it. She even wakes up laughing! And for a kid who can't walk or talk she sure does boss us around and exhaust us!

Noa communicates with us through sign language which she has learned, very much like Helen Keller did, by showing her hand-over-hand. Like any toddler she spends a lot of time wanting us to do "more" of this, or "stop" that over and over and over again. She is learning to walk with a walker and loves to be up on her feet. Once she finds her sense of balance, we'll all be in serious trouble!

Noa attends pre-school 5-days a week at the Jewish Guild for the Blind. She comes and goes on, yes, the short bus. In addition to providing her with contact with other visually impaired kids her age, and usual kidstuff like music and art, they also provide physical therapy, occupational therapy, vision therapy, speech therapy, feeding therapy as well as orientation and mobility. In addition to that we take her to extra physical therapy and music therapy. So she's a busy busy kid!

So welcome to the Land of Noa. It's a complicated place, it's a fascinating place, it's a wild ride, it's a laugh-fest and sometimes a cry-fest and it's ruled by an adorable, blond bundle of energy who is, as my friend Jim Abar says, cute like Pebbles, strong like Bam-Bam.