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...