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...